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The Latest in Disability Research, Advocacy, Policy, and Practice
Fall 2020 Disability RAPP: The 30th Anniversary of the ADA
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Fall 2020 Disability RAPP: 30th Anniversary of the ADA Issue Overview
It’s been 30 years since the Americans with Disabilities Act (ADA) was signed into law. From employment and communication to transportation and voting, we explore how the ADA has fundamentally altered our understanding of what it means to live with a disability.
We want to hear from you. Please share your ideas for future themes, or your suggestions of how we can increase accessibility, by emailingmail@drcnh.org.
It’s been 30 years since the Americans with Disabilities Act (ADA) was signed into law. From employment and communication to transportation and voting, we explore how the ADA has fundamentally altered our understanding of what it means to live with a disability.
We want to hear from you. Please share your ideas for future themes, or your suggestions of how we can increase accessibility, by emailingmail@drcnh.org.
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[title] => Looking Back on the Passing of the ADA
[subtitle] => By Vanessa Blais, Project Manager with the NH Council on Developmental Disabilities
[content] => Justin Dart, Jr. (Godfather of the ADA) NH State House ADA rally, 1990
Stewards of the Revolution
Looking Back on the Passing of the ADA
By Vanessa Blais
Most people in the disability community
know the image of President George H. W. Bush in the White House Rose Garden signing the Americans with Disabilities Act (ADA) in July 1990. However, up until the recent documentary Crip Camp, many did not know the details of the long and arduous fight for disability rights that culminated in the ADA.
Prior to the passing of the Act, rallies
were held throughout the country, in-
cluding those held in New Hampshire.
The New Hampshire State House rally was attended by many advocates and legislators from across the state, as well as by Justin Dart Jr., a prominent disability rights activist who contracted polio as a young man. Dart and his wife, Yoshiko – herself a strong disability rights activist – traveled to every U.S. state, Puerto Rico, and Guam, advocating for the passing of the Act. Dart experienced discrimination throughout his life, including being denied a teaching certificate from the University of Houston because of his disability.
A man known for his candor, Dart at one point was asked to resign as lead to the Rehabilitation Services Administration* because of his comments on the ineffectiveness of the agency, calling it “a vast, inflexible federal system which, like the society it represents, still contains a significant portion of individuals who have not yet overcome obsolete, paternalistic attitudes about disability.”
Dart, along with many others, made his voice heard in Concordin 1990. Roberta Gallant, a member of the NH Council on Developmental Disabilities and the Self-Advocates Leadership Team, remembers the rally well. “There was a huge turnout,” Gallant shares. “I held up a sign. My sister, Jocelyn Gallant, also attended and held a sign. People from the Bureau of Developmental Services, the Disability Rights Center, the Governor’s Commission [on Disability], the Parent Information Center, the NH Council on Developmental Disabilities, Granite State Independent Living, and Health and Human Services were all there. The Concord Monitor, Union Leader, and WMUR-TV reported on the rally. As a representative of people with disabilities, I gave a speech on the platform about receiving accommodation from businesses throughout New Hampshire.”
Mark Race, current Supervisor of New Hampshire National Spinal Cord Injury Association and GSIL Peer Support, shared his memories. “My mentor, Sally Conway, played her acoustic guitar and we sang along outdoors on that beautiful day,” Race remembers. “It was powerful. Senator Tom Harkin advocated that the Act be a civil rights law and not something special. The motto was Same, Not Special because when is it special to be able to get into a building?”
Highly-respected advocate Laurie DeMayo of Manchester, NH.Former Developmental Disabilities Council members Marilyn Senter and Jim Piet (left) talk with visiting activists and politicians at the NH ADA rally.
Education = Inclusivity
The pushback against the ADA, helped along by people such as actor Clint Eastwood, who was sued for neglecting to make his California resort fully accessible, later motivated Justin Dart to help create Justice for All. (Eastwood won the case, calling it a “victory for the little guy.”) The mission of Justice for All was to educate, motivate, and support advocates throughout the country to protect not only the legislation, but the values of the ADA from systemic attempts to weaken them. Dart later helped to form the American Association of People with Disabilities, an organization dedicated to furthering the implementation of the ADA and advocating for the legal rights of people with disabilities. We can learn a great deal from Dart’s constant dedication to this cause and his resistance to complacency.
While the lives of people with disabilities have dramatically changed since the NH ADA rally, the fight continues for acceptance and inclusion.
Justin Dart, Jr. prepares to speak at the NH ADA rally in 1990.
At the end of his life, Justin Dart ended one of his many writings with these words:“Beloved colleagues in struggle, listen to the heart of this old soldier. Our lives, our children’s lives, the quality of the lives of billions in future generations hangs in the balance. I cry out to you from the depths of my being. Humanity needs you! Lead! Lead! Lead the revolution of empowerment!”
For many, the passing of the ADA was a final declaration that people with disabilities deserve the same rights, opportunities, and quality of life as
people without disabilities. However, as with other culture-changing legislative policy, the ADA has a past, a present, and a future. That future depends
on the stewardship of these rights. It also involves continuing to educate our communities on the benefits that inclusivity has for all of us.
Vanessa Blais is the NHCDD Project Manager.
ADA 30 Logo Credit: ADA National Network (adata.org)
*The Rehabilitation Services Administration is a federal agency established to assist state and other agencies in providing vocational rehabilitation (VR) for people with various disabilities.
By Vanessa Blais, Project Manager with the NH Council on Developmental Disabilities
Justin Dart, Jr. (Godfather of the ADA) NH State House ADA rally, 1990
Stewards of the Revolution
Most people in the disability community
know the image of President George H. W. Bush in the White House Rose Garden signing the Americans with Disabilities Act (ADA) in July 1990. However, up until the recent documentary Crip Camp, many did not know the details of the long and arduous fight for disability rights that culminated in the ADA.
Prior to the passing of the Act, rallies
were held throughout the country, in-
cluding those held in New Hampshire.
The New Hampshire State House rally was attended by many advocates and legislators from across the state, as well as by Justin Dart Jr., a prominent disability rights activist who contracted polio as a young man. Dart and his wife, Yoshiko – herself a strong disability rights activist – traveled to every U.S. state, Puerto Rico, and Guam, advocating for the passing of the Act. Dart experienced discrimination throughout his life, including being denied a teaching certificate from the University of Houston because of his disability.
A man known for his candor, Dart at one point was asked to resign as lead to the Rehabilitation Services Administration* because of his comments on the ineffectiveness of the agency, calling it “a vast, inflexible federal system which, like the society it represents, still contains a significant portion of individuals who have not yet overcome obsolete, paternalistic attitudes about disability.”
Dart, along with many others, made his voice heard in Concordin 1990. Roberta Gallant, a member of the NH Council on Developmental Disabilities and the Self-Advocates Leadership Team, remembers the rally well. “There was a huge turnout,” Gallant shares. “I held up a sign. My sister, Jocelyn Gallant, also attended and held a sign. People from the Bureau of Developmental Services, the Disability Rights Center, the Governor’s Commission [on Disability], the Parent Information Center, the NH Council on Developmental Disabilities, Granite State Independent Living, and Health and Human Services were all there. The Concord Monitor, Union Leader, and WMUR-TV reported on the rally. As a representative of people with disabilities, I gave a speech on the platform about receiving accommodation from businesses throughout New Hampshire.”
Mark Race, current Supervisor of New Hampshire National Spinal Cord Injury Association and GSIL Peer Support, shared his memories. “My mentor, Sally Conway, played her acoustic guitar and we sang along outdoors on that beautiful day,” Race remembers. “It was powerful. Senator Tom Harkin advocated that the Act be a civil rights law and not something special. The motto was Same, Not Special because when is it special to be able to get into a building?”
Highly-respected advocate Laurie DeMayo of Manchester, NH.Former Developmental Disabilities Council members Marilyn Senter and Jim Piet (left) talk with visiting activists and politicians at the NH ADA rally.
Education = Inclusivity
The pushback against the ADA, helped along by people such as actor Clint Eastwood, who was sued for neglecting to make his California resort fully accessible, later motivated Justin Dart to help create Justice for All. (Eastwood won the case, calling it a “victory for the little guy.”) The mission of Justice for All was to educate, motivate, and support advocates throughout the country to protect not only the legislation, but the values of the ADA from systemic attempts to weaken them. Dart later helped to form the American Association of People with Disabilities, an organization dedicated to furthering the implementation of the ADA and advocating for the legal rights of people with disabilities. We can learn a great deal from Dart’s constant dedication to this cause and his resistance to complacency.
While the lives of people with disabilities have dramatically changed since the NH ADA rally, the fight continues for acceptance and inclusion.
Justin Dart, Jr. prepares to speak at the NH ADA rally in 1990.
At the end of his life, Justin Dart ended one of his many writings with these words:“Beloved colleagues in struggle, listen to the heart of this old soldier. Our lives, our children’s lives, the quality of the lives of billions in future generations hangs in the balance. I cry out to you from the depths of my being. Humanity needs you! Lead! Lead! Lead the revolution of empowerment!”
For many, the passing of the ADA was a final declaration that people with disabilities deserve the same rights, opportunities, and quality of life as
people without disabilities. However, as with other culture-changing legislative policy, the ADA has a past, a present, and a future. That future depends
on the stewardship of these rights. It also involves continuing to educate our communities on the benefits that inclusivity has for all of us.
Vanessa Blais is the NHCDD Project Manager.
ADA 30 Logo Credit: ADA National Network (adata.org)
*The Rehabilitation Services Administration is a federal agency established to assist state and other agencies in providing vocational rehabilitation (VR) for people with various disabilities.
Just down the road from Woodstock, NY in the late 1960s and early 1970s, a parallel revolution blossomed in a ramshackle summer camp for disabled teenagers. Steeped in the humor and music of the era, Crip Camp explores the universal experience of summer camp awakenings that would transform lives and shape the future of the disability rights movement. Told from the point of view of former camper Jim LeBrecht, the film traces the journeys of campers up to the present day, in this compelling and untold story of a powerful journey towards inclusion.*
This spirited look at grassroots activism is executive produced by Barack and Michelle Obama.
*International Documentary Association
Available to view on Netflix
[caption id="attachment_2413" align="alignleft" width="163"] Poster for Crip Camp[/caption]
Just down the road from Woodstock, NY in the late 1960s and early 1970s, a parallel revolution blossomed in a ramshackle summer camp for disabled teenagers. Steeped in the humor and music of the era, Crip Camp explores the universal experience of summer camp awakenings that would transform lives and shape the future of the disability rights movement. Told from the point of view of former camper Jim LeBrecht, the film traces the journeys of campers up to the present day, in this compelling and untold story of a powerful journey towards inclusion.*
This spirited look at grassroots activism is executive produced by Barack and Michelle Obama.
*International Documentary Association
Available to view on Netflix
“All of us recognize the crucial role transportation plays in our lives. It is the veritable lifeline which enables all persons to enjoy the full economic and social benefits which our country offers. To be denied effective transportation is to be denied the full benefits of employment, public and private services, and other basic opportunities.” — Rep. Luken while debating the ADA (1990)
Thirty years ago, the Americans with Disabilities Act (ADA) was passed. This landmark piece of civil rights legislation aims to prohibit discrimination and create more access for people with disabilities in all facets of life. Specifically, Title III of the ADA governs “public accommodations” that are operated by private entities. Public accommodations provide people with disabilities access to the goods and services offered to the rest of the general public. For instance, access for people with disabilities must be provided at places of recreation such as stadiums, zoos, and museums. There must be accommodations available to attendees of public displays, like galleries. Sales or rental establishments must also comply, as must social services centers. Denying someone access to or preventing use of a good, service, or accommodation because of their disability is discrimination. 1
Ridesharing has become a $60 billion international industry, with projections of a quarter of a billion dollars in market value within the next five years. The business model is based on a simple premise: riders use an app on their phone to arrange one-way service on short notice, using a credit card or PayPal to complete the transaction.The largest companies within this space are Uber and Lyft.
Uber claims that its technology is “helping to increase mobility and independence for riders with disabilities….” One way that Uber tries to accomplish this is through specialty services such as UberWAV, which offers wheelchair-accessible vehicles that can accommodate riders with disabilities. UberAccess and UberAssist offer drivers who are trained and certified to assist passengers getting in and out of vehicles with assistive devices like walkers, but they don’t offer wheelchair ramps.
Tony Coelho, co-author of the ADA, is quoted on Uber’s website stating that “WAV will empower people requiring wheelchair-accessible vehicles to get a ride when they need one simply by pressing a button.”2
But how are UberWAV and other ridesharing apps working in practice? Many people who use wheelchairs have reported that Uber and Lyft have substandard or even non-existent services for them. 3 Significantly, accessible ridesharing options such as UberWAV are not available in New Hampshire. Even for a city like Manchester, accessible Uber or Lyft options are not available. 4 Only the standard Uber and Lyft services, including UberX, UberXL, Lyft and Lyft XL, are available to New Hampshire residents.
Although ridesharing companies are working to provide accessible services to people with disabilities, these services often fall short and are not equally available to all people with disabilities. Even when services are purportedly available, discriminatory behavior can occur. For example, during a vacation to New Orleans for Mardi Gras, Dorene Giacopini ordered a ride on her rideshare app to go to dinner with her husband. Ms. Giacopini has spina bifida and needs to use a wheelchair for mobility. When she saw the car approaching, the driver saw her wheelchair and just kept on driving. Reflecting on this experience, Ms. Giacopini said, “[I]t was incredibly frustrating…it makes you feel like you’re being treated as a second-class citizen, that you don’t count.” 5
Melissa Riess, an attorney with Disability Rights Advocates, says [referring to Lyft] that “[t]here is not a place in this country where they are providing wheelchair-accessible service at a level which is equivalent to what they provide to people who don’t need wheelchair-accessible service.” This, she says, is discrimination. 6
To resolve this issue, people with disabilities have been taking legal action against ridesharing companies. Ms. Giacopini is one of the plaintiffs in a class-action lawsuit against Lyft. This lawsuit, like similar lawsuits against Lyft and Uber in New York, Chicago, and other cities throughout the country, alleges that ridesharing companies are in violation of the ADA.
However, winning an ADA lawsuit against these ridesharing companies is proving more difficult than many first envisioned. Generally, Title III of the ADA requires transportation services like taxis to be made more accessible. Whether ridesharing companies like Uber and Lyft are subject to Title III is still an unsettled question. While Title III does not provide one clear definition of a public accommodation, the ADA lists types of private entities that are considered public accommodations.
Many people have made the argument that if ridesharing companies are considered
public accommodations, then they most likely fall within the “services operated by private entities” category. This category states that “no individual shall be discriminated against on the basis of disability in the full and equal enjoyment of specified public transportation services provided by a private entity that is primarily engaged in the
business of transporting people and whose operations affect commerce.” 8
Uber and Lyft have argued that they are not actually public accommodations and should not be subject to the accessibility requirements of the ADA. The ADA considers private entities to be a type of “public accommodation” if they are “primarily engaged in the business of transporting people.” Uber and Lyft have tried to argue that they are primarily technology companies, not transportation companies, and because of this, they argue that they are exempt from ADA regulations. So far, judges have mostly rejected this argument and allowed lawsuits against Uber and Lyft to move forward.
Pending and future litigation will provide more answers about the type of access and accommodation that must be provided by ridesharing companies. Because of their advocacy efforts, people with mobility impairments and other disabilities are making progress to ensure that companies like Uber and Lyft change their policies to make their services more accessible.
By: Anna Lussier
“All of us recognize the crucial role transportation plays in our lives. It is the veritable lifeline which enables all persons to enjoy the full economic and social benefits which our country offers. To be denied effective transportation is to be denied the full benefits of employment, public and private services, and other basic opportunities.”
— Rep. Luken while debating the ADA (1990)
Thirty years ago, the Americans with Disabilities Act (ADA) was passed. This landmark piece of civil rights legislation aims to prohibit discrimination and create more access for people with disabilities in all facets of life. Specifically, Title III of the ADA governs “public accommodations” that are operated by private entities. Public accommodations provide people with disabilities access to the goods and services offered to the rest of the general public. For instance, access for people with disabilities must be provided at places of recreation such as stadiums, zoos, and museums. There must be accommodations available to attendees of public displays, like galleries. Sales or rental establishments must also comply, as must social services centers. Denying someone access to or preventing use of a good, service, or accommodation because of their disability is discrimination. 1
[caption id="attachment_2448" align="alignleft" width="300"] Modern young man putting wheelchair in a trunk[/caption]
Ridesharing has become a $60 billion international industry, with projections of a quarter of a billion dollars in market value within the next five years. The business model is based on a simple premise: riders use an app on their phone to arrange one-way service on short notice, using a credit card or PayPal to complete the transaction.The largest companies within this space are Uber and Lyft.
Uber claims that its technology is “helping to increase mobility and independence for riders with disabilities….” One way that Uber tries to accomplish this is through specialty services such as UberWAV, which offers wheelchair-accessible vehicles that can accommodate riders with disabilities. UberAccess and UberAssist offer drivers who are trained and certified to assist passengers getting in and out of vehicles with assistive devices like walkers, but they don’t offer wheelchair ramps.
Tony Coelho, co-author of the ADA, is quoted on Uber’s website stating that “WAV will empower people requiring wheelchair-accessible vehicles to get a ride when they need one simply by pressing a button.”2
But how are UberWAV and other ridesharing apps working in practice? Many people who use wheelchairs have reported that Uber and Lyft have substandard or even non-existent services for them. 3 Significantly, accessible ridesharing options such as UberWAV are not available in New Hampshire. Even for a city like Manchester, accessible Uber or Lyft options are not available. 4 Only the standard Uber and Lyft services, including UberX, UberXL, Lyft and Lyft XL, are available to New Hampshire residents.
Although ridesharing companies are working to provide accessible services to people with disabilities, these services often fall short and are not equally available to all people with disabilities. Even when services are purportedly available, discriminatory behavior can occur. For example, during a vacation to New Orleans for Mardi Gras, Dorene Giacopini ordered a ride on her rideshare app to go to dinner with her husband. Ms. Giacopini has spina bifida and needs to use a wheelchair for mobility. When she saw the car approaching, the driver saw her wheelchair and just kept on driving. Reflecting on this experience, Ms. Giacopini said, “[I]t was incredibly frustrating…it makes you feel like you’re being treated as a second-class citizen, that you don’t count.” 5
Melissa Riess, an attorney with Disability Rights Advocates, says [referring to Lyft] that “[t]here is not a place in this country where they are providing wheelchair-accessible service at a level which is equivalent to what they provide to people who don’t need wheelchair-accessible service.” This, she says, is discrimination. 6
To resolve this issue, people with disabilities have been taking legal action against ridesharing companies. Ms. Giacopini is one of the plaintiffs in a class-action lawsuit against Lyft. This lawsuit, like similar lawsuits against Lyft and Uber in New York, Chicago, and other cities throughout the country, alleges that ridesharing companies are in violation of the ADA.
However, winning an ADA lawsuit against these ridesharing companies is proving more difficult than many first envisioned. Generally, Title III of the ADA requires transportation services like taxis to be made more accessible. Whether ridesharing companies like Uber and Lyft are subject to Title III is still an unsettled question. While Title III does not provide one clear definition of a public accommodation, the ADA lists types of private entities that are considered public accommodations.
Many people have made the argument that if ridesharing companies are considered
public accommodations, then they most likely fall within the “services operated by private entities” category. This category states that “no individual shall be discriminated against on the basis of disability in the full and equal enjoyment of specified public transportation services provided by a private entity that is primarily engaged in the
business of transporting people and whose operations affect commerce.” 8
Uber and Lyft have argued that they are not actually public accommodations and should not be subject to the accessibility requirements of the ADA. The ADA considers private entities to be a type of “public accommodation” if they are “primarily engaged in the business of transporting people.” Uber and Lyft have tried to argue that they are primarily technology companies, not transportation companies, and because of this, they argue that they are exempt from ADA regulations. So far, judges have mostly rejected this argument and allowed lawsuits against Uber and Lyft to move forward.
Pending and future litigation will provide more answers about the type of access and accommodation that must be provided by ridesharing companies. Because of their advocacy efforts, people with mobility impairments and other disabilities are making progress to ensure that companies like Uber and Lyft change their policies to make their services more accessible.
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[title] => Community, Communication, and the ADA
[subtitle] => By Bob Williams
[content] =>
In 1990, President George H. W. Bush said that by signing the ADA into law he was taking a sledgehammer to “the shameful wall of exclusion.” He was not merely referring to toppling concrete barriers such as stairs, sidewalk curbs, and inaccessible transit. He was also recognizing that the most pernicious parts of that wall were heavily fortified by overt and implicit prejudices as well as stereotypical and antiquated assumptions.
Bob Williams is the Policy Director of Communication FIRST.
Thirty years later, progress continues on both fronts. The country’s architecture, technology, and infrastructure are more readily accessible to those with disabilities. Slowly, biases that segregate, isolate, institutionalize and cause other irreparable harm to those with disabilities are also being eliminated. However, the fatal threats of structural racism and the coronavirus make it clear that far more must be done to secure equal justice for all people with disabilities of every age, race, ethnicity, culture, language, and sexual identity in the U.S.
Communication FIRST, the only national human and civil rights organization led by people with significant communication disabilities, is committed to help meet this challenge. There are currently about five million children, teenagers, working age persons, and older adults in our country who cannot rely on natural speech to express themselves. Due to advances in law, technology, and related factors, more of us now have access to augmentative and
alternative communication (AAC) strategies to communicate and live our lives.
However, many needing AAC still lack effective access to it, and consequently experience increased risk of institutionalization, abuse1, lower levels of education, employment, and poorer health outcomes.2 These outcomes are all tied to age-old biases and myths that brand us as having little to say or to contribute to our families, communities, or nation.3 Black and brown people with significant communication disabilities often fare much worse than
caucasian people with disabilites.4
The promise of the ADA is that we will live as equals in our communities. To do so, we must be able to communicate, connect, and find a shared sense of respect, understanding, and belonging. It is time to rip down the remaining shameful wall of exclusion, isolation, and injustice.
Bob Williams is the Policy Director of Communication FIRST. He has worked on the closing of Forest Haven, the passage of the ADA, and held key roles in the federal government and elsewhere to advance disability civil rights since the 1970’s.
1 “Supporting Survivors of Sexual Assault with Intellectual and Developmental Disabilities,” [Radio series episode]. (2018, January 8). NPR.
2 The Promise of Assistive Technology to Enhance Activity and Work Participation. (2017). National Academies of Sciences, Engineering, and Medicine
3 Alper, M. (2017). Giving voice: Mobile communication, disability, and inequality. Cambridge, Massachusetts ; London, England: MIT Press.
4 Fried-Oken, M., & Bersani, H. A. (2000). Speaking up and spelling it out: Personal essays on augmentative and alternative communication. Baltimore: Paul H. Brookes Pub.; Peña, E. V. (2019). Leaders around me: Autobiographies
of autistics who type, point, & spell to communicate.
In 1990, President George H. W. Bush said that by signing the ADA into law he was taking a sledgehammer to “the shameful wall of exclusion.” He was not merely referring to toppling concrete barriers such as stairs, sidewalk curbs, and inaccessible transit. He was also recognizing that the most pernicious parts of that wall were heavily fortified by overt and implicit prejudices as well as stereotypical and antiquated assumptions.
[caption id="attachment_2416" align="alignright" width="294"] Bob Williams is the Policy Director of Communication FIRST.[/caption]
Thirty years later, progress continues on both fronts. The country’s architecture, technology, and infrastructure are more readily accessible to those with disabilities. Slowly, biases that segregate, isolate, institutionalize and cause other irreparable harm to those with disabilities are also being eliminated. However, the fatal threats of structural racism and the coronavirus make it clear that far more must be done to secure equal justice for all people with disabilities of every age, race, ethnicity, culture, language, and sexual identity in the U.S.
Communication FIRST, the only national human and civil rights organization led by people with significant communication disabilities, is committed to help meet this challenge. There are currently about five million children, teenagers, working age persons, and older adults in our country who cannot rely on natural speech to express themselves. Due to advances in law, technology, and related factors, more of us now have access to augmentative and
alternative communication (AAC) strategies to communicate and live our lives.
However, many needing AAC still lack effective access to it, and consequently experience increased risk of institutionalization, abuse1, lower levels of education, employment, and poorer health outcomes.2 These outcomes are all tied to age-old biases and myths that brand us as having little to say or to contribute to our families, communities, or nation.3 Black and brown people with significant communication disabilities often fare much worse than
caucasian people with disabilites.4
The promise of the ADA is that we will live as equals in our communities. To do so, we must be able to communicate, connect, and find a shared sense of respect, understanding, and belonging. It is time to rip down the remaining shameful wall of exclusion, isolation, and injustice.
Bob Williams is the Policy Director of Communication FIRST. He has worked on the closing of Forest Haven, the passage of the ADA, and held key roles in the federal government and elsewhere to advance disability civil rights since the 1970’s.
1 “Supporting Survivors of Sexual Assault with Intellectual and Developmental Disabilities,” [Radio series episode]. (2018, January 8). NPR.
2 The Promise of Assistive Technology to Enhance Activity and Work Participation. (2017). National Academies of Sciences, Engineering, and Medicine
3 Alper, M. (2017). Giving voice: Mobile communication, disability, and inequality. Cambridge, Massachusetts ; London, England: MIT Press.
4 Fried-Oken, M., & Bersani, H. A. (2000). Speaking up and spelling it out: Personal essays on augmentative and alternative communication. Baltimore: Paul H. Brookes Pub.; Peña, E. V. (2019). Leaders around me: Autobiographies
of autistics who type, point, & spell to communicate.
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[title] => Why Should New Hampshire Return to Business as Usual?
[subtitle] => By Romy Eberle
[content] =>
Months have passed since Governor Chris Sununu’s original stay-at-home order went into effect in response to the pandemic. The order, which closed the physical workplace and barred in-person operations of all non-essential businesses, caused many employers to adopt accommodations that allowed their employees to work from the safety of their homes. By forcing people all over the state to shelter in place, the coronavirus introduced Granite Staters to what many people with disabilities have long required to work successfully.
This summer marks the 30th anniversary of the passage of the Americans with Disabilities Act (ADA); an historic event that deserves consideration as we take steps to reopen the economy. The employment section of the ADA is meant to reduce or eliminate the barriers that prevent people with disabilities from obtaining and maintaining employment. The ADA requires covered employers to provide reasonable accommodations to qualified people with disabilities so long as the employee can still do the essential functions of the job. The accommodation must also not create an undue burden for the employer, e.g., if the requested accommodation is excessively difficult for the employer to implement or is prohibitively expensive.
Individuals with disabilities have long fought for – and often denied – flexibilities that have become a “new normal” during the coronavirus: flexible work hours, remote working environments, and alternative communication formats. This leaves advocates and workers with disabilities wondering if this could mark a turning point for the Granite State by offering more flexible work accommodations. Or, once the pandemic is over, will we return to business as usual?
Tim Sink, President of the Greater Concord Chamber of Commerce, believes the new norm will likely be somewhere in the middle. “I think it will be a mix of how we used to do business and combining it with the best of what we’ve learned during this crucial period,” says Sink. Like the rest of the country, the Greater Concord Chamber of Commerce made several adjustments to remain open during the pandemic, such as hosting virtual board meetings, using Zoom in place of in-person meetings, and offering flexible work hours to employees. “We had to scramble,” says Sink, “but we did it, and now that it’s in place, we can do it again.”
The ability to work from home has been particularly impactful for those with mobility challenges. Chad Payette, a dedicated and talented office assistant in Concord, says, “Working from home is great.” Although he does miss his colleagues, Payette has saved significant time by telecommuting. “It’s easier to work more hours from home for somebody like me who needs an aid to drive me to work and help set up my station.” Payette imagines that some of the employment barriers that people with spinal injuries often face, such as reliable transportation and physical workspace adjustments, may be lessened if working from home is more widely offered.
The pandemic has generated real solutions for better employment opportunities for people with disabilities, and our successes should be leveraged, not forgotten once the state reopens.
Further resources:
• NH DHHS COVID-19 Tools for Businesses and Employers https://bit.ly/31ruUIY
• SourcesAmerica (2020). How COVID-19 is Reshaping the Future of Work for Persons with Disabilities https://bit.ly/2Vu27zw
Disclaimer: This article does not contain legal advice and should not be relied upon as legal advice.
Man with prosthetic leg is set up for work in his living room.
Contributor: Tim Sink, President, Greater Concord Chamber of Commerce
Contributor: Chad Payette, Office Assistant, University of New Hampshire Institute on Disability
Romy Eberle is the Marketing and Communications Specialist at the UNH Institute on Disability.
Why Should New Hampshire Return to Business as Usual?
By Romy Eberle
Months have passed since Governor Chris Sununu’s original stay-at-home order went into effect in response to the pandemic. The order, which closed the physical workplace and barred in-person operations of all non-essential businesses, caused many employers to adopt accommodations that allowed their employees to work from the safety of their homes. By forcing people all over the state to shelter in place, the coronavirus introduced Granite Staters to what many people with disabilities have long required to work successfully.
This summer marks the 30th anniversary of the passage of the Americans with Disabilities Act (ADA); an historic event that deserves consideration as we take steps to reopen the economy. The employment section of the ADA is meant to reduce or eliminate the barriers that prevent people with disabilities from obtaining and maintaining employment. The ADA requires covered employers to provide reasonable accommodations to qualified people with disabilities so long as the employee can still do the essential functions of the job. The accommodation must also not create an undue burden for the employer, e.g., if the requested accommodation is excessively difficult for the employer to implement or is prohibitively expensive.
[caption id="attachment_2418" align="alignright" width="386"] Man with prosthetic leg is set up for work in his living room.[/caption]
Individuals with disabilities have long fought for – and often denied – flexibilities that have become a “new normal” during the coronavirus: flexible work hours, remote working environments, and alternative communication formats. This leaves advocates and workers with disabilities wondering if this could mark a turning point for the Granite State by offering more flexible work accommodations. Or, once the pandemic is over, will we return to business as usual?
Tim Sink, President of the Greater Concord Chamber of Commerce, believes the new norm will likely be somewhere in the middle. “I think it will be a mix of how we used to do business and combining it with the best of what we’ve learned during this crucial period,” says Sink. Like the rest of the country, the Greater Concord Chamber of Commerce made several adjustments to remain open during the pandemic, such as hosting virtual board meetings, using Zoom in place of in-person meetings, and offering flexible work hours to employees. “We had to scramble,” says Sink, “but we did it, and now that it’s in place, we can do it again.”
The ability to work from home has been particularly impactful for those with mobility challenges. Chad Payette, a dedicated and talented office assistant in Concord, says, “Working from home is great.” Although he does miss his colleagues, Payette has saved significant time by telecommuting. “It’s easier to work more hours from home for somebody like me who needs an aid to drive me to work and help set up my station.” Payette imagines that some of the employment barriers that people with spinal injuries often face, such as reliable transportation and physical workspace adjustments, may be lessened if working from home is more widely offered.
The pandemic has generated real solutions for better employment opportunities for people with disabilities, and our successes should be leveraged, not forgotten once the state reopens.
Further resources:
• NH DHHS COVID-19 Tools for Businesses and Employers
https://bit.ly/31ruUIY
• SourcesAmerica (2020). How COVID-19 is Reshaping the Future of Work for Persons with Disabilities
https://bit.ly/2Vu27zw
Disclaimer: This article does not contain legal advice and should not be relied upon as legal advice.
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[title] => The ADA and Employment: Raising Awareness. Enhancing Opportunities.
[subtitle] => By Peyton Circulli
[content] =>
One of the many fundamental goals of the Americans with Disabilities Act is to provide equal opportunities for employment to people with disabilities.
Employees with disabilities are productive, resilient, dedicated workers who enhance and diversify their workplace culture. However, in New Hampshire, only 43.8 percent of people with disabilities, ages 18-64, are employed, compared to 82.6 percent of their peers without disabilities.1 Nearly one in five (or 17%) of NH job seekers, ages 18-64, has a disability.2 In order to ensure equal opportunities in the workforce, barriers in the employment hiring processes must be identified, called out, and eliminated.
Employers are required to provide reasonable accommodations throughout the hiring process for job applicants with disabilities.3 Employers and job applicants alike are often not well versed in these rights. In order to have better employment inclusion, more must be done to make the application and hiring processes inclusive. We need to move beyond just meeting the requirements of the ADA in the workplace.
Specifically, in the application process, the ADA requires employers to test applicants in ways that do not require the use of a disability unless the test is designed to measure that particular skill.4 Employers cannot refuse an accommodation because it entails an additional cost unless it results in undue hardship on the employer. Reasonable accommodations can take many forms and may include providing written materials in accessible formats, sign language interpreters, extra time for written tests, modifying equipment or devices, adjusting or modifying application policies and procedures, and ensuring that any in-person step of the application or hiring process is held in an accessible location.5
Despite the optimism at the ADA’s implementation, a great number of employers still appear to have stereotypical views of individuals with disabilities.6 A recent study published by the National Bureau of Economic Research found that potential employers expressed interest in hiring candidates who disclosed a disability about 26 percent less frequently than candidates who did not disclose a disability.7 The results of this study show that there is still much work to be done to eliminate stereotypical views, and to make the hiring process more inclusive.
Many improvements could make the hiring process more inclusive. Specifically, education for both employers and potential applicants is crucial. Applicants must know that they do not have to disclose their disability. If job applicants choose to disclose their disability, they should be able to easily access needed accommodations. Employers need to understand their legal obligations, have accommodations readily accessible, and identify and change hiring processes that support conscious or unconscious bias.
Employers should broaden recruitment processes to be more inclusive. One way for employers to accomplish this is to proactively engage with, and provide outreach to, the disability community. Employers can then discuss job opportunities and encourage those reluctant to apply because of their disability. This engagement will show people
with disabilities how many job opportunities are available to them.
Employers should also modify their application process in order to make it more accessible to those with disabilities. This includes allowing people to apply in a variety of ways, presenting information in clear language, allowing the application to be completed through voice input or keyboard navigation, providing subtitles for videos, and providing multiple ways to contact the employer. By taking these steps and making the application and hiring processes accessible, greater workforce inclusion is possible. Ultimately, this will help to ensure the ADA’s goal of equal employment opportunities for people with disabilities.
Miles Trier has been keeping the staff of the DD Council organized for the past five years.
Peyton Circulli is a DRC-NH Legal Intern.
1 Institute on Disability. (2020). Annual Disability Statistics Compendium: 2019. Durham, NH: University of New Hampshire, Institute on Disability.
2 Id.
3 ADA Compliance Guide ¶ 331 Accommodations for Job Applicants (2016).
4 U.S. Equal Employment Opportunity Commission, Job Applicants and the ADA https://www.eeoc.gov/laws/guidance/job-applicants-and-ada
5 Id.
6 Johnathan R. Mook, Study Shows Disability Discrimination Continues Despite the ADA, 27 No. 11 Va. Emp. L. Letter 5 (2015).
The ADA and Employment: Raising Awareness. Enhancing Opportunities
By Peyton Circulli
One of the many fundamental goals of the Americans with Disabilities Act is to provide equal opportunities for employment to people with disabilities.
Employees with disabilities are productive, resilient, dedicated workers who enhance and diversify their workplace culture. However, in New Hampshire, only 43.8 percent of people with disabilities, ages 18-64, are employed, compared to 82.6 percent of their peers without disabilities.1 Nearly one in five (or 17%) of NH job seekers, ages 18-64, has a disability.2 In order to ensure equal opportunities in the workforce, barriers in the employment hiring processes must be identified, called out, and eliminated.
Employers are required to provide reasonable accommodations throughout the hiring process for job applicants with disabilities.3 Employers and job applicants alike are often not well versed in these rights. In order to have better employment inclusion, more must be done to make the application and hiring processes inclusive. We need to move beyond just meeting the requirements of the ADA in the workplace.
Specifically, in the application process, the ADA requires employers to test applicants in ways that do not require the use of a disability unless the test is designed to measure that particular skill.4 Employers cannot refuse an accommodation because it entails an additional cost unless it results in undue hardship on the employer. Reasonable accommodations can take many forms and may include providing written materials in accessible formats, sign language interpreters, extra time for written tests, modifying equipment or devices, adjusting or modifying application policies and procedures, and ensuring that any in-person step of the application or hiring process is held in an accessible location.5
Despite the optimism at the ADA’s implementation, a great number of employers still appear to have stereotypical views of individuals with disabilities.6 A recent study published by the National Bureau of Economic Research found that potential employers expressed interest in hiring candidates who disclosed a disability about 26 percent less frequently than candidates who did not disclose a disability.7 The results of this study show that there is still much work to be done to eliminate stereotypical views, and to make the hiring process more inclusive.
Many improvements could make the hiring process more inclusive. Specifically, education for both employers and potential applicants is crucial. Applicants must know that they do not have to disclose their disability. If job applicants choose to disclose their disability, they should be able to easily access needed accommodations. Employers need to understand their legal obligations, have accommodations readily accessible, and identify and change hiring processes that support conscious or unconscious bias.
Employers should broaden recruitment processes to be more inclusive. One way for employers to accomplish this is to proactively engage with, and provide outreach to, the disability community. Employers can then discuss job opportunities and encourage those reluctant to apply because of their disability. This engagement will show people
with disabilities how many job opportunities are available to them.
Employers should also modify their application process in order to make it more accessible to those with disabilities. This includes allowing people to apply in a variety of ways, presenting information in clear language, allowing the application to be completed through voice input or keyboard navigation, providing subtitles for videos, and providing multiple ways to contact the employer. By taking these steps and making the application and hiring processes accessible, greater workforce inclusion is possible. Ultimately, this will help to ensure the ADA’s goal of equal employment opportunities for people with disabilities.
[caption id="attachment_2419" align="alignright" width="500"] Miles Trier has been keeping the staff of the DD Council organized for the past five years.[/caption]
Peyton Circulli is a DRC-NH Legal Intern.
1 Institute on Disability. (2020). Annual Disability Statistics Compendium: 2019. Durham, NH: University of New Hampshire, Institute on Disability.
2 Id.
3 ADA Compliance Guide ¶ 331 Accommodations for Job Applicants (2016).
4 U.S. Equal Employment Opportunity Commission, Job Applicants and the ADA
https://www.eeoc.gov/laws/guidance/job-applicants-and-ada
5 Id.
6 Johnathan R. Mook, Study Shows Disability Discrimination Continues Despite the ADA, 27 No. 11 Va. Emp. L. Letter 5 (2015).
Peter Fleming, Vice Chair and Policy Committee Co-Chair of the NH Council for Developmental Disabilities; member of
Self Advocates Leading Together; Advocate NH; Knights of Columbus; Best Buddies International; Special Olympics athlete, coach, and board member; and founding member of the NH Chapter of Best Buddies, passed away on April 20, 2020. Peter spent much of his life representing the disability community and making friends throughout New Hampshire and the United States. Peter’s lifelong dedication to advocacy and his passion for mentoring others was a gift to our community. He leaves behind many family members, friends, teammates, and colleagues. We will miss him greatly.
Deodonne Bhattarai, Isadora Rodriguez-Legendre, and Peter Fleming at the Capital Building in Washington DC during the Disability Policy Seminar.
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Peter Fleming, Vice Chair and Policy Committee Co-Chair of the NH Council for Developmental Disabilities; member of
Self Advocates Leading Together; Advocate NH; Knights of Columbus; Best Buddies International; Special Olympics athlete, coach, and board member; and founding member of the NH Chapter of Best Buddies, passed away on April 20, 2020. Peter spent much of his life representing the disability community and making friends throughout New Hampshire and the United States. Peter’s lifelong dedication to advocacy and his passion for mentoring others was a gift to our community. He leaves behind many family members, friends, teammates, and colleagues.
We will miss him greatly.
[caption id="attachment_2429" align="alignnone" width="405"] Deodonne Bhattarai, Isadora Rodriguez-Legendre, and Peter Fleming at the Capital Building in Washington DC during the Disability Policy Seminar.[/caption]
[post_title] => In Memoriam
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[title] => Universal Design for Learning
[subtitle] => By Susan Shapiro
[content] =>
Educational Settings and the ADA
9 year old Susan Shapiro
When I was nine years old, my mother introduced me to the Killilea family who lived in a large, old house with Newfoundland dogs, just like our family. Mr. Killilea and my grandfather were dear, old friends. Their daughter, Karen, was the first person I’d met who used a wheelchair. The Killilea house was full of antiques and books and things that smelled old. I loved being there, and I remember noticing they had an electric chair lift. It was the first time I witnessed the relationship between user experience and design. Specifically, Karen needed a way to get to the second floor so the Killileas added an option: a moving chair.
After college, I found myself employed as a special education teacher in a small, rural elementary school in New Hampshire. I had five students in my self-contained classroom, each with a label of disability. Our room was located in what used to be the town’s one-room schoolhouse. To this day, I remember our anxiety going down the icy steps and navigating the snowy parking lot with my students – especially Max, who had cerebral palsy and was learning to walk that year. The stress and anxiety my students and I experienced was not the result of their having disabilities; it was the result of a bad design.
“Universal design” is a reminder to building designers that a variety of people are going to be using all sorts of structures, so it’s important to design them to be accessible. The Americans with Disabilities Act (ADA) addresses the issues of barrier-free design as it focuses on disability, and accommodating people with disabilities, in the physical environment.
The ADA ensures that school buildings are made accessible, but physical access alone does not guarantee learning. Are learners with disabilities also able to access the curriculum? In 1990, CAST (the Center for Applied Special Technology), a non-profit organization based in Wakefield, Massachusetts, introduced Universal Design for Learning (UDL) which takes the architectural concept of universal design and applies it to educational settings. UDL is a reminder to learning designers that it is important to create learning environments that are accessible for everyone. If UDL could talk, it might say this: “Think about barriers that learners might face in the learning environment and remove them before the learners get there. Make learning accessible from the start!”
One of the core concepts of UDL is that barriers are in the environment, not the learner. It’s a mindset shift. UDL posits that it is the responsibility of learning designers to think ahead of time about barriers in the curriculum and figure out ways to remove them. For example, an educator showing a film that offers the viewer only one way to make meaning (i.e., listen to the spoken language) poses a barrier to comprehension for some learners. To remove this barrier, closed captions need to be added to the film so that there are two ways for viewers to perceive the content. Thus, the design is made more flexible. UDL is about adding options to learning [think “chair lifts”] where they are needed. It is about proactively building flexibility into designs so that all learners can access all learning. And the flexible options we add (e.g., closed captions, graphic organizers, text-to-voice software) are offered to everyone. After all, I suspect other members of the Killilea family used that chair lift sometimes, too.
To Learn More about Universal Design for Learning, visit the CAST web page: cast.org
To Learn More about accessibility in design, visit the National Accessible Educational Materials (AEM) Center: aem.cast.org
Susan Shapiro is an Implementation Specialist for CAST.
[caption id="attachment_2421" align="alignleft" width="272"] 9 year old Susan Shapiro[/caption]
When I was nine years old, my mother introduced me to the Killilea family who lived in a large, old house with Newfoundland dogs, just like our family. Mr. Killilea and my grandfather were dear, old friends. Their daughter, Karen, was the first person I’d met who used a wheelchair. The Killilea house was full of antiques and books and things that smelled old. I loved being there, and I remember noticing they had an electric chair lift. It was the first time I witnessed the relationship between user experience and design. Specifically, Karen needed a way to get to the second floor so the Killileas added an option: a moving chair.
After college, I found myself employed as a special education teacher in a small, rural elementary school in New Hampshire. I had five students in my self-contained classroom, each with a label of disability. Our room was located in what used to be the town’s one-room schoolhouse. To this day, I remember our anxiety going down the icy steps and navigating the snowy parking lot with my students – especially Max, who had cerebral palsy and was learning to walk that year. The stress and anxiety my students and I experienced was not the result of their having disabilities; it was the result of a bad design.
“Universal design” is a reminder to building designers that a variety of people are going to be using all sorts of structures, so it’s important to design them to be accessible. The Americans with Disabilities Act (ADA) addresses the issues of barrier-free design as it focuses on disability, and accommodating people with disabilities, in the physical environment.
The ADA ensures that school buildings are made accessible, but physical access alone does not guarantee learning. Are learners with disabilities also able to access the curriculum? In 1990, CAST (the Center for Applied Special Technology), a non-profit organization based in Wakefield, Massachusetts, introduced Universal Design for Learning (UDL) which takes the architectural concept of universal design and applies it to educational settings. UDL is a reminder to learning designers that it is important to create learning environments that are accessible for everyone. If UDL could talk, it might say this: “Think about barriers that learners might face in the learning environment and remove them before the learners get there. Make learning accessible from the start!”
One of the core concepts of UDL is that barriers are in the environment, not the learner. It’s a mindset shift. UDL posits that it is the responsibility of learning designers to think ahead of time about barriers in the curriculum and figure out ways to remove them. For example, an educator showing a film that offers the viewer only one way to make meaning (i.e., listen to the spoken language) poses a barrier to comprehension for some learners. To remove this barrier, closed captions need to be added to the film so that there are two ways for viewers to perceive the content. Thus, the design is made more flexible. UDL is about adding options to learning [think “chair lifts”] where they are needed. It is about proactively building flexibility into designs so that all learners can access all learning. And the flexible options we add (e.g., closed captions, graphic organizers, text-to-voice software) are offered to everyone. After all, I suspect other members of the Killilea family used that chair lift sometimes, too.
To Learn More about Universal Design for Learning, visit the CAST web page: cast.org
To Learn More about accessibility in design, visit the National Accessible Educational Materials (AEM) Center: aem.cast.org
Susan Shapiro is an Implementation Specialist for CAST.
The Council is dedicated to dignity, full rights of citizenship, cultural diversity, equal opportunity, and full participation for all NH citizens with developmental disabilities.
Handmade Unity banner with disability iconsJune 2020: Participants at an Accessible Black Lives Matter event and African Burying Ground ceremonyASL Interpreter, Brandon Kazen-Maddox, and Event Organizer, Deb Opramolla
“All people have a right to assembly,and a right to support the causes they care about.
As a disabled person, it is important for me to support disability-related causes, but also to support equally important calls for liberation such as the Black Lives Matter movement. We are stronger when we lift each other up. All activism must
be accessible to ensure that all perspectives are being heard.”
— Juliana Good, Accessible Black Lives Matter event
organizer and advocate for people with disabilities
The NH Council on Developmental Disabilities believes that the opportunity to participate in community engagement and activism should be available to everyone. The DD Council is proud to have provided funding for American Sign Language interpreters for a recent Accessible Black Lives Matter demonstration that took place in downtown Portsmouth, NH on Friday, June 26, 2020. We would like to thank Juliana Good and Deborah Opramolla for organizing the event in support of the Black Lives Matter movement, and for making full participation a reality for people with disabilities.
The Council is dedicated to dignity, full rights of citizenship, cultural diversity, equal opportunity, and full participation for all NH citizens with developmental disabilities.
[caption id="attachment_2422" align="alignright" width="300"] Handmade Unity banner with disability icons[/caption]
[caption id="attachment_2423" align="alignright" width="300"] June 2020: Participants at an Accessible Black Lives Matter event and African Burying Ground ceremony[/caption]
[caption id="attachment_2424" align="alignright" width="300"] ASL Interpreter, Brandon Kazen-Maddox, and Event Organizer, Deb Opramolla[/caption]
“All people have a right to assembly,and a right to support the causes they care about.
As a disabled person, it is important for me to support disability-related causes, but also to support equally important calls for liberation such as the Black Lives Matter movement. We are stronger when we lift each other up. All activism must
be accessible to ensure that all perspectives are being heard.”
— Juliana Good, Accessible Black Lives Matter event
organizer and advocate for people with disabilities
The NH Council on Developmental Disabilities believes that the opportunity to participate in community engagement and activism should be available to everyone. The DD Council is proud to have provided funding for American Sign Language interpreters for a recent Accessible Black Lives Matter demonstration that took place in downtown Portsmouth, NH on Friday, June 26, 2020. We would like to thank Juliana Good and Deborah Opramolla for organizing the event in support of the Black Lives Matter movement, and for making full participation a reality for people with disabilities.
DRC-NH is dedicated to eliminating barriers for people with disabilities across the state. Contact us to schedule a free consultation on a disability discrimination issue with an experienced attorney.
Know Your Rights: Issue Area Spotlights
Special Education and COVID-19
Students and schoolwork
Children with disabilities are among the most vulnerable students in the COVID-19 public health crisis. As students with disabilities return to school after missing significant instructional time and related services in the spring and summer, schools must develop plans that include in-person, hybrid, and remote instructional models to meet their needs. Schools must comply with the federal Individuals with Disabilities Education Act (IDEA) and state R.S.A. 186-C – the civil rights laws which require them to offer a free appropriate public education in the least restrictive environment to every child with a disability.
Children with disabilities are entitled to Individualized Education Programs (IEPs) that are designed to meet their unique needs. Governor Sununu’s Emergency Order #48 and other guidance recognize that one-size-fits-all solutions are not appropriate for students with disabilities and calls schools to act accordingly. If you are not able to get the services that your child needs, you can call or email us for assistance.
Accessible Voting During COVID-19
NH Votes logo
People with disabilities have the right to vote privately, independently, and safely, whether they vote in personon Election Day or via absentee ballot. With COVID-19 concerns, this is even more important. In July 2020, DRC-NH and Brown, Goldstein & Levy filed a lawsuit on behalf of National Federation of the Blind, National Federation of the Blind New Hampshire, Granite State Independent Living, and several individuals seeking the implementation of an accessible system for electronic delivery and marking of absentee ballots by voters who are blind or who have other physical disabilities, and an accessible process for voters to register to vote and request an absentee ballot. We are committed to protecting the voting rights of people with disabilities. Call or email us if you encounter any voting barriers as you register and/or vote, and visit drcnh.org for the most up-to-date information on the lawsuit.
Abuse and Neglect · Access and Accomodation · Children’s Issues and Special Education · Employment · Housing · Medicaid and Healthcare · Mental Health · Traumatic Brain Injury · Voting
DRC-NH is dedicated to eliminating barriers for people with disabilities across the state. Contact us to schedule a free consultation on a disability discrimination issue with an experienced attorney.
Know Your Rights: Issue Area Spotlights
Special Education and COVID-19
[caption id="attachment_2425" align="alignleft" width="300"] Students and schoolwork[/caption]
Children with disabilities are among the most vulnerable students in the COVID-19 public health crisis. As students with disabilities return to school after missing significant instructional time and related services in the spring and summer, schools must develop plans that include in-person, hybrid, and remote instructional models to meet their needs. Schools must comply with the federal Individuals with Disabilities Education Act (IDEA) and state R.S.A. 186-C – the civil rights laws which require them to offer a free appropriate public education in the least restrictive environment to every child with a disability.
Children with disabilities are entitled to Individualized Education Programs (IEPs) that are designed to meet their unique needs. Governor Sununu’s Emergency Order #48 and other guidance recognize that one-size-fits-all solutions are not appropriate for students with disabilities and calls schools to act accordingly. If you are not able to get the services that your child needs, you can call or email us for assistance.
People with disabilities have the right to vote privately, independently, and safely, whether they vote in personon Election Day or via absentee ballot. With COVID-19 concerns, this is even more important. In July 2020, DRC-NH and Brown, Goldstein & Levy filed a lawsuit on behalf of National Federation of the Blind, National Federation of the Blind New Hampshire, Granite State Independent Living, and several individuals seeking the implementation of an accessible system for electronic delivery and marking of absentee ballots by voters who are blind or who have other physical disabilities, and an accessible process for voters to register to vote and request an absentee ballot. We are committed to protecting the voting rights of people with disabilities. Call or email us if you encounter any voting barriers as you register and/or vote, and visit drcnh.org for the most up-to-date information on the lawsuit.
Abuse and Neglect · Access and Accomodation · Children’s Issues and Special Education · Employment · Housing · Medicaid and Healthcare · Mental Health · Traumatic Brain Injury · Voting
This publication was supported solely by federal funding from grants from the U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration; U.S. Department of Health and Human Services, Administration for Community Living/Administration on Intellectual and Developmental Disabilities; U.S. Department of Education, Department of Rehabilitation Services; Social Security Administration; and a grant from the New Hampshire Bar Foundation.
The contents are solely the responsibility of the grantees and do not necessarily represent the official views of the grantors.
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Amidst the current isolation we are feeling related to COVID-19, the importance of human connection and the role relationships have on our physical, emotional, and mental health has never felt more timely. We bring this issue to you with open hearts and hopes for better days ahead.
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[title] => The Intersection of Disability and Sexuality
[subtitle] => Spring 2020 Issue
[content] => Couple holding hands
Theme overview
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
We want to hear from you. Please share your ideas for future themes, or your suggestions of how we can increase accessibility, by emailingmail@drcnh.org.
Spring 2020 Disability RAPP: The Intersection of Disability and Sexuality Issue Overview
Amidst the current isolation we are feeling related to COVID-19, the importance of human connection and the role relationships have on our physical, emotional, and mental health has never felt more timely. We bring this issue to you with open hearts and hopes for better days ahead.
Couple holding hands
Theme overview
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
We want to hear from you. Please share your ideas for future themes, or your suggestions of how we can increase accessibility, by emailingmail@drcnh.org.
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
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[title] => Finding Love with Common Ground
[subtitle] => By Vanessa Blais, Project Manager with the NH Council on Developmental Disabilities
[content] => Happily married! Jim Piet and Pat Vincent-Piet on their wedding day.
Two Perspectives. One Future.
Jim Piet and his wife, Pat Vincent-Piet, had very different experiences growing up with Cerebral Palsy (CP). Their story is one of faith in themselves – and the undeniable laws of attraction.
“Pat and I grew up much differently, but we landed in the same place,” shares Jim Piet. “I was in a segregated environment from the age of four because my own community did not have the ability to support a person like me in its public school. There were no services. Pat, on the other hand, grew up in an inclusive environment in public school.”
Jim Piet spent his young life surrounded by professionals and peers with similar disabilities.
Pat Vincent-Piet did not realize the reality of her disability when she was young. She was never treated differently by her family, and never had any special accommodations at school or in her community. However, she knew that she was somehow different from her peers.
Once, when Jim and Pat were on a date, Jim jumped at a loud noise. Pat shared with Jim that she did the same thing. “I didn’t realize that my reflexes and physical quirks were associated with my Cerebral Palsy,” says Pat Vincent-Piet. “Jim became the first person I could talk to. I never had a close friend with a disability.”
When asked how Jim used to feel about the idea of having a relationship and a family he replied, “I had a speech therapist that had a similar disability. He could feed himself and drive his own car. He went to college and got married and had a family. I think he gave my parents hope that life with someone could be possible with the right support.”
Dating Life
Pat was in the process of going through the NH Leadership Series course when she met Jim, who was a presenter. She felt strongly that she needed to talk with him to get information about life with Cerebral Palsy. “I actually tracked him down,” Pat says. “I went to an expo where I knew he’d attend. There is something attractive about being around someone who has an understanding of your experience, and it didn’t hurt that he wasn’t bad looking! He was the first other adult with CP that I met who was living with quality of life on his own.”
Jim and Pat have had some unique dating experiences.
Jim recounts, “The first time we ate together alone she tried to use different utensils for herself and for me. It was too confusing and eventually she asked if it was ok to use the same fork. Now, we not only share our meal, we share our utensils.”
Bathroom mishaps seem to be a recurring theme. The couple tells of a visit to the Chunky’s movie theater men’s room where the accessible stall was not big enough for both of them. They ended up in the middle of the room next to the urinals. A man came in and began to relieve himself at the urinal next to them. They returned to the theater where a dramatic disaster movie called Day After Tomorrow was playing. “We were laughing hysterically when we walked into the theater,” laughs Pat. “I can only imagine what people were thinking.”
Then, there was the first time Pat stayed the night at Jim’s house. “I knew we were going on a date, but I didn’t know how far this date was going, so I didn’t inform my morning aide that she would be there,” Jim shares. “The aide walked into the bedroom and there was Pat”.
“Fortunately, she and I knew each other,” Pat laughs.
Jim, Pat, and Katelin celebrate together in 2004.
Celebrating Resilience
Pat’s daughter, Katelin, was four years old when Pat began dating Jim. When asked what Katelin originally thought of Jim, Pat replies, “Jim was not what she had in mind. She asked me if we were going to get married very early on. I said, ‘I don’t know, maybe. Would that be ok?’ She said, ‘No, I want you to marry someone dashing!’ She wanted me to marry my chiropractor.”
Jim and Pat now agree that having two parents with disabilities makes Katelin a very independent person. “It makes you realize how capable children are,” shares Pat.
Most people were very supportive of Pat and Jim getting married. Jim’s grandmother was especially thrilled that Pat was marrying “Jimmy.” Pat had an uncle that expressed concern that she was taking on a lot, but Pat brushed it off because she felt that he didn’t understand. “Everyone who knew us well was supportive,” Pat comments.
Jim’s advice to parents who question whether a relationship will be a part of their child’s future is to ask themselves what they would say to a child without a disability. He adds that becoming comfortable with your disability is very important. “If you are, people will sense it right away,” Jim says. “Don’t make it shine. Don’t make it who you are. Just start a regular conversation.
Let them know WHO you are as a person.”
Life is full of shared experiences for the Piet family.
“Concentrate on the things you have in common,” Jim relates. “Shared life experience is so important. If you believe you can have a connection with someone, then you can have a relationship.”
“There is more and more representation out there showing people with disabilities in relationships,” Pat adds. “You can find them on YouTube, TV shows, and movies. Seeing and hearing from those who have the same experiences – and have carved a life for themselves – is truly rewarding. People living with disabilities should be exposed to these wonderful stories of hope.”
Vanessa A. C. Blais is a Project Manager with the NH Council on
Developmental Disabilities.
By Vanessa Blais, Project Manager with the NH Council on Developmental Disabilities
Happily married! Jim Piet and Pat Vincent-Piet on their wedding day.Two Perspectives. One Future.
Jim Piet and his wife, Pat Vincent-Piet, had very different experiences growing up with Cerebral Palsy (CP). Their story is one of faith in themselves – and the undeniable laws of attraction.
“Pat and I grew up much differently, but we landed in the same place,” shares Jim Piet. “I was in a segregated environment from the age of four because my own community did not have the ability to support a person like me in its public school. There were no services. Pat, on the other hand, grew up in an inclusive environment in public school.”
Jim Piet spent his young life surrounded by professionals and peers with similar disabilities.
Pat Vincent-Piet did not realize the reality of her disability when she was young. She was never treated differently by her family, and never had any special accommodations at school or in her community. However, she knew that she was somehow different from her peers.
Once, when Jim and Pat were on a date, Jim jumped at a loud noise. Pat shared with Jim that she did the same thing. “I didn’t realize that my reflexes and physical quirks were associated with my Cerebral Palsy,” says Pat Vincent-Piet. “Jim became the first person I could talk to. I never had a close friend with a disability.”
When asked how Jim used to feel about the idea of having a relationship and a family he replied, “I had a speech therapist that had a similar disability. He could feed himself and drive his own car. He went to college and got married and had a family. I think he gave my parents hope that life with someone could be possible with the right support.”
Dating Life
Pat was in the process of going through the NH Leadership Series course when she met Jim, who was a presenter. She felt strongly that she needed to talk with him to get information about life with Cerebral Palsy. “I actually tracked him down,” Pat says. “I went to an expo where I knew he’d attend. There is something attractive about being around someone who has an understanding of your experience, and it didn’t hurt that he wasn’t bad looking! He was the first other adult with CP that I met who was living with quality of life on his own.”
Jim and Pat have had some unique dating experiences.
Jim recounts, “The first time we ate together alone she tried to use different utensils for herself and for me. It was too confusing and eventually she asked if it was ok to use the same fork. Now, we not only share our meal, we share our utensils.”
Bathroom mishaps seem to be a recurring theme. The couple tells of a visit to the Chunky’s movie theater men’s room where the accessible stall was not big enough for both of them. They ended up in the middle of the room next to the urinals. A man came in and began to relieve himself at the urinal next to them. They returned to the theater where a dramatic disaster movie called Day After Tomorrow was playing. “We were laughing hysterically when we walked into the theater,” laughs Pat. “I can only imagine what people were thinking.”
Then, there was the first time Pat stayed the night at Jim’s house. “I knew we were going on a date, but I didn’t know how far this date was going, so I didn’t inform my morning aide that she would be there,” Jim shares. “The aide walked into the bedroom and there was Pat”.
“Fortunately, she and I knew each other,” Pat laughs.
Jim, Pat, and Katelin celebrate together in 2004.
Celebrating Resilience
Pat’s daughter, Katelin, was four years old when Pat began dating Jim. When asked what Katelin originally thought of Jim, Pat replies, “Jim was not what she had in mind. She asked me if we were going to get married very early on. I said, ‘I don’t know, maybe. Would that be ok?’ She said, ‘No, I want you to marry someone dashing!’ She wanted me to marry my chiropractor.”
Jim and Pat now agree that having two parents with disabilities makes Katelin a very independent person. “It makes you realize how capable children are,” shares Pat.
Most people were very supportive of Pat and Jim getting married. Jim’s grandmother was especially thrilled that Pat was marrying “Jimmy.” Pat had an uncle that expressed concern that she was taking on a lot, but Pat brushed it off because she felt that he didn’t understand. “Everyone who knew us well was supportive,” Pat comments.
Jim’s advice to parents who question whether a relationship will be a part of their child’s future is to ask themselves what they would say to a child without a disability. He adds that becoming comfortable with your disability is very important. “If you are, people will sense it right away,” Jim says. “Don’t make it shine. Don’t make it who you are. Just start a regular conversation.
Let them know WHO you are as a person.”
Life is full of shared experiences for the Piet family.
“Concentrate on the things you have in common,” Jim relates. “Shared life experience is so important. If you believe you can have a connection with someone, then you can have a relationship.”
“There is more and more representation out there showing people with disabilities in relationships,” Pat adds. “You can find them on YouTube, TV shows, and movies. Seeing and hearing from those who have the same experiences – and have carved a life for themselves – is truly rewarding. People living with disabilities should be exposed to these wonderful stories of hope.”
Vanessa A. C. Blais is a Project Manager with the NH Council on
Developmental Disabilities.
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
What are the opportunities for, and barriers to, meaningful relationships? Take this 15-minute survey and tell us what you think!
Are friendships important to you? Take this survey!
The University of New Hampshire and Boston University Wheelock College are collaborating on a research study to improve our understanding of supporting and creating meaningful relationships among people with – and without – disabilities. If you would like to help us identify what works and what doesn’t, visit:
What are the opportunities for, and barriers to, meaningful relationships? Take this 15-minute survey and tell us what you think!
Are friendships important to you? Take this survey!
The University of New Hampshire and Boston University Wheelock College are collaborating on a research study to improve our understanding of supporting and creating meaningful relationships among people with – and without – disabilities. If you would like to help us identify what works and what doesn’t, visit:
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
Over the past decade, marriage equality has become part of the common vernacular. Marriage is a choice for people of all races, genders, and sexual orientations. The only people routinely left out of this conversation are people with disabilities.
Living with a disability can be incredibly expensive. Many people with disabilities depend on Medicaid to access the services and supports they need every day to get dressed, eat, and take care of basic needs. These supports can cost thousands of dollars a month and are not typically covered by private insurance. Many people with disabilities who are unable to work rely on Supplemental Security Income (SSI), or Social Security Disability Income (SSDI), to cover their basic living expenses.
People with and without disabilities get married so they can formally profess their commitment to another person. People with disabilities should not be forced to contemplate divorce in order to obtain the healthcare that they need. However, marriage – or sometimes even a committed relationship – is off limits for many who depend on Medicaid, SSI, and SSDI because the joining together of income and resources can make a couple’s income and assets too high for the person with a disability to remain eligible for the services they rely on.
In New Hampshire, when only one spouse of a married couple is applying for nursing home Medicaid or a Medicaid waiver, only the income of the applicant is counted. However, this is not the case for regular Medicaid, which many people with disabilities rely on, where the income of both spouses is included towards the income limit of the applicant. Only a few assets are exempt from the asset calculations that determine eligibility for programs used by people with disabilities; depending on the specific program, only a minimal amount of cash and personal property, a vehicle, or a home may be excluded. Additionally, many of the income and asset limits used in determining eligibility are prohibitively low as they have been in place since 1989, with few adjustments for inflation.
The right of people with disabilities to marry is undermined by current policies around eligibility. People with disabilities are being forced to remain single or divorce so that they can keep the services they rely on to live. As laws are implemented to ensure marriage equality for all, policy makers need to recognize that the current eligibility calculations for Medicaid and other programs are outdated and equate to a marriage penalty for people with disabilities.
Stephanie Patrick is the Executive Director of Disability Rights Center – New Hampshire
For more NH-specific information on this topic, visit:
The Marriage Paradigm: Finding Love. Losing Eligibility.
By Stephanie Patrick, Executive Director of Disability Rights Center – New Hampshire
Over the past decade, marriage equality has become part of the common vernacular. Marriage is a choice for people of all races, genders, and sexual orientations. The only people routinely left out of this conversation are people with disabilities.
Living with a disability can be incredibly expensive. Many people with disabilities depend on Medicaid to access the services and supports they need every day to get dressed, eat, and take care of basic needs. These supports can cost thousands of dollars a month and are not typically covered by private insurance. Many people with disabilities who are unable to work rely on Supplemental Security Income (SSI), or Social Security Disability Income (SSDI), to cover their basic living expenses.
People with and without disabilities get married so they can formally profess their commitment to another person. People with disabilities should not be forced to contemplate divorce in order to obtain the healthcare that they need. However, marriage – or sometimes even a committed relationship – is off limits for many who depend on Medicaid, SSI, and SSDI because the joining together of income and resources can make a couple’s income and assets too high for the person with a disability to remain eligible for the services they rely on.
In New Hampshire, when only one spouse of a married couple is applying for nursing home Medicaid or a Medicaid waiver, only the income of the applicant is counted. However, this is not the case for regular Medicaid, which many people with disabilities rely on, where the income of both spouses is included towards the income limit of the applicant. Only a few assets are exempt from the asset calculations that determine eligibility for programs used by people with disabilities; depending on the specific program, only a minimal amount of cash and personal property, a vehicle, or a home may be excluded. Additionally, many of the income and asset limits used in determining eligibility are prohibitively low as they have been in place since 1989, with few adjustments for inflation.
The right of people with disabilities to marry is undermined by current policies around eligibility. People with disabilities are being forced to remain single or divorce so that they can keep the services they rely on to live. As laws are implemented to ensure marriage equality for all, policy makers need to recognize that the current eligibility calculations for Medicaid and other programs are outdated and equate to a marriage penalty for people with disabilities.
Stephanie Patrick is the Executive Director of Disability Rights Center – New Hampshire
For more NH-specific information on this topic, visit:
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
According to the Bureau of Justice Statistics, National Crime Victimization Survey, Special Tabulation, and the National Public Radio series, Abused and Betrayed, people with Intellectual/Developmental Disabilities (I/DD) are seven times more likely to be sexual abused than those without.1
Here are steps to reduce this statistic:
• Believe we are all sexual beings – including people with I/DD – and that we all need sexuality education
• Provide age appropriate, medically accurate, sexuality education
• Provide positive messages – not fear-based language – about sexuality
• Empower individuals with I/DD to be sexual self-advocates
• Train individuals with I/DD to be sexuality educators
• Increase training opportunities for staff, caregivers, and self-advocates regarding individuals with I/DD and sexuality education
Sexuality education is the first line of defense for all people, but especially those with developmental disabilities. Even if you agree that sexuality education is important, there are many reasons why you might not want to talk about it:
• You may not know how to begin, or what topics to cover.
• You may know what to say, but don’t know how old a person should be before you start the conversation.
• You may fear that talking about it will encourage sexual activity.
• You may not even know what you believe regarding sexuality.
But you can learn! In collaboration with Community Support Network Inc., the Developmental Disabilities Council, and Elevatus Training, there will soon be an all-day, Concord-based training for parents and professionals on how to address sexuality and sexual abuse prevention, and an all-day workshop for people with disabilities on Becoming a Sexual Self-Advocate. By providing accurate and practical educational materials and trainings we hope to elevate, educate, and navigate this topic. Many people have said that talking about sexuality was much easier than they thought it would be, and have gained confidence in this area with just a little support.
Statewide sexuality trainings are a powerful, proactive step towards empowering and educating individuals with I/DD, and helping to identify and prevent sexual abuse. Let’s all work on helping people with I/DD lead healthy lives with positive and enriching relationships. Together, we can make a difference.
Katherine McLaughlin, M.Ed. trains individuals, staff, and parents on sexuality and developmental disabilities. ElevatusTraining.com
1 Bureau of Justice Statistics, National Crime Victimization Survey, Special Tabulation.
According to the Bureau of Justice Statistics, National Crime Victimization Survey, Special Tabulation, and the National Public Radio series, Abused and Betrayed, people with Intellectual/Developmental Disabilities (I/DD) are seven times more likely to be sexual abused than those without.1
Here are steps to reduce this statistic:
• Believe we are all sexual beings – including people with I/DD – and that we all need sexuality education
• Provide age appropriate, medically accurate, sexuality education
• Provide positive messages – not fear-based language – about sexuality
• Empower individuals with I/DD to be sexual self-advocates
• Train individuals with I/DD to be sexuality educators
• Increase training opportunities for staff, caregivers, and self-advocates regarding individuals with I/DD and sexuality education
Sexuality education is the first line of defense for all people, but especially those with developmental disabilities. Even if you agree that sexuality education is important, there are many reasons why you might not want to talk about it:
• You may not know how to begin, or what topics to cover.
• You may know what to say, but don’t know how old a person should be before you start the conversation.
• You may fear that talking about it will encourage sexual activity.
• You may not even know what you believe regarding sexuality.
But you can learn! In collaboration with Community Support Network Inc., the Developmental Disabilities Council, and Elevatus Training, there will soon be an all-day, Concord-based training for parents and professionals on how to address sexuality and sexual abuse prevention, and an all-day workshop for people with disabilities on Becoming a Sexual Self-Advocate. By providing accurate and practical educational materials and trainings we hope to elevate, educate, and navigate this topic. Many people have said that talking about sexuality was much easier than they thought it would be, and have gained confidence in this area with just a little support.
Statewide sexuality trainings are a powerful, proactive step towards empowering and educating individuals with I/DD, and helping to identify and prevent sexual abuse. Let’s all work on helping people with I/DD lead healthy lives with positive and enriching relationships. Together, we can make a difference.
Katherine McLaughlin, M.Ed. trains individuals, staff, and parents on sexuality and developmental disabilities. ElevatusTraining.com
1 Bureau of Justice Statistics, National Crime Victimization Survey, Special Tabulation.
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
[post_title] => Knowledge is Power: Teaching Sexual Self-Advocacy
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[title] => The Right to Sexual Relationships
[subtitle] => By Stephanie Patrick, Executive Director of Disability Rights Center – New Hampshire
[content] => Graphic of scales of justice with a heart on one side and the male/female symbols on the other.
In a world where we classify, sort, separate, and stigmatize, it is important to remember that people with all types of disabilities are sexual beings, with the same diversity of sexual desires and interests as people without disabilities. The American Association on Intellectual and Developmental Disabilities puts it this way:
“People with intellectual disabilities and/or developmental disabilities, like all people, have inherent sexual rights. These rights and needs must be affirmed, defended, and respected.”
There is an ugly history of forced sterilization and other violations of the sexual and reproductive rights of people with disabilities. “Between 1918 and 1960, when the policy was abolished, 450 residents (of Laconia State School) were sterilized, three-fourths of which were women. For many years, sterilization was a requirement for a resident’s release.”1 Though involuntary sterilization for people with disabilities is no longer commonplace, discussions about the sexual and reproductive rights of people with disabilities are also rare. This lack of information may lead to emotional and physical vulnerability, as well as misinformation and risky sexual behaviors.
It is critical that agencies and service providers promote healthy sexual relationships for the people with disabilities they serve. Service providers must train and support Direct Support Personnel (DSPs) to address sexuality and the sexual needs of the people they support. Sex education and family planning are critical elements of person-centered planning and, yet, they are often omitted.
Having a disability does not equate to a loss of sexuality.
Service providers and DSPs must recognize and understand how their own feelings about sexuality, reproductive justice, and sexual orientation are impacting the people they serve. “…there remains, for the vast majority of people with Intellectual/Developmental Disabilities (I/DD), a major area of deprivation and inequality, a lack of opportunity, choice, and the inherent right to develop and participate in social relationships which may involve sexual expression. The barrier lies not in the inability to develop responsible social and sexual behaviors, but in the misapprehensions and collective negative attitudes of some administrators, professionals, family members and the uninformed general public… The issue is over-control and a denial of basic human rights.”2 Service providers and DSPs must be trained to leave their personal biases at home so that they can support people with disabilities to make their own decisions while providing current, fact-based information around sexual health, contraception, and consent.
Service providers must also consider how their organizational policies and practices help promote or hinder healthy physical relationships. Restrictions on overnight visitors, lack of supports for dates, restrictions on alone time, or lack of privacy in discussions with healthcare professionals are all common policy-based barriers that people with disabilities face. People with disabilities must be allowed to determine the types of physical relationships they want and then be given the supports to make these happen. Instead of policies and practices that prevent healthy relationships, policies should allow sexual relations between consenting adults in the privacy of a bedroom.
Discussions of sex and reproductive health can be uncomfortable, regardless of whether the discussion involves a person with a disability, but service providers and direct support staff must be trained to face these conversations directly. People with disabilities want relationships. Open lines of communication about sexuality and sexual relationships, including information related to same-sex relationships, are critical. Important topics to discuss include:
• Safe sex and reproductive health
• Consent
• Sexuality and sexual orientation
• How to define healthy relationships
• How to find healthy relationships
These discussions must be presented in a format that is accessible and appropriate to the person with the disability. This might mean using pictures or role play to facilitate the discussions. Without this knowledge, people with disabilities may not be able to recognize unhealthy or negative relationships in order to understand that they deserve better. Discussions of sexual topics must include opportunities for people with disabilities to ask questions and advocate for themselves in confidential spaces without fear of repercussions or stigma.
While family members, guardians, and service providers may help to facilitate these conversations, they can also be a barrier. Conversations with doctors about birth control, sexually
tranmissable infections (STIs), and sexual health should be private unless the person with the disability requests support. The person with the disability should decide who to include in these conversations; discussions with the entire services team (case manager, provider, direct support worker, parents, etc.) without the okay of the person with disabilities are not acceptable.
Adults with disabilities are sexual beings with diverse needs, desires, and interests that must be respected and applauded. Family, agencies, and service providers must broach discussions of sexuality and reproductive health with a willingness to listen and openness to whatever they hear.
Stephanie Patrick is the Executive Director of Disability Rights Center – New Hampshire
1 http://bit.ly/2TVFowh
2 Ames, R. & Samowitz, P. (1999). Viewpoint [published by AAMR].
By Stephanie Patrick, Executive Director of Disability Rights Center – New Hampshire
Graphic of scales of justice with a heart on one side and the male/female symbols on the other.
In a world where we classify, sort, separate, and stigmatize, it is important to remember that people with all types of disabilities are sexual beings, with the same diversity of sexual desires and interests as people without disabilities. The American Association on Intellectual and Developmental Disabilities puts it this way:
“People with intellectual disabilities and/or developmental disabilities, like all people, have inherent sexual rights. These rights and needs must be affirmed, defended, and respected.”
There is an ugly history of forced sterilization and other violations of the sexual and reproductive rights of people with disabilities. “Between 1918 and 1960, when the policy was abolished, 450 residents (of Laconia State School) were sterilized, three-fourths of which were women. For many years, sterilization was a requirement for a resident’s release.”1 Though involuntary sterilization for people with disabilities is no longer commonplace, discussions about the sexual and reproductive rights of people with disabilities are also rare. This lack of information may lead to emotional and physical vulnerability, as well as misinformation and risky sexual behaviors.
It is critical that agencies and service providers promote healthy sexual relationships for the people with disabilities they serve. Service providers must train and support Direct Support Personnel (DSPs) to address sexuality and the sexual needs of the people they support. Sex education and family planning are critical elements of person-centered planning and, yet, they are often omitted.
Having a disability does not equate to a loss of sexuality.
Service providers and DSPs must recognize and understand how their own feelings about sexuality, reproductive justice, and sexual orientation are impacting the people they serve. “…there remains, for the vast majority of people with Intellectual/Developmental Disabilities (I/DD), a major area of deprivation and inequality, a lack of opportunity, choice, and the inherent right to develop and participate in social relationships which may involve sexual expression. The barrier lies not in the inability to develop responsible social and sexual behaviors, but in the misapprehensions and collective negative attitudes of some administrators, professionals, family members and the uninformed general public… The issue is over-control and a denial of basic human rights.”2 Service providers and DSPs must be trained to leave their personal biases at home so that they can support people with disabilities to make their own decisions while providing current, fact-based information around sexual health, contraception, and consent.
Service providers must also consider how their organizational policies and practices help promote or hinder healthy physical relationships. Restrictions on overnight visitors, lack of supports for dates, restrictions on alone time, or lack of privacy in discussions with healthcare professionals are all common policy-based barriers that people with disabilities face. People with disabilities must be allowed to determine the types of physical relationships they want and then be given the supports to make these happen. Instead of policies and practices that prevent healthy relationships, policies should allow sexual relations between consenting adults in the privacy of a bedroom.
Discussions of sex and reproductive health can be uncomfortable, regardless of whether the discussion involves a person with a disability, but service providers and direct support staff must be trained to face these conversations directly. People with disabilities want relationships. Open lines of communication about sexuality and sexual relationships, including information related to same-sex relationships, are critical. Important topics to discuss include:
• Safe sex and reproductive health
• Consent
• Sexuality and sexual orientation
• How to define healthy relationships
• How to find healthy relationships
These discussions must be presented in a format that is accessible and appropriate to the person with the disability. This might mean using pictures or role play to facilitate the discussions. Without this knowledge, people with disabilities may not be able to recognize unhealthy or negative relationships in order to understand that they deserve better. Discussions of sexual topics must include opportunities for people with disabilities to ask questions and advocate for themselves in confidential spaces without fear of repercussions or stigma.
While family members, guardians, and service providers may help to facilitate these conversations, they can also be a barrier. Conversations with doctors about birth control, sexually
tranmissable infections (STIs), and sexual health should be private unless the person with the disability requests support. The person with the disability should decide who to include in these conversations; discussions with the entire services team (case manager, provider, direct support worker, parents, etc.) without the okay of the person with disabilities are not acceptable.
Adults with disabilities are sexual beings with diverse needs, desires, and interests that must be respected and applauded. Family, agencies, and service providers must broach discussions of sexuality and reproductive health with a willingness to listen and openness to whatever they hear.
Stephanie Patrick is the Executive Director of Disability Rights Center – New Hampshire
1 http://bit.ly/2TVFowh
2 Ames, R. & Samowitz, P. (1999). Viewpoint [published by AAMR].
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
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[title] => Five Things You Should Know Before You Take a Crip to Bed
[subtitle] => By Galen Spiegler
[content] =>
This article contains sensitive material which may not be appropriate for all readers.
The sexuality of people who live with disabilities is exceptionally nuanced. In fact, there are entire books on the societal forces that push and pull on Crip sexuality. I am going to give you five pieces of advice to keep in mind when having an intimate relationship with a person living with a physical disability.
1. Create Time to Prepare
In today’s sex culture, there is an idea, perpetrated by the media, that a person sees a sexy individual, grabs them, runs to a private place, and immediately has intercourse. This storyline is untrue for everyone, but especially for Crips. When a Crip wants to be sexually active, there is preparation that must happen in order for them to feel attractive and ready for intimacy. Often this preparation looks like a couple of minutes with a caregiver to clean up and prep in order to feel good in their body.
2. Great Crip Intimacy Makes its Own Schedule
After an aid leaves, the Crip and the lover have to get the room ready and get in bed. Crips have to make sure they have their chair in the right place and their pillows supporting them correctly. This process takes time; the lover who is not preparing the environment must patiently wait.
3. Crips are not Going to Break
In everyday life, Crips are touched gently and handled with careful precision. However, in the bedroom, that clinical touch can be replaced by firm physical contact. By giving Crips physical weight, they become anchored in the here and now, affirming they have a human body.
4. Pleasure is a Two-Way Street
One reason why people shy away from having sex with a Crip is that they are not sure that there will be pleasure equity. In reality, Crips can pleasure a partner as well – if not better – than a Temporarily Able-Bodied (TAB) person. Do not assume that just because someone lives with a disability, they are not able to please you physically.
5. Some Crips with Involuntary Movement Have an Advantage in Bed
The TAB sexual cycle is a linear process. However, the Crip sexual cycle is not nearly as predictable. This makes intimate relationships with people living with disabilities to be both exciting and rewarding.
Having an intimate relationship with a person with disabilities is an adventure in exploration, patience, and pleasure. Take the time to think differently!
Galen Spiegler holds a BA in Psychology from Wright State University. He is an author, ordained Marriage Officiant for Weddings on Rainbow Wheels and the Universal Life Church. He is the Founder and Director of Loungeability, and an intern at Thrive Tribe 419.
Five Things You Should Know Before You Take a Crip to Bed
By Galen Spiegler
This article contains sensitive material which may not be appropriate for all readers.
The sexuality of people who live with disabilities is exceptionally nuanced. In fact, there are entire books on the societal forces that push and pull on Crip sexuality. I am going to give you five pieces of advice to keep in mind when having an intimate relationship with a person living with a physical disability.
1. Create Time to Prepare
In today’s sex culture, there is an idea, perpetrated by the media, that a person sees a sexy individual, grabs them, runs to a private place, and immediately has intercourse. This storyline is untrue for everyone, but especially for Crips. When a Crip wants to be sexually active, there is preparation that must happen in order for them to feel attractive and ready for intimacy. Often this preparation looks like a couple of minutes with a caregiver to clean up and prep in order to feel good in their body.
2. Great Crip Intimacy Makes its Own Schedule
After an aid leaves, the Crip and the lover have to get the room ready and get in bed. Crips have to make sure they have their chair in the right place and their pillows supporting them correctly. This process takes time; the lover who is not preparing the environment must patiently wait.
3. Crips are not Going to Break
In everyday life, Crips are touched gently and handled with careful precision. However, in the bedroom, that clinical touch can be replaced by firm physical contact. By giving Crips physical weight, they become anchored in the here and now, affirming they have a human body.
4. Pleasure is a Two-Way Street
One reason why people shy away from having sex with a Crip is that they are not sure that there will be pleasure equity. In reality, Crips can pleasure a partner as well – if not better – than a Temporarily Able-Bodied (TAB) person. Do not assume that just because someone lives with a disability, they are not able to please you physically.
5. Some Crips with Involuntary Movement Have an Advantage in Bed
The TAB sexual cycle is a linear process. However, the Crip sexual cycle is not nearly as predictable. This makes intimate relationships with people living with disabilities to be both exciting and rewarding.
Having an intimate relationship with a person with disabilities is an adventure in exploration, patience, and pleasure. Take the time to think differently!
Galen Spiegler holds a BA in Psychology from Wright State University. He is an author, ordained Marriage Officiant for Weddings on Rainbow Wheels and the Universal Life Church. He is the Founder and Director of Loungeability, and an intern at Thrive Tribe 419.
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
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[title] => Brain Injury and Sexuality
[subtitle] => By Beth A. Fisher, OTR/L
[content] =>
This article contains sensitive material which may not be appropriate for all readers.
“Normal sex isn’t a thing, so you don’t need to know what normal sex is.” —Kathryn Ellis, OTR/L and Certified Sexuality Counselor
People with brain injury (along with other people with disabilities) are still sexual beings with sexual needs and desires. However, people with brain injuries may have difficulty in meeting their sexual and relational needs for a variety of physical, cognitive, and social reasons. Understanding the root of some of those problems is important in order to find solutions and to ultimately experience sexual fulfillment.
It is often said that the brain is the most important sexual organ. So then, it should come as no surprise that any injury to the brain will likely affect one’s sexual functioning in some way. How a person is affected sexually after brain injury varies. Increased desire may also be coupled with impulsivity and may manifest as inappropriate remarks or repeated attempts to establish sexual relationships with unreciprocal partners. Decreased desire may be a result of the fatigue that often accompanies brain injury while the brain tries to repair damaged neural networks.
Additionally, physical changes such as hemiparesis (the inability to move parts of the body on one side), increased muscle tone, and impaired sensation can make intimacy uncomfortable, painful, difficult, or potentially dangerous. Communication and mobility challenges that often occur because of brain injury can impede social relationships, limiting a person’s access to others they would consider as sexual partners. Hormonal changes (in
addition to those caused directly by brain injury) are often a result of medications taken to combat the causes or secondary effects of brain injury such as high blood pressure or depression.
So, with all these negative sexual side effects as a result of brain injury, is there hope? Yes, there is! However, because the topic of sex is often taboo or not discussed, people may avoid talking about their experience with their sexual partners, their therapists, or their doctors. Partners can learn to let pleasure be the goal of sexual expression. Therapists can assist with scheduling a time for intimacy when the person is less fatigued. Doctors can adjust medications to reduce or eliminate some of the sexual side effects. Normal sex, though not a “real” thing, may be defined as the way a person had sex before brain injury, or how they perceive others to experience sexual pleasure. People with brain injury should know that sexual pleasure is different for everyone. In addition to the help people can receive from their counselors, therapists, and doctors, online forums such as the British site Enhance the UK
(www.enhancetheuk.org) can provide information as well as the social support that a person with a brain injury may need to begin their journey to sexual satisfaction.
Beth A. Fisher, MS, OTR/L, CAPS, Fit to Garden Program Developer info@FitToGardenProgram.com www.FitToGardenProgram.com
This article contains sensitive material which may not be appropriate for all readers.
“Normal sex isn’t a thing, so you don’t need to know what normal sex is.” —Kathryn Ellis, OTR/L and Certified Sexuality Counselor
People with brain injury (along with other people with disabilities) are still sexual beings with sexual needs and desires. However, people with brain injuries may have difficulty in meeting their sexual and relational needs for a variety of physical, cognitive, and social reasons. Understanding the root of some of those problems is important in order to find solutions and to ultimately experience sexual fulfillment.
It is often said that the brain is the most important sexual organ. So then, it should come as no surprise that any injury to the brain will likely affect one’s sexual functioning in some way. How a person is affected sexually after brain injury varies. Increased desire may also be coupled with impulsivity and may manifest as inappropriate remarks or repeated attempts to establish sexual relationships with unreciprocal partners. Decreased desire may be a result of the fatigue that often accompanies brain injury while the brain tries to repair damaged neural networks.
Additionally, physical changes such as hemiparesis (the inability to move parts of the body on one side), increased muscle tone, and impaired sensation can make intimacy uncomfortable, painful, difficult, or potentially dangerous. Communication and mobility challenges that often occur because of brain injury can impede social relationships, limiting a person’s access to others they would consider as sexual partners. Hormonal changes (in
addition to those caused directly by brain injury) are often a result of medications taken to combat the causes or secondary effects of brain injury such as high blood pressure or depression.
So, with all these negative sexual side effects as a result of brain injury, is there hope? Yes, there is! However, because the topic of sex is often taboo or not discussed, people may avoid talking about their experience with their sexual partners, their therapists, or their doctors. Partners can learn to let pleasure be the goal of sexual expression. Therapists can assist with scheduling a time for intimacy when the person is less fatigued. Doctors can adjust medications to reduce or eliminate some of the sexual side effects. Normal sex, though not a “real” thing, may be defined as the way a person had sex before brain injury, or how they perceive others to experience sexual pleasure. People with brain injury should know that sexual pleasure is different for everyone. In addition to the help people can receive from their counselors, therapists, and doctors, online forums such as the British site Enhance the UK
(www.enhancetheuk.org) can provide information as well as the social support that a person with a brain injury may need to begin their journey to sexual satisfaction.
Beth A. Fisher, MS, OTR/L, CAPS, Fit to Garden Program Developer
info@FitToGardenProgram.com
www.FitToGardenProgram.com
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
For Tammy Mills, it started with a public service announcement on domestic violence – and a Sheryll Woods novel with a sad backstory. It was all the impetus she needed to get the right information to the right people. As a member of the NH Council on Developmental Disabilities, Self-Advocacy Leadership Team, and People First of NH, Tammy was in a position to make a difference.
Tammy helped plan a training session on domestic and sexual violence for people with disabilities at the January 2020 People First of NH meeting. Twenty five participants – almost all of whom had firsthand or secondary experience with violence – participated.
Domestic and sexual violence has been taboo for way too long. Even now, there is a significant lack of data in New Hampshire on people with disabilities who have experienced abuse. It is imperative that the disability community is trained and knowledgeable about this very important issue. Collaboration between the disability community and the New Hampshire Coalition Against Domestic and Sexual Violence (the Coalition), along with the people served by its 13 crisis centers, is essential for the success of both communities.
“It is so important that we have discussions, role play, and feel open to asking questions about domestic violence,” Tammy shares. “I’d like to open this training up to the general public – that’s how important this topic has become.”
Indeed, there was much to be learned. “While we conducted the training, a number of advocates with disabilities disclosed that they’d either experienced or witnessed violence in an intimate relationship in the past,” shares Linda Douglas, Trauma Informed Services Specialist with the Coalition. “We need to make sure that advocates have information on what to do, and where to go for help.”
The training session included helpful resources such as the Power & Control wheel created by Domestic Abuse Intervention Programs, Duluth, MN which highlights the undercurrents, as well as the obvious signs, of domestic violence. The Duluth Model’s Equality wheel provides the opportunity to discuss positive, healthy elements of a strong, supportive, and equitable relationship.
As a result of topics that arose during this training, Marie Linebaugh, Program Director for the Coalition, will be presenting on Power and Control Dynamics with Caregivers at the Learn It! Live It! Love It! conference hosted by Advocate NH in Concord on September 25, 2020. This training will include guidance on navigating close personal relationships between people with disabilities and caregivers. Discussions will include identifying elements of healthy – and unhealthy – relationships, as well as what steps to take to get help if someone identifies that they are in a harmful situation.
Thanks to Tammy Mills, the People First training on domestic violence was a great success, and an exceptional opportunity for sincere and honest communication on an extremely difficult topic.
Crisis Help Line
How to Get Help: 1-866-644-3574
There are 13 state-wide member programs that operate 24/7 crisis lines for survivors of sexual and domestic violence. The phone number listed above will put you through to a crisis center in your area.
IMPORTANT: You do not have to be physically injured to receive support from a crisis center. This line is meant to support people and provide resources. You can call even if you are not the direct victim of violence.
For Tammy Mills, it started with a public service announcement on domestic violence – and a Sheryll Woods novel with a sad backstory. It was all the impetus she needed to get the right information to the right people. As a member of the NH Council on Developmental Disabilities, Self-Advocacy Leadership Team, and People First of NH, Tammy was in a position to make a difference.
Tammy helped plan a training session on domestic and sexual violence for people with disabilities at the January 2020 People First of NH meeting. Twenty five participants – almost all of whom had firsthand or secondary experience with violence – participated.
Domestic and sexual violence has been taboo for way too long. Even now, there is a significant lack of data in New Hampshire on people with disabilities who have experienced abuse. It is imperative that the disability community is trained and knowledgeable about this very important issue. Collaboration between the disability community and the New Hampshire Coalition Against Domestic and Sexual Violence (the Coalition), along with the people served by its 13 crisis centers, is essential for the success of both communities.
“It is so important that we have discussions, role play, and feel open to asking questions about domestic violence,” Tammy shares. “I’d like to open this training up to the general public – that’s how important this topic has become.”
Indeed, there was much to be learned. “While we conducted the training, a number of advocates with disabilities disclosed that they’d either experienced or witnessed violence in an intimate relationship in the past,” shares Linda Douglas, Trauma Informed Services Specialist with the Coalition. “We need to make sure that advocates have information on what to do, and where to go for help.”
The training session included helpful resources such as the Power & Control wheel created by Domestic Abuse Intervention Programs, Duluth, MN which highlights the undercurrents, as well as the obvious signs, of domestic violence. The Duluth Model’s Equality wheel provides the opportunity to discuss positive, healthy elements of a strong, supportive, and equitable relationship.
As a result of topics that arose during this training, Marie Linebaugh, Program Director for the Coalition, will be presenting on Power and Control Dynamics with Caregivers at the Learn It! Live It! Love It! conference hosted by Advocate NH in Concord on September 25, 2020. This training will include guidance on navigating close personal relationships between people with disabilities and caregivers. Discussions will include identifying elements of healthy – and unhealthy – relationships, as well as what steps to take to get help if someone identifies that they are in a harmful situation.
Thanks to Tammy Mills, the People First training on domestic violence was a great success, and an exceptional opportunity for sincere and honest communication on an extremely difficult topic.
Crisis Help Line
How to Get Help: 1-866-644-3574
There are 13 state-wide member programs that operate 24/7 crisis lines for survivors of sexual and domestic violence. The phone number listed above will put you through to a crisis center in your area.
IMPORTANT: You do not have to be physically injured to receive support from a crisis center. This line is meant to support people and provide resources. You can call even if you are not the direct victim of violence.
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
DRC-NH is dedicated to eliminating barriers for people with disabilities across the state. Contact us to schedule a free consultation on a disability discrimination issue with an experienced attorney.
Know Your Rights: Issue Area Spotlights
Young boys sit at classroom table
Special Education & Parental Consent
Throughout the special education process, there are times when the school district must ask for your consent in writing. If you sign as agreeing, you are giving the school permission to move forward with what they have proposed. If you sign as not agreeing, the school will not be able to start the proposed action. If you do not sign the document at all, the school can move forward as if you provided consent. Learn more at drcnh.org/issue-areas/childrens-issues/education/special-education.
Young woman in wheelchair exits a downtown store
Celebrating 30 Years of the ADA
This July marks thirty years since the passage of the Americans with Disabilities Act (ADA). In our monthly e-newsletter we will highlight a different aspect of this fundamental civil rights legislation including transportation, voting, recreation, education, and much, much more. Signup for our e-newsletter at drcnh.org.
Close-up of hand signing document
How Do I Report an Issue Relating to a Representative Payee or Beneficiary?
Through our Representative Payee program, we help ensure certain social security beneficiaries are protected from financial exploitation and other abuses, and ensure that funds are being used appropriately and in the best interest of the beneficiary.
Report an issue relating to a beneficiary or representative payee at drcnh.org/report-a-rep-payee-issue.
Abuse and Neglect · Access and Accomodation · Children’s Issues and Special Education · Employment · Housing · Medicaid and Healthcare · Mental Health · Traumatic Brain Injury · Voting
DRC-NH is dedicated to eliminating barriers for people with disabilities across the state. Contact us to schedule a free consultation on a disability discrimination issue with an experienced attorney.
Know Your Rights: Issue Area Spotlights
Young boys sit at classroom table
Special Education & Parental Consent
Throughout the special education process, there are times when the school district must ask for your consent in writing. If you sign as agreeing, you are giving the school permission to move forward with what they have proposed. If you sign as not agreeing, the school will not be able to start the proposed action. If you do not sign the document at all, the school can move forward as if you provided consent. Learn more at drcnh.org/issue-areas/childrens-issues/education/special-education.
Young woman in wheelchair exits a downtown store
Celebrating 30 Years of the ADA
This July marks thirty years since the passage of the Americans with Disabilities Act (ADA). In our monthly e-newsletter we will highlight a different aspect of this fundamental civil rights legislation including transportation, voting, recreation, education, and much, much more. Signup for our e-newsletter at drcnh.org.
Close-up of hand signing document
How Do I Report an Issue Relating to a Representative Payee or Beneficiary?
Through our Representative Payee program, we help ensure certain social security beneficiaries are protected from financial exploitation and other abuses, and ensure that funds are being used appropriately and in the best interest of the beneficiary.
Report an issue relating to a beneficiary or representative payee at drcnh.org/report-a-rep-payee-issue.
Abuse and Neglect · Access and Accomodation · Children’s Issues and Special Education · Employment · Housing · Medicaid and Healthcare · Mental Health · Traumatic Brain Injury · Voting
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
The Council is dedicated to dignity, full rights of citizenship, cultural diversity, equal opportunity, and full participation for all NH citizens with developmental disabilities.
Make a Difference and Participate in Developing our Next State Plan
Every five years the Council develops a state plan to establish specific goals and objectives to address needs of people with developmental disabilities.
We need you to tell us what is important!
Filling out this survey will help us identify areas the DD Council can focus on to reduce barriers and create opportunities for people with developmental disabilities living in New Hampshire.
Look for The Hospitality Suite at the Annual Family Support Conference The NHCDD will once again be opening its Hospitality Suite in Room 119 at the beautiful Mt. Washington Hotel.
Whether you want to play a game, watch a movie, or just have a quiet space to relax and recharge, the Hospitality Suite will be open to all Family Support Conference attendees. Snacks and drinks will be available.
Mr. Rich and the Youth Beatz performing at the Family Support Conference as part of the Youth Conference activities.
The Mt. Washington Omni Hotel, site of the annual Family Support Conference.
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Resources From NH Council on Developmental Disabilities
The Council is dedicated to dignity, full rights of citizenship, cultural diversity, equal opportunity, and full participation for all NH citizens with developmental disabilities.Make a Difference and Participate in Developing our Next State Plan
Every five years the Council develops a state plan to establish specific goals and objectives to address needs of people with developmental disabilities.
We need you to tell us what is important!
Filling out this survey will help us identify areas the DD Council can focus on to reduce barriers and create opportunities for people with developmental disabilities living in New Hampshire.
Look for The Hospitality Suite at the Annual Family Support Conference
The NHCDD will once again be opening its Hospitality Suite in Room 119 at the beautiful Mt. Washington Hotel.
Whether you want to play a game, watch a movie, or just have a quiet space to relax and recharge, the Hospitality Suite will be open to all Family Support Conference attendees. Snacks and drinks will be available.
Mr. Rich and the Youth Beatz performing at the
Family Support Conference as part of the Youth Conference activities.The Mt. Washington Omni Hotel, site of the annual Family Support Conference.
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
The IOD promotes full access, equal opportunities, and participation for all persons by strengthening communities and advancing policy and systems change, promising practices, education, and research. Learn more about the IOD, our mission, and work at iod.unh.edu.
To mitigate the potential impact on the health and wellness of our community, many IOD events are being canceled, postponed, or held online. Please regularly check our events calendar for event-specific updates at iod.unh.edu/events.
On the first Friday of every month, corresponding with the Bureau of Labor Statistics jobs report, the Employment Policy and Measurement Rehabilitation and Research Training Center offers a live webinar to share the latest data from the field of Disability Employment.
New England Regional Genetics Network Annual Meeting April 16-17, 2020 | 9:00 am – 4:00 pm EST | Online negenetics.org
This April, the New England Regional Genetics Network (NERGN) will host their Annual Meeting to share updates on research and projects taking place around the region and connect people to genetic services and opportunities for innovation.
The NH Leadership Series has begun recruiting for the class of 2021. We want to be sure our class represents NH in all of its cultural, gender, ethnic, and geographic diversity. If you know someone who could benefit from this experience, please nominate them today. iod.unh.edu/projects/nh-leadership/nominate
New Hampshire Leadership Annual Gala: To reduce the possible transmission of COVID-19, we have made the difficult decision to postpone our annual gala. To stay informed of future developments, please contact us at contact@nhleadership.org.
2020 Assistive Technology Makers Fair October 24, 2020 | 8:00am – 4:30pm EST | Durham, NH
$199 to attend iod.unh.edu/atmakers
AT Makers Fair is designed to inspire participants to become creative problem solvers by bringing together makers of all abilities to share ideas, develop new skills, and enhance innovations for persons with disabilities. Novice to veteran makers of all ages and abilities are encouraged to register for this event.
The IOD promotes full access, equal opportunities, and participation for all persons by strengthening communities and advancing policy and systems change, promising practices, education, and research. Learn more about the IOD, our mission, and work at iod.unh.edu.
To mitigate the potential impact on the health and wellness of our community, many IOD events are being canceled, postponed, or held online. Please regularly check our events calendar for event-specific updates at iod.unh.edu/events.
On the first Friday of every month, corresponding with the Bureau of Labor Statistics jobs report, the Employment Policy and Measurement Rehabilitation and Research Training Center offers a live webinar to share the latest data from the field of Disability Employment.
New England Regional Genetics Network Annual MeetingApril 16-17, 2020 | 9:00 am – 4:00 pm EST | Online
negenetics.org
This April, the New England Regional Genetics Network (NERGN) will host their Annual Meeting to share updates on research and projects taking place around the region and connect people to genetic services and opportunities for innovation.
The NH Leadership Series has begun recruiting for the class of 2021. We want to be sure our class represents NH in all of its cultural, gender, ethnic, and geographic diversity. If you know someone who could benefit from this experience, please nominate them today. iod.unh.edu/projects/nh-leadership/nominate
New Hampshire Leadership Annual Gala: To reduce the possible transmission of COVID-19, we have made the difficult decision to postpone our annual gala. To stay informed of future developments, please contact us at contact@nhleadership.org.
2020 Assistive Technology Makers Fair
October 24, 2020 | 8:00am – 4:30pm EST | Durham, NH
$199 to attend
iod.unh.edu/atmakers
AT Makers Fair is designed to inspire participants to become creative problem solvers by bringing together makers of all abilities to share ideas, develop new skills, and enhance innovations for persons with disabilities. Novice to veteran makers of all ages and abilities are encouraged to register for this event.
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
[post_title] => Resources From Institute on Disability at UNH
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[title] => Dating with Disabilities: It Just Takes Finding The Right Person
[subtitle] => By Austyn Blais
[content] =>
Two of my earliest memories are running around the house in princess costumes, and stomping in the mud, despite my mother’s
disapproval. I grew up with a heavy dose of DisneyTM magic and 80’s Brat Pack sarcasm. I also grew up living with Spina Bifida and Hydrocephalus. I could recite my medical history by the time I hit middle school, and had a knack for forgetting about my scars until I saw them in the mirror. My family made it very clear to me from the beginning that my hopes and dreams didn’t have to be any different than any other kid my age. As I got older, some of that wasn’t totally accurate. This became abundantly clear when my friends started having crushes and dating.
Fun fact: When boys in your grade call you not-great names and make it known they do not like you as a person, they are equally as unlikely to like you as a prospective girlfriend. Who knew?! Dating as a teenager is tough. Dating as a teenager with a disability is the worst. I used to think the world was playing some weird prank on me. Anyone who did show an interest in me knew nothing about anything. Spina what? Wait…you have a hole in your back? We were off to a great start. I would go with the flow, and focus on school and friends instead of worrying about finding romance.
I was, and still am, willing to answer any questions people have about my disabilities. I respect when people are curious, and advocate for them to think of people in different ways. However, as I navigated dating in college – and later as an adult – I no longer found it necessary to start by explaining myself. We’re all humans. Some of us just have a more extensive medical record than others.
In terms of dating, I’ve had a few hits and misses – some terrible first dates and some even worse second dates. Because of my unique circumstances, I’ve had to navigate awkward conversations when it comes to being intimate, but aren’t those conversations usually awkward at first? There’s a lot of anxiety and preparation that can go into those moments – for safety and hygiene reasons – and there are not a lot of people into that.
As the years pass, I become more confident in what I want and don’t want in a relationship. I care less about the physical shell of a person and more about the personality housed inside it. I like to think it’s because I value when someone feels the same about me. I have a few scars, but my personality is solid. As my third grade teacher wrote on my report card, I am a joy to be around.
Austyn and Mike share a relationship built on trust, respect, and understanding.
And yes, I ended up finding someone. He is one of the strongest and kindest people I know. I told him I liked him, and he told me he liked me back.
He would never, in a million years, dream of thinking anything differently of me, and he takes all of my embarrassing accidents and moments in stride. He makes me believe that maybe my family was right. You can have the same hopes and dreams as those who don’t have disabilities. They just may take a little extra magic.
Austyn Blais is a mental health advocate and proud dog mom who works at SNHU in order to fund her love of travel.
Dating with Disabilities: It Just Takes Finding The Right Person
By Austyn Blais
Two of my earliest memories are running around the house in princess costumes, and stomping in the mud, despite my mother’s
disapproval. I grew up with a heavy dose of DisneyTM magic and 80’s Brat Pack sarcasm. I also grew up living with Spina Bifida and Hydrocephalus. I could recite my medical history by the time I hit middle school, and had a knack for forgetting about my scars until I saw them in the mirror. My family made it very clear to me from the beginning that my hopes and dreams didn’t have to be any different than any other kid my age. As I got older, some of that wasn’t totally accurate. This became abundantly clear when my friends started having crushes and dating.
Fun fact: When boys in your grade call you not-great names and make it known they do not like you as a person, they are equally as unlikely to like you as a prospective girlfriend. Who knew?! Dating as a teenager is tough. Dating as a teenager with a disability is the worst. I used to think the world was playing some weird prank on me. Anyone who did show an interest in me knew nothing about anything. Spina what? Wait…you have a hole in your back? We were off to a great start. I would go with the flow, and focus on school and friends instead of worrying about finding romance.
I was, and still am, willing to answer any questions people have about my disabilities. I respect when people are curious, and advocate for them to think of people in different ways. However, as I navigated dating in college – and later as an adult – I no longer found it necessary to start by explaining myself. We’re all humans. Some of us just have a more extensive medical record than others.
In terms of dating, I’ve had a few hits and misses – some terrible first dates and some even worse second dates. Because of my unique circumstances, I’ve had to navigate awkward conversations when it comes to being intimate, but aren’t those conversations usually awkward at first? There’s a lot of anxiety and preparation that can go into those moments – for safety and hygiene reasons – and there are not a lot of people into that.
As the years pass, I become more confident in what I want and don’t want in a relationship. I care less about the physical shell of a person and more about the personality housed inside it. I like to think it’s because I value when someone feels the same about me. I have a few scars, but my personality is solid. As my third grade teacher wrote on my report card, I am a joy to be around.
Austyn and Mike share a relationship
built on trust, respect, and understanding.
And yes, I ended up finding someone. He is one of the strongest and kindest people I know. I told him I liked him, and he told me he liked me back.
He would never, in a million years, dream of thinking anything differently of me, and he takes all of my embarrassing accidents and moments in stride. He makes me believe that maybe my family was right. You can have the same hopes and dreams as those who don’t have disabilities. They just may take a little extra magic.
Austyn Blais is a mental health advocate and proud dog mom who works at SNHU in order to fund her love of travel.
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
[post_title] => Dating with Disabilities: It Just Takes Finding The Right Person
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[title] => Healing Through Relationships
[subtitle] => By Karyn Harvey, Ph.D.
[content] =>
The good life is built with good relationships—Robert Waldinger
Life is hard. This is something we all know. Some of the things we go through can deeply affect us. An important question becomes, “How can we heal?” Different people heal in different ways, but there are a few factors that are the same for all of us. An important study conducted by Harvard University examined what made people happy over the course of their lives. Over 700 men were followed for almost 80 years, with one factor standing out above all others. Was it money, power, talent, skill? None of these – it was relationships.
People who had healthy, solid friendships and marriages were able to recover more easily from difficulties they’d faced earlier in life to become genuinely happy in their later years. Those who were isolated and had very few friends actually experienced more physical pain as they got older, lost their memories faster, and reported being less happy. Money, status, education, and talent had nothing to do with their happiness.
Christa is a woman who has been through difficult times. Both her parents died when she was young. She lived in an agency with four other people for a period of time, and then transitioned to living with just one other person. She was very lonely. Christa tried to make friends at work, but people were busy with their own lives and let her know as much. She started calling her Direct Support Professionals over and over again on her cell phone. Then, she’d call staff at the agency office repeatedly. People told her to stop calling so much. At her annual meeting, they talked about how she made too many calls, and even suggested addressing her calls with a behavior plan.
A singles event was the catalyst that changed the lives of Christa and Derrick.
Then Christa met Derrick. It was a “get to know you” singles event. When Derrick and Christa sat down together, they both started talking and didn’t stop for the rest of the night. Eight years later, they’re still talking. Christa tells everyone she’s found the love of her life.
When Christa’s aunt died, everyone was worried. She was very close to her aunt, and she’d lost her parents so young. Would she be shattered by one more loss? She turned to Derrick and found the support she needed to gain strength in a way that no one expected.
Christa was able to find love and heal on many levels through having her own relationship. She’d watched day in and day out both the real and pretend relationships of others, but never had her own. Relationships are a human right. In some situations, people have to fight for that right and, in others, they happen naturally. Whatever way the healing happens – through friendships or relationships – no one deserves to live a life without them.
Karyn Harvey, Ph.D. is the Director of Training
and Development at The Park Avenue Group in Baltimore, MD.
The good life is built with good relationships—Robert Waldinger
Life is hard. This is something we all know. Some of the things we go through can deeply affect us. An important question becomes, “How can we heal?” Different people heal in different ways, but there are a few factors that are the same for all of us. An important study conducted by Harvard University examined what made people happy over the course of their lives. Over 700 men were followed for almost 80 years, with one factor standing out above all others. Was it money, power, talent, skill? None of these – it was relationships.
People who had healthy, solid friendships and marriages were able to recover more easily from difficulties they’d faced earlier in life to become genuinely happy in their later years. Those who were isolated and had very few friends actually experienced more physical pain as they got older, lost their memories faster, and reported being less happy. Money, status, education, and talent had nothing to do with their happiness.
Christa is a woman who has been through difficult times. Both her parents died when she was young. She lived in an agency with four other people for a period of time, and then transitioned to living with just one other person. She was very lonely. Christa tried to make friends at work, but people were busy with their own lives and let her know as much. She started calling her Direct Support Professionals over and over again on her cell phone. Then, she’d call staff at the agency office repeatedly. People told her to stop calling so much. At her annual meeting, they talked about how she made too many calls, and even suggested addressing her calls with a behavior plan.
[caption id="attachment_2191" align="alignleft" width="500"] A singles event was the catalyst that changed the lives of Christa and Derrick.[/caption]
Then Christa met Derrick. It was a “get to know you” singles event. When Derrick and Christa sat down together, they both started talking and didn’t stop for the rest of the night. Eight years later, they’re still talking. Christa tells everyone she’s found the love of her life.
When Christa’s aunt died, everyone was worried. She was very close to her aunt, and she’d lost her parents so young. Would she be shattered by one more loss? She turned to Derrick and found the support she needed to gain strength in a way that no one expected.
Christa was able to find love and heal on many levels through having her own relationship. She’d watched day in and day out both the real and pretend relationships of others, but never had her own. Relationships are a human right. In some situations, people have to fight for that right and, in others, they happen naturally. Whatever way the healing happens – through friendships or relationships – no one deserves to live a life without them.
Karyn Harvey, Ph.D. is the Director of Training
and Development at The Park Avenue Group in Baltimore, MD.
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.
This publication was supported solely by federal funding from grants from the U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration; U.S. Department of Health and Human Services, Administration for Community Living/Administration on Intellectual and Developmental Disabilities; U.S. Department of Education, Department of Rehabilitation Services; Social Security Administration; and a grant from the New Hampshire Bar Foundation.
The contents are solely the responsibility of the grantees and do not necessarily represent the official views of the grantors.
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[title] => Big Dreams for Little Ones - Birth to Three
[subtitle] => Fall 2019 Issue
[content] =>
From the moment of diagnosis, parents of children with disabilities enter a new world of services and supports. In the Fall 2019 issue of the RAP Sheet, we explore the experience of disability for these young children and their families, from diagnosis to age 3, a critical period for learning, growing, and opportunity that will impact long-term health and ability.
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[title] => Right From the Start
[subtitle] => By Carrie Duran, Policy Chair of the NH Council on Developmental Disabilities
[content] =>
I wasn’t prepared for the phone call. I was folding laundry in the living room while my twin four-year-old daughters were playing. It was early evening in South Pasadena, California, just before five o’clock. When I said “hello”, the women on the other end introduced herself as being from the lab and she had the results from my amniocentesis.
Katie takes a turn surfing
Two weeks prior, I had a very scary and painful procedure done to determine if my child had Down syndrome. I was 39 years old and prior bloodwork showed my baby could have Down syndrome. If I had it to do over, I would not have had the procedure. I already knew it made absolutely no difference to me; but I wanted to give peace to those around me, so I went along.
I had not met the women on the phone. In a single sentence she told me that my otherwise healthy baby girl had Down syndrome. In the next sentence, she realized her mistake in telling me my baby was a girl – we had not asked for that information. Her third sentence was the most troubling: she told me I had one week to decide if I would terminate my pregnancy and then she said she was sorry. The conversation ended and she hung up. I cried for the next two weeks.
During those two weeks I was sad, overwhelmed, scared, and had a lot of questions. I didn’t know what to expect or where to turn for answers. The obstetrician who performed the amnio was of not helpful. Upon hearing my decision not to terminate my pregnancy, he told me I was selfish and should think about the burden I was putting on my other children.
Fortunately, one of my daughter’s pre-school teachers had a new grandson with Down syndrome and put me in touch with an organization called Club 21. Club 21 is an organization in Pasadena, California, founded by parents who have children with the extra 21st chromosome, otherwise known as Down syndrome. I reached out and began attending their Mommy and Me classes called First Steps. My young daughters joined me as we sat on the floor and played with babies and toddlers with Down syndrome and talked to parents. My girls were nervous too and I wanted to put them at ease. They were able to make friends with other siblings and share their worries. At Club 21 we met families who had children of all ages with Down syndrome. Along with the First Steps class we attended weekend workshops specialized for various age groups about what to expect along this journey. Club 21 enabled me to dispel the myths of Down syndrome and expect a bright future for my child. I was reassured that anything is possible for my child. I later found out I was the first pregnant parent to attend First Steps and the workshops. I am happy to say this is no longer the case.
Adaptive bike riding and skiing have allowed Katie the opportunity to grow and enjoy experiences.
Katarina Amalia Duran was born on March 22, 2011. Our little girl, Katie, became the center of our family in more ways than one. She had our hearts from the first moment we saw her, with her full head of black thick hair. Katie made us smile with every interaction. My smiles were always coupled with a twinge of fear and worry. Would she ever walk or talk or reach those milestones reached by my other children? What kind of future would she have? When Katie was home for a few weeks, I changed my mindset. I began to expect she is going to reach those milestones. Perhaps she would take a bit longer than her peers, but it would happen.
Katie was home for a month when someone from a county agency came to visit and assess her. This person spoke of having realistic goals for Katie. When I told her I fully expect my child to go to college and live on her own one day, she looked surprised. She cautioned me to not set my expectations so high. I cautioned her to not underestimate my child or the will of a parent to give her child everything she needs to succeed.
When Katie was a year old, her father and I separated and divorced. When Katie was two years old, her sisters and I moved from California to my childhood home town in New Hampshire. Here we have found a community which embraced my vision for Katie. The support we have received from family, friends, our school district, our town, and our state has been wonderful. I feel that members of our community see past Katie’s diagnosis and see just an ordinary child. A child surrounded by people who believe in her, who know she can achieve extraordinary things. And through the years Katie has been fully welcomed and included in her community: in preschool, kindergarten, elementary school, and all kinds of clubs, camps, and activities.
Katie Skiing
This summeratie participated in the Kingswood Children’s Summer Theater Program’s production of Beauty and the Beast. She did this without a paraprofessional and without her mother. She did this without self-doubt and without anyone around her questioning if she could do it. During dress rehearsals and performance days I hung out backstage to offer my support. Katie didn’t need it. She did her own makeup right down to the eyeliner and mascara. She was responsible for her own costumes and knowing where to be and when. Whenever I offered her my help, I was met with the profound statement of “I’ve got this Mom”. During her performance, I couldn’t stop crying. I cried because I was proud of her. I cried because of the limitations in her abilities others tried to make me accept. And I cried because I know she is going to be just fine.
The road to “I’ve got this Mom,” has been arduous at times. Numerous doctor appointments, medical tests, therapies, medications, chronic illness, and hospital stays have filled up a lot of her 8 years. In my quest to ensure Katie has every opportunity, my daughters and I have also found opportunity. Katie’s participation in equine therapy, water therapy, adaptive skiing, surfing, adaptive bike riding, speech therapy, occupational therapy, and physical therapy are just a few of the supports Katie has needed to grow. Through Katie’s experience, all my girls have learned to ski, swim, and ride horses. Katie’s sisters have also learned empathy, compassion, patience, advocacy, and love. I have had the opportunity to learn that I have strength, intelligence, and the heart of an advocate.
As Katie enters the third grade, I can look ahead and clearly imagine dropping her off at college and helping her to set up her first dorm room. I know if she has the right supports, opportunities, and the belief of herself and others in her abilities, her life will continue to be extraordinary!
For the life of the RAP Sheet, Susan Covert provided the thread that tied together every word, article, and theme. From coming up with catchy titles and reaching out for content and photos, to expert editing and making sure the articles were accessible and engaging for everyone, Susan ensured that people with disabilities, their families, and the organizations providing support were up-to-date with the information that most mattered to living a life where everyone is welcomed and well supported in their community. We sincerely thank Susan for her efforts, and for challenging members of the IOD, DRC-NH, and DDC to create a publication of which we can all be proud. While Susan may be retiring from this role, we know she will continue her work making the world a better place for all people.
With sincere gratitude from all of us on the RAP Sheet team,
Stephanie, Isadora, Déodonné, Mary
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[title] => Disability Diagnosis Dialogues: Shifting the Narrative
[subtitle] => By Susan Zimmermann, PhD, ABLE NH Disability Diagnosis Dialogue Task Force Chair
[content] =>
“Your son has a 99 percent chance of having Down syndrome…” The doctor laid out our options, concluding with, “don’t worry, you don’t have to be a hero. If you don’t terminate, you can have the baby here, and we can keep him comfortable, but we don’t have to do anything drastic to save his life. In plain speak, we could choose to let him die.”
This quotation is from an essay I read on social media about a year ago. While the focus of the essay had a positive upswing – the young mother, Jillian, was passionately promoting social inclusion in her son’s elementary school – I couldn’t move beyond her first paragraph where she described the delivery of her son’s diagnosis of Down Syndrome. It reminded me of the 1982 case in Bloomington, Indiana in which parents of a baby with Down Syndrome had declined life-saving surgery on their newborn because the family physician convinced them that the infant would have a very poor quality of life. The baby was wheeled to a separate part of the nursery where he was not fed and essentially starved to death. This and a number of other cases involving the deaths of newborns with disabilities where standard medical treatment was withheld, led to the 1984 enactment of the Baby Doe Law which extended the laws defining child abuse to include the withholding of fluids, food, and medically indicated treatment from children with disabilities.
Susan’s son Oliver participating in Concord High School’s Marching Band
What Jillian’s physician offered her in terms of pre-natal “options” seems extreme in this day and age. However, the general assumptions surrounding this discourse are pervasive – that life with a disability is a life not worth living and is full of hardship and suffering. Families beginning their journey in life with a disability continue to report experiencing the delivery of diagnosis in negative terms and life outcomes. For example, after my friend Anna’s 11 month-old daughter, Jenny, was diagnosed with Angelman’s Syndrome she recalls:
“I remember distinctly when they told me about her diagnosis and they were telling me all the science behind it…Their view of people with Angelman’s Syndrome was very bleak…The information out there was absolutely horrific. It portrayed people having Angelman’s Syndrome as not being able to be participants in their own lives, in schools, in communities. It never showed anything positive about it… I remember sitting there crying because I thought, “there has to be more that I can do for my daughter than this. This is not going to be her life.”
Despite what Anna was initially told about her daughter’s future, Jenny is living a very full and active life: she attends the public middle school where she is completely included in the general educational classroom, she has many friends and participates in several extra-curricular activities (including cheerleading!), and has become a pro at using assistive technology in order to communicate.After my own son, Oliver, was prenatally diagnosed with Down Syndrome, my genetics counselor immediately offered me and my husband an invitation to speak with a father of an adult child with the same diagnosis. The father also happened to be a developmental pediatrician and so had many layers of knowledge about Down Syndrome on both professional and personal levels. After two hours of drilling him with questions about his daughter and their family life, my narrative shifted – I had come into the meeting with fear and uncertainty about my unborn child’s future and quality of life, I walked away from the meeting with a newfound hope and excitement about the endless possibilities for my son. After hearing countless negative experiences from parents, I now realize how incredibly fortunate I was to have met with this father.ABLE NH’s Disability Diagnosis Dialogues Task Force aims to collaborate with medical teams to present a more balanced and accurate narrative about life with a disability. We believe that by developing mutually beneficial partnerships, healthcare professionals and disability rights advocates can work together to effectively transform NH’s healthcare system into one which embraces the vision that with the right supports, people who experience disabilities can and do lead fulfilling and meaningful lives.
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[title] => Know Your Rights: Early Intervention
[subtitle] => By Karen Rosenberg, Senior Staff Attorney at Disability Rights Center - NH
[content] =>
Family-Centered Early Supports and Services (FCESS), or early intervention,provides comprehensive evaluations and services for infants and young children (birth to three years old) with developmental disabilities, including autism, and for infants and children with certain conditions that are likely to result in a developmental delay or who are at risk of a substantial developmental delay. Available services include developmental evaluations, speech therapy, occupational therapy, physical therapy, special instruction, service coordination, parent teaching and assistance with a child’s transition to pre-school services. Early intervention services are provided in natural settings, most often the child’s home or child care setting.
New Hampshire’s local area agencies or local area agencies are responsible for administering New Hampshire’s early intervention services. Anyone who has a concern about a child’s development can make a referral to early intervention including, and most-importantly, the parent. If you have questions or concerns about your child’s progress in meeting developmental milestones such as crawling, making eye contact or talking, you may want to speak with your child’s pediatrician or contact your local area agency to refer your child for early intervention.
After you (or another person, such as the child’s pediatrician) contact the area agency to make a referral, the area agency has 45 days to complete an evaluation (with your permission), determine eligibility and, if your child is eligible, develop an Individualized Family Support Plan (IFSP). During this time, the area agency’s Intake Coordinator will hold a meeting with a team of professionals to determine what assessments and evaluations need to be conducted to identify your child’s developmental needs in the following areas: cognitive development, physical development (including hearing and vision), communication, social and emotional development and adaptive development. The parent is a critical member of the child’s early intervention team and should be actively involved in the evaluation process and, if the child is eligible, in developing the child’s IFSP.
The IFSP outlines the child’s goals and strategies for attaining those goals. It should reflect the family’s and child’s strengths, needs and priorities. Early Supports and Services are available at no cost to families. However, if authorized by the parent, private and/or public insurance may be used to cover the cost of medical services provided through early intervention.
If you have questions or concerns about your child’s referral for FCESS/early intervention, evaluation, IFSP or related services, feel free to contact Disability Rights Center – NH and set up a time to speak with one of their intake attorneys free of charge.
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[title] => Maneuvering Through the Maze
[subtitle] => By Terry Ohlson-Martin, Co-Director, NH Family Voices
[content] =>
NH Family Voices has released a newly updated Maneuvering Through the Maze, A Family resource Guide for families having children with Special Health Care Needs/Disabilities. It is also now available in Spanish.
The guidebook is formatted to take the user from birth to adolescents transitioning into adulthood. Listings include state health and human services agencies, educational resources, private associations and organizations that serve people with physical, developmental, mental health, and chronic health conditions and their families. Also listed are organizations and services that can be accessed by all state residents (housing, childcare, etc.). If you view the document online, hyperlinks are used for easy access.
If you prefer a hard copy of the resource guide call (603) 271-4525 or Email to nhfamilyvoices@nhfv.org. The resource guide is free to families but to offset printing and postage, we ask that you consider a donation of $15.
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[title] => New to Newborn Screening
[subtitle] => By Déodonné Dustin Bhattarai, Communications Specialist, Disability Rights Center – NH with support from Cristle Gordon, School Counselor, Pembroke Elementary
[content] =>
I didn’t give newborn screening a second thought. It seemed rather cruel to prick my newborn’s perfect little baby toe hours after his birth, but it wasn’t something that really registered given everything else that was going on.
Cristle Gordon and Deodonne Bhattarai with Advisory Committee member and fellow SMA parent, Bill Morin, after testifying.
I didn’t worry about the results. My pregnancy was routine and my baby was healthy. When all the results came back negative, I shrugged the screening off as a non-event in what would clearly be the long and healthy life of my firstborn child.
Now I know better.
Eight months later, our son began to miss key gross motor milestones like rolling over and crawling. For four months, we met with medical experts throughout the state. Our infant son had so many tests and evaluations, we lost count. He slowly began to lose strength in his neck and core and sitting up for extended periods of time was a challenge. We felt helpless; no one knew what was causing the muscle loss.
It was devastating. Confusion, terror, isolation, and despair took hold of our family for months.
Finally, we were referred to a neuromuscular specialist in Boston who diagnosed our son within a matter of minutes. A simple blood test confirmed the diagnosis: Spinal Muscular Atrophy (SMA-Type II). It was one month after his first birthday.
SMA is the leading genetic cause of death for children under age two and one in 50 Americans is a genetic carrier for SMA. Spinal Muscular Atrophy is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away a child’s ability to walk, crawl, eat, and breathe.
On December 23, 2016, the FDA approved the first-ever treatment for SMA and in May 2019, it approved a second treatment. Unfortunately, the drugs’ effectiveness is closely linked to early treatment. Infants who receive treatment before the onset of symptoms achieve unprecedented gross motor milestones including sitting, standing, and walking – some remain virtually asymptomatic.
Unfortunately, our son, like all newborns in New Hampshire, was not tested for SMA at birth. His diagnosis and treatment were subsequently and unnecessarily delayed until months after symptom onset.
Depending on the type of SMA, diagnosis may not occur until a child’s first or second year, well after SMA has started to rob them of abilities. Although treatment at any age is critical in stopping the degenerative progression of SMA, it is likely less effective than treatment as a newborn. So, in May 2018, I joined forces with another SMA mom to testify in front of the New Hampshire Newborn Screening Advisory Committee. We described how, despite SMA, our children are spunky, smart, funny, and loving. But because of SMA, they use wheelchairs to explore their environments and they will most likely predecease us, their parents, their siblings, and their friends, by decades.
We asked that SMA be added to the state’s Newborn Screening Panel. We made the case that SMA qualifies under state law and that no other family should be put through what ours were, given the ease of diagnosis and availability of effective treatment. Even though it was too late for our babies to benefit, we asked the Committee to act quickly, but there were not enough Committee members present to vote. In October, we testified again. During that meeting, the Committee voted unanimously to recommend that SMA be added to New Hampshire’s Newborn Screening Panel. Shortly after, the Committee’s recommendation was approved by DHHS Commissioner Meyers. We were so excited.
Our excitement was short-lived. Nearly a year has gone by and newborns born in the Granite State are still not being screened for SMA. As part of the implementation process, the contract between the State of NH and the Massachusetts-based lab which conducts NH’s newborn screenings had to be amended. Once amended, the contract will have to be presented to Governor Sununu and the Executive Council for approval. Via email, Patricia Tilley, Deputy Director of the New Hampshire Division of Public Health Services at DHHS stated that the amended contract was “currently anticipated to be presented for approval by [Governor and Council] on August 28,2019…. If all goes as planned … SMA screening will be initiated the beginning of September 2019.”
Unfortunately, August came and went and no vote was taken. Babies are born every day. None are screened for SMA. We continue to wait.
In a follow-up email, Courtney Keane, the Newborn Screening Program Manager at DHHS stated that they “expect that [SMA] will be on the [October 2nd Governor & Council] agenda.” If this happens, it will have taken almost exactly a year to implement one new screening to our existing panel of thirty-four conditions. Although this seems excessive, we choose to focus on the positive; a future when babies in New Hampshire will finally receive timely diagnosis and life saving treatment for SMA.
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[title] => What is Newborn Screening?
[subtitle] => By Déodonné Bhattarai, Communications Specialist, Disability Rights Center - NH
[content] =>
Within 24-72 hours of birth, your baby likely had their toe pricked and a blood sample taken to screen them for thirty-four different genetic conditions where early diagnosis is critical. This screen is performed at no cost to the young patient or its parents.
In New Hampshire, our newborn screening program is housed in the Maternal & Child Health Section of the Department of Health and Human Services. The program is informed by the recommendations of the Newborn Screening Advisory Committee. The Committee is made up of medical providers, researchers, genetic counselors, industry administrators, and a parent of a child with a genetic condition to provide the family perspective.
When considering whether to add a condition to the panel, Committee members consider four key factors: how common the condition is (incidence), its severity (morbidity and mortality), whether screening is possible, and the availability of effective treatment.
If a screening indicates that your baby may have a genetic condition, you will be contacted and diagnostic testing will be conducted to confirm or rule out the genetic condition. Although the Newborn Screening Program has information and resources, your child’s physician will be an important resource for you during this time and during any treatment or additional follow-up.
New Hampshire’s Newborn Screening Program provides critical information to families, leading to early diagnosis and treatment of dozens of conditions, and changing health outcomes and the quality of life for our children. For more information on New Hampshire’s Newborn Screening Program visit: https://www.dhhs.nh.gov/dphs/bchs/mch/newborn.htm
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[title] => Is Assistive Technology for Infants?
[subtitle] => By Jennifer Stylianos M.S., OTR/L, ATP, Gray Consulting & Therapy, LLC
[content] =>
What is Assistive Technology (AT) anyway? AT is defined as any item that helps a person with a disability increase, maintain, or improve function. This means that technology makes tasks and activities which are difficult or impossible, possible. For example, gluing small drawer knobs on to a wooden puzzle can make it possible for a child who struggles to pick up flat puzzle pieces to play with it. Possibility is powerful, but the real power of Assistive Technology is access. Access to play, access to communication, access to movement, and access to independence.
All AT evaluations are unique.
Assistive Technology devices can be complicated and expensive, a tablet that allows a child to communicate with a glance of his eyes or a power wheelchair that allows her to race across the playground with the press of a button, but it doesn’t have to be. Most AT for infants and toddlers would not even be considered technology, things like pointing to photographs of farm animals to sing Old MacDonald, or spoons with bent handles for eating pudding are AT.
Assistive Technology is not just things. It is also a service which helps the child and his family in the selection, acquisition, or use of appropriate technology. These services include evaluation and training in how to use the technology. Most people who provide AT services are knowledgeable in a particular area of AT such as Augmentative and Alternative Communication (AAC) or seating and mobility.
AT for summer fun.
Common myths that prevent appropriate AT services include:
Myth: The use of an AT device can act as a deterrent to a child’s ability to develop typical skills.
Fact: Research shows the opposite to be true.
Myth: Infants and toddlers are either too young to benefit from AT or need certain “readiness skills” before they can use it.
Fact: Very young children can benefit from AT that is properly matched to their needs and abilities with no prerequisite skills.
Myth: AT is a magic bullet.
Fact: There are no magic bullets. AT, like other interventions, is an ongoing process in which the child will progress, learn, change, and grow.
Assistive Technology evaluations are not like other evaluations that the child might participate in. Rather than obtaining standardized measures, the focus of an AT evaluation is exploring potential solutions to meet a specific functional need. In this process, the child’s abilities, environment, and the family’s input are carefully matched with potential solutions. The child may test the equipment or have a short-term equipment trial. Once an appropriate AT solution is identified and obtained, continued evaluations are recommended as the child grows and learns because changes may need to be made to the equipment in order to meet the child’s needs at any given time.
Every evaluation process is unique. I met Johnny when he was two. Any purposeful movement caused his entire body to become painfully tense and sweat to bead up on his skin. It was clear by his quick smile and mischievous look that he had a lot to say. His family, an AAC specialist, physical therapist, and I worked collaboratively to trial a variety of eye-gaze solutions from low-tech plastic frames to high-tech eye-gaze communication devices. Johnny was immediately able to select from an array of four choices. He and his family chose a device to trial during which time Johnny received training and support from the AAC specialist and myself.
Knobs on a puzzle increases a child’s access to toys.
Following his trial period, Johnny was able to put together simple sentences with his eyes from pages with an array of fifteen buttons. When he entered preschool, he was using thirty-six buttons per page. By using the eye-gaze, Johnny was able to say “hi”, label all of his shapes, request his favorite books, and yell at his little brother. Johnny is entering middle school now and is using his latest communication device to read, write, and access the curriculum. He also can say several phrases verbally.
Given the appropriate assistive technology, infants and toddlers experience more access to and control over their environment. This can reduce frustration and improve their self-esteem and cognitive development. While there is a growing awareness of AT, it is underutilized. Nationally, only 3.1% of individual family service plans (IFSP) include the use of assistive technology (http://www.techfortykes.org/files/ATinEarlyInterventionHandout.pdf). Although assistive technology does not replace traditional therapies or prevent/delay a child’s ability to develop typical skills, there is no reason to wait to begin implementing AT services and strategies to expand the world for young children.
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[title] => Partners In Health
[subtitle] => By Janice Boudreau, Partners in Health Family Support Coordinator for Region 4 Waypoint
[content] =>
Partners in Health (PIH) is a statewide community-based program that provides support to families of children (birth to 21) with chronic health conditions, regardless of income.
PIH assists in getting necessary care and services for its clients as well as setting health care goals and collaborating with other community organizations to help achieve those goals. PIH also arranges inclusive community events and trips for its client families. Partners in Health is one of the programs available through Special Medical Services for children and youth with special health care needs and their families.
If your child has a confirmed cognitive delay diagnosis, they are not eligible for PIH but may be eligible for Area Agency services.
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[title] => Leadership Education in Neurodevelopmental and related Disabilities (LEND)
[subtitle] => By Betsy P. Humphreys, PhD, Research Assistant Professor & Interim Director of NH-ME LEND Program
[content] =>
There are 52 LEND programs in the United States and they all have the same goal: To improve the clinical expertise and leadership skills of professionals and family members who are caring for children and youth with neurodevelopmental disabilities. Each year there are about 1,500 trainees in LEND programs across the US. LEND programs are funded through the Autism Collaboration, Accountability, Research, Education and Support Act of 2014 – also known as Autism CARES. LEND programs must provide training that 1) increases awareness of autism spectrum disorder (ASD) and developmental disabilities (DD); 2) increases the number of clinicians who are able to screen, rule out, and/or diagnose ASD/DD, and 3) provide evidence-based interventions for children and youth with a diagnosis of ASD/DD. Early screening, diagnosis, and intervention provides children with the supports they need to develop to their full potential.
The NH-ME LEND program is a two-state collaboration between Dartmouth Hitchcock Medical Center, the Institute on Disability at the University of New Hampshire, and the Center for Community Inclusion and Disability Studies at the University of Maine. There are 24 trainees each year; trainees can be professionals, students, family members, or self-advocates. The program works hard to make sure that training goals are met. For example, trainees complete a course where early screening, diagnosis and intervention is studied alongside the LEND faculty. All trainees visit clinics around New Hampshire and Maine to learn more about diagnosis and intervention for children and youth with ASD/DD. Sometimes trainees travel with NH Family Centered Early Supports and Services staff to visit children and families in their homes. All trainees complete leadership projects with community partners related to early screening, diagnosis and interventions. All trainees learn about systems and policies that support children and youth with ASD/DD. A smaller group of trainees each year complete specialized training on screening and diagnostic tools so they can use the tools in their clinical practices. The NH-ME LEND Program is lucky to have many partners across NH and ME who support trainees in their learning.
For more information about the NH-ME LEND Program please visit our website:
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[title] => An interview with LEND Trainee Julia Pheifer MS OTR L
[subtitle] =>
[content] =>
What inspired you to apply to the LEND program? Did the LEND program influence your decision to work in early intervention? If so, how?
When I was a freshman in high school, my parents decided to become a foster family and we cared and loved for babies one at a time, most of them born addicted to drugs. I was very interested in the occupational therapists that came to our home to provide therapy services. This sparked my interest to apply to the OT program at UNH. I always knew I loved playing and working with children between the ages of 0-3 but LEND definitely influenced my decision to work in early intervention. Through LEND, I was given the opportunity to work with Healthy Families NH and observed home visits from a case manager perspective. I was also able to observe the NICU at Dartmouth-Hitchcock and was provided with valuable resources throughout my LEND year that have helped me in my career now. For example, I learned about resources such as “Zero to Three” and took a continuing education course about the effects of substance abuse on young children. Overall, LEND provided me with a foundation of resources and connections that I will forever be grateful for!
As an early intervention provider, how did your LEND experience influence how you approach your work? How did it influence the ways you work with children and families?
LEND taught me that in order to be successful as an OT, I need to provide support to the entire family, not just the client. I need to encourage and support the parents’ role in their interactions with their child and need to meet each individual parent at the skill level they are at in order to promote successful carryover of suggestions and recommendations given during therapy.
What tips do you have for families who are transitioning their children into inclusive childcare and preschool settings?
Through LEND, I witnessed that the parents with positive relationships with their child’s teachers were those who were not afraid to ask questions and be open to teachers’ recommendations. I would tell parents whose children are transitioning into an inclusive program that this relationship is a partnership. Furthermore, I would share that this transition is a positive milestone in a child’s life, even though it may be scary for the parent. During this time, their child will continue to develop skills, especially social skills, as they interact and learn from their peers.
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[title] => Financial Planning in a World of Go Fund Me
[subtitle] => By John Kitchen
[content] =>
One of the many things to think about following a diagnosis is financial planning. What disability-related expenses will you face? Will you need to take unexpected time off from work? Will you need to make your home accessible or incur medically-related travel expenses? What won’t be covered by health insurance? How will you cover these expenses?
It’s never too soon to think about financial planning for your child and family. For children with disabilities, regular savings accounts, 529 college savings plans, a fundraiser, or a Go Fund Me or other crowd funding site can impact eligibility for needs-based public disability-related benefits.
Public benefits, like Medicaid, may have financial eligibility requirements. This means that raising money in your child’s name could result in them losing their services. However, with some thoughtful planning and the use of ABLE accounts and Special Needs Trusts, unintentional outcomes can be avoided.
What is an ABLE account? It’s like a 529 college savings plan account (and can be used for education) but it also includes other disability related purchases. For more information about ABLE, check out www.stablenh.com, New Hampshire’s ABLE account program.
What is a Special Needs Trust? It’s a trust that is allowed for people with disabilities receiving Medicaid and other public benefits. It can be a savings account and can also make purchases. For more information, check out www.elonh.org, a non-profit pooled trust program in New Hampshire.
So, before you open that savings account, organize a charity event, or launch a Go Fund Me page for your child, make sure you have the proper financial planning tools in place.
The New England Regional Genetics Network, or NERGN, aims to improve the health and social well-being of individuals with genetic conditions and their families. Its primary goal is to connect families from underserved communities (including those from rural areas and immigrants) who are in need of services, with a geneticist or genetic counselor. However, scarce resources and long waiting lists for services can make this process challenging. Fortunately, with funding from the Genetic Services Branch in the Department of Health and Human Services, NERGN works with regional partners and a national network made up of healthcare providers, public health, family organizations, and researchers to better meet the needs of families.
Hibo Omer and Leah Burke, MD
As part of this work, NERGN hosts a website called Genetics Education Materials for School Success, or GEMSS. The aim of GEMSS is to assure all children with genetic health conditions succeed in school-life. It provides a family-friendly starting point to help family members learn more about genetic conditions and offer ideas to encourage inclusion and participation in the classroom. To learn more about GEMSS visit: www.gemssforschools.org.
NERGN also works to increase services for families by teaching primary care providers about issues related to genetics including how to inform and make timely referrals to genetic specialists. A recent webinar, co-presented by Dr. Leah Burke from Vermont and Hibo Omer from the New Mainers Public Health Initiative focused on genetic considerations for immigrants and refugees.
NERGN also recently completed a brochure: A Few Things to Know About Your Child’s Visit to the Genetics Clinic. Drawing on previous work by the Heartland Regional Genetics Network as well as feedback from local partners, this resource provides basic information on genes and genetic conditions, offers resources, and answers these questions:
Why was my child referred to the genetics clinic?
Why see a geneticist as opposed to her regular doctor?
What can I do while we wait for the appointment?
This is seen as very important, as the wait can be quite long and quite stressful. This is an ideal time to talk to other parents who have been through similar circumstances; to write down questions; and to check with your insurance plan to see if they cover genetic testing.
What will happen at the visit itself?
Will my child get a diagnosis at the first appointment?
What happens next?
You can find the brochure along with many other resouces in NERGN’s Resource Library at www.negenetics.org
Please feel free to contact Karen Volle at karen.volle@unh.edu about NERGN’s work and resources.
The New Hampshire Council on Developmental Disabilities offers a variety of grants for community projects, educational programs, leadership development, and demonstration programs that will increase quality of life for people with developmental disabilities through systems change.
Recent grants include:
$50,000 to Center for Life Management and Community Crossroads for a project to Implement New Strategies that Address the Needs of Individuals with a Dual Diagnosis of Intellectual/Developmental Disabilities and Mental Health Needs. This will include training to increase capacity in the system and data collection in hopes of expanding this innovative service approach throughout the state of New Hampshire.
$50,000 to University of New Hampshire to help providing Post-Secondary Educational Opportunities for Individuals with Intellectual Disabilities. The UNH-4U pilot project will aid in the developmental and implementation of Think College National Standards for a cohort of individuals with labels of intellectual disability.
$40,000 to Refurbished Equipment Marketplace (REM) for assisting individuals with intellectual and developmental disabilities in purchasing, servicing, and in the delivery of REM equipment. With this grant, Refurbished Equipment Marketplace will be able to continue to assist individuals with I/DD in obtaining and sustaining necessary devices and equipment that will further their independence and quality of life.
Please contact the NHCDD for information on grant opportunities. You can also see our grant applications on our website www.nhcdd.org. We will be glad to assist in filling out grant forms!
DD Council members and staff.
Jason Alexander Smith, facilitator of People First of NH, and NH Advocate, Katie Epstein.
NHCDD Executive Director, Isadora Rodriguez-Legendre, presenting NH Senator Dan Feltes with the Legislator of the Year Award.
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[title] => Institute on Disability at UNH
[subtitle] => Trainings & Events
[content] =>
nTIDE Lunch & Learn Webinar Series
On the first Friday of every month, corresponding with the Bureau of Labor Statistics jobs report, the Employment Policy and Measurement Rehabilitation and Research Training Center shares the results of the latest nTIDE via Zoom Webinar. In addition, we provide news and updates from the field of Disability Employment and host an invited panelist to discuss current disability related findings and events.
SAVE THE DATE – Assistive Technology Makers’ Fair 2020
The third annual Assistive Technology Makers’ Fair will inspire participants to become creative problem solvers, bringing together makers of all abilities to share ideas, develop new skills and enhance innovations for persons with disabilities. The Fair will empower individuals with the methods, materials, and know-how needed to efficiently create everyday just-in-time devices and technologies. Join us! Novice to veteran makers of all ages and abilities are welcome.
Date: Saturday, October 24, 2020
Time: 9:00am to 4:00pm
Location: Grappone Conference Center,
70 Constitution Avenue, Concord, NH 03301
Multi-Tiered Systems of Support for Behavioral Health & Wellness Coach Training
Effective team leadership and facilitation have proven to be key in implementing Multi-Tiered Systems of Supports with fidelity. This two-day training is designed for internal school coaches of Tier 1 (Universal), Tier 2 (Targeted), or Tier 3 (Intensive) teams. Participants will learn about best practices for supporting teams to use data-based decision making, establish buy-in, and ensure fidelity of MTSS-B implementation.
Dates: November 18, January 15, March 18
Location: Grappone Conference Center, Concord, NH
Cost: $400
DRC-NH is dedicated to eliminating barriers for people with disabilities across the state. Contact us to schedule a free consultation on a disability discrimination issue with an experienced attorney.
Know Your Rights: Issue Area Spotlights
Access to Services Clarified for People with Developmental Disabilities Ages 18-21
If otherwise eligible, individuals with developmental disabilities who are not yet 21 but who have graduated or exited school, should receive funding for a full range of developmental disability services, including home and community-based services. These services are administered through their area agency. More info available here.
Children with disabilities may be entitled to special education, related services, reasonable accommodations and modifications to enable them to receive a free appropriate education in the least restrictive environment. Some children may be eligible for Medicaid. For more information about these and other related topics, visit our Children’s Issues page.
This publication was supported solely by federal funding from grants from the Center for Mental Health Services, Substance Abuse and Mental Health Services Administration: Centers for Medicare and Medicaid-Real Choice System Change: U.S. Department of Health and Human Services, Administration on Developmental Disabilities; the Health Resources Services Administration, Maternal and Child Health Bureau, Office of Disability Employment Policy: U.S. Department of Education, Department of Rehabilitation Services; National Institute on Disability Rehabilitation and Research (NIDRR); US Department of Labor; Social Security Administration; and a grant from the New Hampshire Bar Foundation.
The contents are solely the responsibility of the grantees and do not necessarily represent the official views of the federal grantors.
Welcome to the Spring RAP Sheet where we celebrate the power of advocacy. This year marks the NH RAP Sheet’s 15th anniversary. From our very first issue, advocates have been the stars of the show. Whether fighting to end sub-minimum wages for workers with disabilities, attending every planning meeting to ensure a fully accessible Main Street, or persuading legislators to fund the waiting list – advocates have made our state a better place for all of us. This is my last issue as editor. Words cannot express how much this work as meant to me. Thank you to all those who have shared their stories and to all the readers who have enjoyed them. It’s been a great ride.
SUSAN COVERT, EDITOR
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[post_content] => Welcome to the Spring RAP Sheet where we celebrate the power of advocacy. This year marks the NH RAP Sheet’s 15th anniversary. From our very first issue, advocates have been the stars of the show. Whether fighting to end sub-minimum wages for workers with disabilities, attending every planning meeting to ensure a fully accessible Main Street, or persuading legislators to fund the waiting list – advocates have made our state a better place for all of us. This is my last issue as editor. Words cannot express how much this work as meant to me. Thank you to all those who have shared their stories and to all the readers who have enjoyed them. It’s been a great ride.
SUSAN COVERT, EDITOR
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[title] => Leaving Your Comfort Zone
[subtitle] => By Darlene Gildersleeve
[content] => Darlene Gildersleeve and her daughters arrive at the NH State House for the Budget Hearing.
In 2012, my son was diagnosed with a disability. I was in shock and felt scared and alone. Looking for help, I found the Family Voices Facebook page. Immediately, I was connected to a community of parents who understood what I was going through. Through Family Voices I met another mom, who told me about the Institute on Disability’s Leadership Series and encouraged me to apply. I was going through a painful divorce and between taking my son to counseling, specialists, and attending stressful IEP meetings, there was no time to do anything for myself.
Fast forward to 2017. My 11 year old daughter had been in the school nurse’s office over 20 times in a week. Something was terribly wrong. Twice I requested a Special Education Evaluation and was denied. Then came one of the worst moments of my life. The school called to tell me my daughter was suicidal. I rushed to the school and arrived to see my scared, crying daughter being put in the back of a police car. For three days, she was held like a prisoner in the loud, bright, and scary hospital emergency department. I cried more than I ever have in my life. On my knees I prayed she would get treatment and would live.
With no pediatric mental health beds in New Hampshire, my daughter has been hospitalized six times out of state. When another request for a Special Education Evaluation was met with resistance, I found the strength to be my child’s advocate and succeeded in getting an IEP in place. It was time to finally apply to the Leadership Series.
I walked into my first Leadership class shaking and nervous. For the first time ever, I was leaving my toddler, pre-teen, and older teenage son overnight. As we shared our stories, I saw others were nervous too. This was about to change. At each monthly training session, with guidance from excellent group leaders, we were being pushed out of our comfort zones and becoming more and more confident.
I found the courage to testify at two public sessions for New Hampshire’s 10 Year Mental Health Plan. I advocated for a plan that address children’s mental health; something previous plans have not done. I learned about the Children’s Behavioral Health Collaborative and signed up for their legislative advocacy training. It was fantastic! This was followed by Leadership’s session with state legislators; each class member invited their legislators to attend. I had never made a call to a legislator. When I called Senator Feltes’ office, I was trembling. The calls to my representatives were easier.
In February, my daughter Anna and I testified in support of bill which would expand the state’s behavioral health services to include Mobile Crisis Response Services for children. We were interviewed by a reporter following up on the hearing. Our story made the front page of the Concord Monitor! I testified on other mental health bills and legislation to establish Paid Family Medical Leave, something especially important to me as I was unable to work when my daughter was hospitalized. I wrote my first letter to the editor and it was published. I have testified at the State Budget hearing and advocated for full funding of the 10-Year Mental Health Plan. In March I spoke at the State House rally urging the Governor to sign the paid family and medical leave bill that was passed by the legislature. I am currently working with the Hopkinton School District to set up a Parent-School Special Education Partnership Group for our community.
None of this would have been possible without the knowledge, confidence, and empowerment that the Leadership Series has given me. I am so grateful for this opportunity and encourage others who want to make a difference to apply to the New Hampshire Leadership Series.
Darlene Gildersleeve and her daughters arrive at the NH State House for the Budget Hearing.
In 2012, my son was diagnosed with a disability. I was in shock and felt scared and alone. Looking for help, I found the Family Voices Facebook page. Immediately, I was connected to a community of parents who understood what I was going through. Through Family Voices I met another mom, who told me about the Institute on Disability’s Leadership Series and encouraged me to apply. I was going through a painful divorce and between taking my son to counseling, specialists, and attending stressful IEP meetings, there was no time to do anything for myself.
Fast forward to 2017. My 11 year old daughter had been in the school nurse’s office over 20 times in a week. Something was terribly wrong. Twice I requested a Special Education Evaluation and was denied. Then came one of the worst moments of my life. The school called to tell me my daughter was suicidal. I rushed to the school and arrived to see my scared, crying daughter being put in the back of a police car. For three days, she was held like a prisoner in the loud, bright, and scary hospital emergency department. I cried more than I ever have in my life. On my knees I prayed she would get treatment and would live.
With no pediatric mental health beds in New Hampshire, my daughter has been hospitalized six times out of state. When another request for a Special Education Evaluation was met with resistance, I found the strength to be my child’s advocate and succeeded in getting an IEP in place. It was time to finally apply to the Leadership Series.
I walked into my first Leadership class shaking and nervous. For the first time ever, I was leaving my toddler, pre-teen, and older teenage son overnight. As we shared our stories, I saw others were nervous too. This was about to change. At each monthly training session, with guidance from excellent group leaders, we were being pushed out of our comfort zones and becoming more and more confident.
I found the courage to testify at two public sessions for New Hampshire’s 10 Year Mental Health Plan. I advocated for a plan that address children’s mental health; something previous plans have not done. I learned about the Children’s Behavioral Health Collaborative and signed up for their legislative advocacy training. It was fantastic! This was followed by Leadership’s session with state legislators; each class member invited their legislators to attend. I had never made a call to a legislator. When I called Senator Feltes’ office, I was trembling. The calls to my representatives were easier.
In February, my daughter Anna and I testified in support of bill which would expand the state’s behavioral health services to include Mobile Crisis Response Services for children. We were interviewed by a reporter following up on the hearing. Our story made the front page of the Concord Monitor! I testified on other mental health bills and legislation to establish Paid Family Medical Leave, something especially important to me as I was unable to work when my daughter was hospitalized. I wrote my first letter to the editor and it was published. I have testified at the State Budget hearing and advocated for full funding of the 10-Year Mental Health Plan. In March I spoke at the State House rally urging the Governor to sign the paid family and medical leave bill that was passed by the legislature. I am currently working with the Hopkinton School District to set up a Parent-School Special Education Partnership Group for our community.
None of this would have been possible without the knowledge, confidence, and empowerment that the Leadership Series has given me. I am so grateful for this opportunity and encourage others who want to make a difference to apply to the New Hampshire Leadership Series.
Jocelyn Marie Curtin, daughter of Marlyn and John Curtin, passed away peacefully on November 19,
2018 at the age of 40. For New Hampshire advocates, Jocelyn was a pivotal figure. Marlyn, who graduated from the New Hampshire Leadership Series in 1988, widely shared her daughter’s story. Through Marlyn’s connection with the Institute on Disability-UNH, hundreds of educators and school administrators have been inspired by Jocelyn and her family’s example of creating a full life in the community.
As Jocelyn got older, she began to tell her own story. Using a communication device, Jocelyn co-taught the courses “Facilitating Friendships” with Dr. Cheryl Jorgensen and “Teaching Exceptional Learners” with Susan Shapiro. Her presence in the classroom and her story influenced so many UNH students as they prepared for their careers. Jocelyn also was the highlight in the IOD film Voices of Friendship, which is still being used to teach the value of providing opportunities for real friendships.
Thank you Jocelyn Curtin for being a shining example for inclusive education and full community lives. Within our state and beyond, we are in debt for the lessons that you have taught us. We are grateful to the Curtin family who in their time of loss have generously directed memorial funds to the New Hampshire Leadership Series. To make a donation – https://iod.unh.edu/projects/nh-leadership/donate
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[post_date] => 2020-04-22 11:18:36
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Jocelyn Marie Curtin, daughter of Marlyn and John Curtin, passed away peacefully on November 19,
2018 at the age of 40. For New Hampshire advocates, Jocelyn was a pivotal figure. Marlyn, who graduated from the New Hampshire Leadership Series in 1988, widely shared her daughter’s story. Through Marlyn’s connection with the Institute on Disability-UNH, hundreds of educators and school administrators have been inspired by Jocelyn and her family’s example of creating a full life in the community.
As Jocelyn got older, she began to tell her own story. Using a communication device, Jocelyn co-taught the courses “Facilitating Friendships” with Dr. Cheryl Jorgensen and “Teaching Exceptional Learners” with Susan Shapiro. Her presence in the classroom and her story influenced so many UNH students as they prepared for their careers. Jocelyn also was the highlight in the IOD film Voices of Friendship, which is still being used to teach the value of providing opportunities for real friendships.
Thank you Jocelyn Curtin for being a shining example for inclusive education and full community lives. Within our state and beyond, we are in debt for the lessons that you have taught us. We are grateful to the Curtin family who in their time of loss have generously directed memorial funds to the New Hampshire Leadership Series. To make a donation – https://iod.unh.edu/projects/nh-leadership/donate
[post_title] => In Memoriam
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[title] => The NH Leadership Series – Unleashing the Power of Advocacy
[subtitle] => By Nancy Glynn, NH Leadership Series Engagement Coordinator, Institute on Disability-UNH
[content] =>
The Institute on Disability’s New Hampshire Leadership Series is an intensive, nine college credit, eight-month program that provides leadership and advocacy training for individuals with disabilities and their family members. Since 1988, the program has provided state-of-the-art information and strategies to effect change on disability related issues locally and across the state. It is recognized as a pivotal change experience for family members and adults with disabilities participating in the program.
As a result of the work of its 1,000 alumni, New Hampshire has achieved national recognition for its innovative approaches to support people with disabilities and their families in their communities.
Alumni of the program hold leadership positions in state and national organizations, have founded advocacy organizations, and are represented at all levels of local, state, and federal government. Following Leadership training, Maggie Hassan was elected to the New Hampshire Senate. She went on to serve two terms as Governor and now represents New Hampshire in the United State Senate.
Recent Leadership graduate Maya Levin’s four-year-old son Andy has deep love for horses and all things equestrian. Andy also experiences autism. Since graduating from Leadership in 2018, Maya has worked to expand inclusive opportunities for children and their families in her home community of Derry. Using her personal connections and reaching out through social media, she is organizing parents of children who experience disability. Maya also has worked with her local school board to offer trainings and resources to parents in the district. Trainings have included partnering with the Parent Information Center, A Basic Guide to the IEP Process, and Conflict Resolution in IEP
NH Leadership graduate Maya Levin with her family Photo courtesy of Levin family
Meetings. She participates in the “Read to Me” program at her son’s school, choosing books that illustrate the value of welcoming and including children who experience disability.
Maya has testified at school board meetings and submitted testimony on bills coming before the New Hampshire Legislature. Maya firmly believes that parents and families should have a voice in the decisions that will affect their children. She is currently working with families to form a Special Education Parent Advisory Committee for the Derry School District. Maya credits the New Hampshire Leadership Series with supporting her growth and leadership as an effective advocate.
To learn more about the Leadership Series, nominate a candidate for Leadership, request an application for the next session, or make a donation to support the Series, go to https://iod.unh.edu/projects/nh-leadership
The NH Leadership Series is a self-funded 501 (c) 3 program of the Institute on Disability at UNH and is only made possible through financial support from our donors and partners.
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[title] => As Long as it Takes
[subtitle] => By Regan Burke Lamphier, Kent Street Coalition
[content] =>
New Hampshire has a mental health care problem, and our state does not seem to be able to fix it. Adults and children alike who are experiencing an acute mental health crisis often spend days or even weeks in hospital emergency rooms waiting for a bed in a psychiatric facility to become available. It would be intolerable if a hospital admitted a patient in acute physical pain and then waited days before providing treatment. It should be equally unacceptable when a hospital fails to provide appropriate care for someone in the midst of a mental health crisis.
Kent Street Coalition members in the halls of the legislature
Kent Street Coalition, a progressive grassroots organization established after the 2016 election, has been working tirelessly to end the emergency boarding room crisis. Kent Street members became aware of the lack of mental health care services only a few months after the group was formed. We were shocked to learn that every day in our state between 20 and 50 adults and children suffering mental health crises in hospitals are going untreated. Being stuck in an emergency room even for a few hours is bad enough; spending days or weeks there is inhumane.
After brainstorming ideas to bring public attention to this crisis, members of Kent Street Coalition came up with an innovative strategy. On a cold morning in April 2017, legislators arriving at the State House were greeted by a dozen protestors clad in hospital gowns. They carried hand lettered signs like ‘Stuck in the ER’ and ‘I Would be Better Off Having a Heart Attack’. Other signs listed the number of patients – 46 adults and 4 children – who were currently in hospital emergency rooms awaiting appropriate mental health care. The sight stunned legislators and was shocking enough to gain prominent media attention. Significantly, by staging a highly visible event that included a dramatic prop we were able to start a conversation about a systemic problem in our state.
The hospital gown vigil prompted an invitation to meet with Governor Sununu’s Policy Advisor. That meeting resulted in Kent Street Coalition being offered a seat on the Governor’s Working Group on Mental Health, an advisory group put together to address the state’s mental health crisis. In addition, as a result of our work, the New Hampshire Chapter of the National Alliance for the Mentally Ill (NAMI) invited Kent Street to participate in their monthly public policy meetings.
Despite increased attention to this issue by the Governor and the legislature we have yet to see any measurable progress in the mental health boarding crisis. It has been two years since the first State House vigil and there are still scores of adults and children languishing in hospital emergency rooms awaiting appropriate placement for mental health care. Amid frustration at the lack of action, Kent Street Coalition continues to show up, speak out, don our hospital gowns, and wield our signs. In November 2018 Kent Street member turned out in force at the public hearing for New Hampshire’s proposed 10-year mental health plan. Giving public testimony dressed in a hospital gown ensured that the mental health crises in emergency rooms was well covered by the media.
Recent signs offer some hope moving forward. Governor Sununu’s 2019 budget includes improvements to the mental health care network. In January 2019 the Governor and the New Hampshire Department of Health and Human Services released the 10-Year Mental Health Plan calling for a statewide mental health system that provides access to a full continuum of care. This includes crisis supports and services, with specific recommendations for increased numbers of psychiatric beds and emergency department reforms to eliminate long wait times for psychiatric hospitalization.
Kent Street Coalition is committed to seeing this through. With hospital gowns and signs at the ready, we will continue to keep the focus on improving mental health services in our state. How long do we plan to keep this up? As long as it takes.
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[title] => ABLE NH
[subtitle] => By Lisa Beaudoin, Director ABLE NH
[content] =>
ABLE NH (Advocates Building Lasting Equality in NH) is a grassroots, member-driven organization whose mission is to advocate for the civil and human rights of children and adults with disabilities. Founded in 2009, ABLE NH promotes the full participation of individuals with disabilities by improving systems of support, connecting families, inspiring communities, and influencing public policy. ABLE NH is the Granite State’s only disability justice organization that is free from public funding. As an independent non-profit organization, ABLE NH has the freedom to engage in courageous conversations and actions and challenges discriminatory practices without fear of losing funds.
Over the course of its ten year history, ABLE NH has been a key player in bringing about positive changes in our state. In 2012, while still an all-volunteer organization, members of ABLE NH advocated for and secured an additional $3 million for the Developmental Disability Wait List. This resulted in an additional 70 New Hampshire families receiving Medicaid funding for community based services for their adult family members who experience disabilities.
In 2014, ABLE NH initiated and organized a statewide effort to ban the payment of sub-minimum wages to people with disabilities, a legal practice which dated back to the 1938 Fair Wages Act. Working In partnership with families and disability advocacy organizations, ABLE NH worked for the passage of Senate Bill 47, making New Hampshire the first state in the nation to ban the payment of sub–minimum wages to workers solely on the basis of their disability.
For six long years, ABLE NH members and disability coalition partners waged war against the takeover of community based developmental services by corporate managed care organizations (MCOs). ABLE NH organized its members – individuals who experience disabilities and their families – to save New Hampshire’s community based, person-centered system of long-term care. This sustained effort resulted in the 2018 passage of legislation that eliminated the plan to shift the State’s responsibility for long-term supports and services for people with disabilities to MCOs . ABLE NH will continue to fiercely defend New Hampshire’s community-based system of services, one that is overseen by families and has earned our state the 3rd highest rating in the nation in the quality of life for people with disabilities.
Most recently, ABLE NH is leading a statewide effort to have oral health care covered under Medicaid. We are excited to have strong leaders in ABLE NH’s Nashua Chapter who are focusing on this issue and working tirelessly to support the passage of House Bill 692 which would amend state Medicaid policy to include dental care. For a complete list of ABLE NH accomplishments: https://www.ablenh.org/wins-successes/
ABLE NH is growing and we’d love you to join the team! Across NH, ABLE chapters are working to create more inclusive communities by removing barriers and fixing the small “system” problems that keep individuals who experience disability from being fully included. Typically, these are short-term campaigns focused on local issues impacting education, employment, health care, accessibility, and community engagement. At the state level, ABLE NH has three task forces – Inclusive Education, Transition to Employment, and Disability Diagnosis Dialogues – addressing statewide issues that require a longer, sustained campaign to affect change.
Throughout the year, ABLE NH offers a variety of trainings on community organizing to provide individuals with the advocacy skills necessary to bring about positive change. We are building of an army of Love. ABLE NH is working to advance equity, opportunity, and inclusion for all regardless of ability. We are breaking down barriers in the lives of people with disabilities by organizing ordinary people to become extraordinary leaders. To learn more please visit our website www.ablenh.org or email lisab@ablenh.org.
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[title] => Overcoming Adversity to Find Strength in Advocacy
[subtitle] => By Isadora Rodriguez-Legendre, Executive Director NH Council on Developmental Disabilities
[content] => Roberta Gallant and Senator Maggie Hassan Photo courtesy of the NH Council on Developmental Disabilities
We cannot talk about advocacy in New Hampshire without talking about Roberta Gallant. When Roberta tells her story, she often says that she found her strength in advocacy because of her experiences living in an institution. In 1956 when she was five years old, her parents admitted Roberta and her four-year old sister Jocelyn to the Laconia State School and Training Center. While they continued to have some connection with their family, like most institutional residents, Roberta and Jocelyn spent their childhood isolated from family and their community. While they were at the State School, both sisters suffered significant abuse.
Roberta says her independence and ability to advocate for herself began with her fight to learn how to read. “I saw the other students read books in the classrooms at the State School. I started asking people at Laconia State School to teach me how to read and write. I was persistent. I refused to stop begging them until they finally agreed to teach me.”
In 1981, after twenty five years living in the institution, Roberta left the State School. (Jocelyn had moved to Henniker in 1979.) Roberta settled in Laconia where her housing, healthcare, and employment services were provided through the Area Agency. Roberta continued her education and became a student at the Adult Basic Education Program at Laconia High School. Living in the community, Roberta advocated for the rights to education for adults with disabilities who had been denied a public education as children. She received The Arc of NH Citizenship Award for her work and in 1992, the Martin Luther King Jr. Coalition recognized Roberta for her advocacy on behalf of individuals with disabilities.
In 1999, Roberta moved into her own apartment in Concord. “I wanted to live alone. Living alone did not make me feel lonely. I made some new friends. I am so proud of myself for my accomplishments.”
Roberta continued to harness the power of her story and used it to advocate for people with disabilities. In 2007 she was appointed to the New Hampshire Council on Developmental Disabilities. As a Council member she helped to educate legislators and members of the community about her experiences in the State institution.
Roberta is an active member in a number of advocacy organizations including: People First of New Hampshire, Capitol City Self-Advocates, Self-Advocates Leadership Team (SALT), North East Advocates Together (NEAT), and Advocates Building Lasting Equality (ABLE) NH. After taking three years off, she is once again a member of the DD Council. Through her work on legislative issues, Roberta is well known at the State House and has developed relationships with many long-time legislators. She continues to call on legislators to take the actions that are needed to improve the lives of citizens with disabilities.
In sharing her story, Roberta has been a voice for deinstitutionalization and community inclusion in the Granite State and beyond. She is a regular presenter at the New Hampshire Leadership Series and the annual New Hampshire Family Support Conference where she has spoken about how her experiences led to advocacy. She was a New Hampshire representative at the national Self-Advocates Becoming Empowered (SABE) conferences in 2008 and again in 2018. She also recently attended the National Councils on Developmental Disabilities’ annual conference in Washington, DC.
In addition to her advocacy, it is important to note that from 2008 until her retirement in February 2019, Roberta worked at the Bureau of Developmental Services. Roberta was a valued team member, who was paid a fair wage for her work, and very proud of the job she did. Colleagues and friends filled the room at her retirement party. Co-workers and others whose lives she had touched talked about what Roberta meant to them and wished her well.
We thank Roberta Gallant for making a difference. Through her tireless advocacy, she has fought for the rights of people with disabilities and has worked to ensure that in New Hampshire they are welcomed and included. As Roberta says in her presentation about Laconia State School, “Living in the past, takes away the present and the future… I will always advocate to go forward and let go of the past. The present is a wonderful place to be.”
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[title] => Youth Leadership in NH
[subtitle] => By Heidi Cloutier, IOD-UNH Project Director and Hannah Raiche, Youth MOVE NH Program Coordinator
[content] =>
In the wake of school violence, the “Me Too” movement and widespread behavioral health issues, youth all across America are stepping up demanding change. Their leadership is creating a cultural shift. Instead of adults making decisions for youth, youth are now being engaged as equal partners to address issues and bring about lasting change. For youth to have a meaningful role in transforming schools and our larger communities, they must not only be at the table, but share equally in decision making.
By moving away from adult-directed initiatives and embracing shared partnerships with youth, organizations evolve and grow and youth leaders flourish. In our work, we have seen organizations move from surveying youth for their ideas and input, to recognizing youth leaders as experts on their school and community’s culture. Working in partnership, they have identified challenges, set goals, and developed action plans for implementing positive changes.
The Institute on Disability-UNH and Youth Move NH have been working collaboratively since 2008 to provide education, leadership training, and technical assistance to elevate youth voice in New Hampshire. This effort has included peer support, school based youth leadership teams, youth advocacy training, and convening youth organizations from around the state to collaborate and share resources. NH Youth Leadership has trained over 200 youth leaders who are committed to sharing their lived experiences, ideas, energy, and expertise to bring about positive changes not only in their own lives, but in their communities and in our state.
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[title] => Advocating for Oral Health
[subtitle] => By Vanessa Blais, Project Assistant and Isadora Rodriguez-Legendre, Executive Director NH Council on Developmental Disabilities
[content] =>
Kelly Ehrhart knows that having a tooth ache is painful in more ways than one. Kelly requires medication that has the unfortunate side effect of causing dental problems. She has had to miss work because of extreme tooth pain. Kelly, whose health care is covered through Medicaid, is frustrated that Medicaid will pay to have her tooth pulled, but will not pay for the cost of a filling or root canal that could save the tooth. To prevent tooth decay, Kelly needs to have her teeth cleaned four times a year. With preventative oral health care not covered by Medicaid, Kelly pays out of pocket for these cleanings. This is a significant annual expense for someone who is on a fixed income.
In 2018, Kelly was accepted into the Institute on Disability’s New Hampshire Leadership Series, an intensive program that provides leadership and advocacy training for individuals with disabilities and their families. After participating in a training session focused on Medicaid, Kelly and fellow Leadership classmate Danielle Poirier teamed up to take on the challenge of expanding Medicaid coverage to include oral health care for adults with disabilities. Kelly and Danielle,
Danielle Poirier testifies at the House Committee hearing on HB 692
who are both from Nashua, worked with ABLE NH Director Lisa Beaudoin to organize an ABLE chapter in Nashua. The Nashua chapter’s primary focus has been to advocate for changes in Medicaid policy to provide coverage of preventative oral health care for individuals with disabilities.
In October 2018, as part of their campaign to improve access to dental care, Kelly, Danielle, and Lisa appeared on Gate City Chronicles, a Nashua Community Access television program produced and hosted by former Senator Kevin Avard. They discussed the struggles that Medicaid recipients have with oral health and the secondary diseases that often occur due to lack of preventative oral health care. (To view the program – https://www.youtube.com/watch?v=eDsQkvRQEDU)
When the New Hampshire legislative session began in January, ABLE New Hampshire joined disability advocates from around the state to fight for the passage of House Bill 692 amending New Hampshire’s Medicaid policy to include dental care. The Nashua Chapter of ABLE created and distributed a flyer on oral health care, solicited personal stories to share with legislators, and organized turn out for the bill’s committee hearings.
Kelly Ehrhart founding member of ABLE NH’s Nashua Chapter.
Kelly and Danielle emphasized that they wanted legislators to know that preventative oral health care would result in significant cost-savings. Heart disease, strokes, and other illnesses can be linked to poor oral health. By providing adults with preventative oral health care coverage, Medicaid would see reduced treatment costs for these secondary diseases, fewer number of emergency room visits, and a decrease in medications. Equally important, having access to dental care improves quality of life, increases self-confidence, expands employment opportunities, and supports community engagement for individuals with disabilities.
While HB 692 is still working its way through the legislature, things are moving in the right direction. There was huge supporter turnout at the House Health, Human Services, and Elder Affairs Committee’s hearing on the bill. HB 692 came out of the Committee with an Ought to Pass recommendation and has been passed New Hampshire House of Representatives. It now goes on to the Senate.
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[title] => Art as Advocacy
[subtitle] => By Heather Stockwell, Rights & Democracy NH
[content] =>
Throughout history art has helped us to celebrate the things we value, as well as contemplate perspectives different than our own. Art provides an opportunity to dive into a topic we are unfamiliar with and to be open to new ideas. In the past art was reserved for the rich and the royal. Today art is for everyone and made by everyone.
Rights & Democracy NH press conference at the NH Legislative Office Building. Poster images by Heather Stockwell.
New Year’s 2018 I made a resolution to paint more. The beginning of the year started out great and then I started a job as a grassroots organizer with Rights & Democracy. I began spending more time advocating and teaching others to advocate for themselves. My personal journey got put on the back burner for a while. Once again, I resolved to “paint more” and used my time off to escape into my own creative world. What I found happening was my advocacy world was colliding with my art world.
I began reflecting on how artists have affected social change through their work. I thought about the power of Norman Rockwell’s painting “The Problem We All Live With (Ruby Bridges)” that depicted a the first black child to attend an all white elementary school. I thought about the murals of Diego Rivera and Pablo Picasso with their message about social injustice and war. I recalled the “Rosie the Riveter” image from World War II and Shepard Fairey’s Obama/Hope poster and how they became icons of their eras. When I was in college, the Guerilla Girls, an anonymous group of female artists, were bringing gender and racial inequality into focus. Today graffiti artist Banksy is putting his political message out onto the street, bypassing galleries altogether.
My own perception of what art could be was changing. I thought about how it could be used to help heal us and bring us together in times where so many people are struggling to understand what is happening to our country. I believe that we are at the tipping point of a change. The more that we the people confront the problems facing us and use our voices and lift up the voices of all of those around us, the more change we will begin to see. As the end of the year approached, I finished a series of graphic images to accompany Rights & Democracy’s project the “People’s Platform” . My worlds of art and advocacy had merged.
During this past year I’ve realized how isolated you can feel as an artist. I began to reach out to other artists who are interested in social justice to explore the idea of showing work as a collective. As we have thought about this, we made the decision to expand our reach beyond the visual arts to include music, dance, theater, video, and performance based works. We have started a New Hampshire Social Justice Artists Facebook page and plan to have a first meeting soon. We’d love to have you join us in building a network of artists creating change across the Granite State. For more information – New Hampshire Social Justice Artists Facebook Page
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[title] => Self-Advocacy is for Everyone
[subtitle] => By Kathy Bates
[content] =>
I learned a long time ago the wisest thing I can do is be on my side, be an advocate for myself and others like me. -Maya Angelou
I’ve been advocating for myself and others with disabilities since I was in grade school. This was before the passage of the Education of All Handicapped Children Act in 1975 and there weren’t many kids who had obvious disabilities in public school during the late sixties and early seventies. I learned how to advocate for myself by watching my parents fight for me to have typical learning experiences.
Advocacy has always been a natural fit for me. Over the course of my career, I have had years of experience working with children and adults with disabilities. Helping others to find their voices and advocate for themselves is a passion of mine. Advocacy is about self-awareness, understanding your needs, and being able to ask for the help you need to achieve your goals.
I am currently the facilitator and a member of the Self-Advocacy Leadership Team (SALT). Originally a task force of the New Hampshire Council on Developmental Disabilities, SALT now consults with other advocacy organizations as well. In our most recent project, we helped to rewrite New Hampshire’s Adult Protective Services laws to make them easier for everyone to read and understand. We also created a brochure to educate the public about this project. SALT has chosen to work on issues that are important to the wider community, not just those that concern people with disabilities.
SALT members getting down to work. Photo courtesy of NH Council on Developmental Disabilities
Given my personal history and work with SALT it might surprise you to know that I really don’t like the term self-advocate and how it has become synonymous with the word disabled. For example, if I am at a conference, I’m labeled a self-advocate along with every other person with a disability who is in attendance. The rest of the people at the conference are referred to as participants. Aren’t we all participants? Here‘s the kicker, this isn’t just something that happens at conference or an event, I am forever labeled a self-advocate. I think that’s strange because people without disabilities advocate for themselves all the time, yet they are never called self-advocates. Self-advocacy skills are very important for everyone to learn and disability should have nothing to do with it.
There is nothing wrong with having a disability. I use a wheelchair to get around and I’m not embarrassed by it at all. I also understand that there are times when labels are necessary. A diagnosis of a disability is a label that provides access to the equipment and services I need. My label of Cerebral Palsy gives me the right to have my really cool powerchair, my adjustable bed, and my accessible house. It also lets me take advantage of personal care services and physical therapy. I could not imagine my life without these tools; they are critical to my ability to live as independently as possible.
The funny thing about a label – whether it is a disability diagnosis or the term self-advocate – is that it doesn’t tell you anything about the person who has been labeled. If there are fifty people in a room who have CP or who are labeled self-advocates, their strengths and challenges will all be different. For me, I would rather be known as Kathy the blond chick who gets around in really cool wheelchair! We don’t need another word that is code for disabled. It really is okay to have a disability. It’s the only minority that anyone can join at any time. Maybe, I could just be known as Kathy Bates, the writer who likes to give people something to think about.
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[title] => ADVOCATE NH
[subtitle] => By Members of the Advocate NH Planning Team
[content] =>
“Advocacy is important to help others who might not be able to help themselves.” “No one knows your story better than you.” “Advocacy is important to tell others what you think. It makes your interactions stronger.”
These are all answers to the question, Why is it important to be an advocate? Advocacy for people with disabilities, led by people with disabilities, is critical to the success of any disability advocacy movement. Advocate NH is committed to helping people with disabilities gain the skills they need to become effective advocates.
Originally known as NH Allies in Self-Advocacy, the group first came together in 2011 as part of a national initiative under the US Administration on Developmental Disabilities (ADD). In March of 2012, the New Hampshire team joined advocates from around the country at the National Advocacy Summit in Washington, DC. Members left the Summit with an appreciation of how important it is for advocates to share their stories, identify issues, and learn from one another. The group wanted to bring this experience back to New Hampshire. After a year of planning, in 2013 the group hosted the state’s first Advocate: Learn it! Live it! Love it!Conference.
The statewide conference is now an annual event. In 2018, over 100 people gathered in Concord for Advocate NH’s sixth conference, Lights, Camera, Advocacy! focused on helping people learn the advocacy skills they need to live their best life. Conference Spotlight Sessions included: Staying Safe in Your Community, Exercising Your Right to Vote, and Getting Involved with a Self-Advocacy Group. Talking about the event, one participant said, “The conference far exceeded my expectations!”
Advocate NH is now hard at work planning their seventh annual conference, The Future of Advocacy. It will be held on Friday, September 27, 2019 at the Grappone Center in Concord. Sessions about assistive technology, health and fitness, dating and relationships, and employment are in the works. Why should you attend? It’s a great opportunity to meet other strong advocates and hear their stories. You will learn new things, and gain confidence in your ability to advocate.
Advocate NH is always looking for more members to help plan the conference and talk about advocacy. If you are interested in joining, please contact Cat Jones at 603-228-2084 or email contact.iod@unh.edu. The group meets the second Tuesday of every month from 2:00–4:00 in Concord. You can attend in person or on-line via Zoom.
Get out your calendars now and save the date – September 27, 2019 – for the 7th Annual Advocate NH Conference!
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[title] => Allies in the Aisles - NH Bipartisan Legislative Disability Caucus
[subtitle] => By Representative Tamara Le, Rockingham District 31
[content] => NH State Representative Tamara Le
“How can I help?” This is often the beginning of the conversation when I approach a colleague about legislation involving persons with disabilities.
Along with over 100 legislators, I am a member of the NH Legislative Bipartisan Disability Caucus. Now in its second term, the caucus was born out of a need to educate newly elected legislators and keep veteran legislators up to date on disability related issues. The caucus is not a formal body with bylaws or regularly scheduled meetings. As a legislator, one quickly learns that in order to get real support on something, you stop to chat in the elevator and corridors. You make allies in the aisles and find teammates in the tunnel.
Showing respect and building relationships are fundamental to long-term advocacy and organizing. Most legislators are not immune to the emotions triggered when confronted with examples of discrimination or unfairness and are not shy about expressing their anger when needed. However, caucus members understand that we can be most effective in advocating for disability related legislation by being a consistent presence in the legislature and a constant voice of truth.
Helping others to understand and share our vision is key. Taking a multi-pronged approach and casting a wide net helps to gain credibility. As caucus members we realize we need to connect not only with elected officials, but also with industry leaders, citizen advocacy groups, professionals, lobbyists, and anyone who has a stake in the issue. Having conversations with those who are in opposition can also be helpful. We are looking to answer questions, solicit ideas, address concerns, and build support. Our most important job – to listen. Listen to others’ experiences. Listen to their feedback. Does their perspective offer insight in how or why we might or might not be successful?
In working together as a caucus, common sense and basic humanity are reliable guard rails. There are certain bills my most ardent philosophical opponents will support and others that kindred spirits will dismiss. As an example, members of the caucus were divided on school choice legislation. As someone whose commitment to inclusion and accessibility is unwavering, I could not bring myself to support any bill that was exclusionary. Many very compassionate and reasonable legislators in our caucus supported school “choice” for their own reasons and their own constituents. You learn to never take things personally, because right after one bill flies or dies, you find you are working on ten more.
In this session, the New Hampshire House passed bills that formerly lacked adequate bipartisan support. Legislation to establish a Deaf Child’s Bill of Rights and an Advisory Council on the Education of Deaf Children and a bill to establish a registry for the deaf, hard of hearing, and deaf/blind were voted through the Health Human Services and Elderly Affairs Committee unanimously and were passed by the full House with no floor debate. It was significant that these bills had bipartisan sponsors that included House and Senate leadership and newly appointed members of the New Hampshire Commission on Deafness and Hearing Loss.
When a piece of legislation that would improve the lives of people with disabilities does not move forward, the reason is most often lack of funding. In and of itself, this is not all bad news. New Hampshire is fortunate to have significant bipartisan support on disability related issues.
When thanking a caucus member or colleague for their input and support on a bill, it is not surprising to get the response, “Glad I could help.”
On the first Friday of every month, corresponding with the Bureau of Labor Statistics jobs report, the Employment Policy and Measurement Rehabilitation and Research Training Center shares the results of the latest nTIDE via Zoom Webinar. In addition, we provide news and updates from the field of Disability Employment and host an invited panelist to discuss current disability related findings and events.
Responsive Practice enhances health care providers’ ability to deliver disability-competent care that is accessible to people with intellectual, mobility, and other disabilities. Register today to learn strategies and approaches to identify, address, and help remove barriers to care. There are trainings on Providing Health Care & Screenings to Individuals with Disabilities and Providing Mammography to Women with Disabilities. CEU’s are available.
INTELLIGENT LIVES stars three pioneering young American adults with intellectual disabilities – Micah, Naieer, and Naomie – who challenge perceptions of intelligence as they navigate high school, college, and the workforce. Academy Award-winning actor and narrator Chris Cooper contextualizes the lives of these central characters through the emotional personal story of his son Jesse, as the film unpacks the shameful and ongoing track record of intelligence testing in the U.S.
The NH Leadership Series is an innovative annual training program that provides participants with information and strategies to effectively impact organizations and policies on issues related to disabilities. Applications for the 2019-2020 Series will be accepted on a rolling basis during Spring/Summer 2019.
This year’s program, Value in Us All: Advancing Inclusive Practices, focuses on the dignity and inclusion of service recipients and their families. Inclusive practices value the unique cultural identities, positive characteristics, and the dreams of individuals and their families. The training will include 2 keynote presentations, 3 panel presentations, a research poster session, and 20 breakout sessions from 5 content strands: Strength-Based Approaches; Psychiatry and Integrated Health;START Best Practices and New Strategies; Crisis Response; and Policy, Practices, and Community Inclusion.
Date: May 6 – 8, 2019
Time: 9:00 am – 5:00 pm
Location: Crystal Gateway Marriott, Arlington, VA
Using the Science of Implementation to Make Long-Lasting Change
A 2-day forum for individuals and teams responsible for implementing practices and/or supporting large-scale initiatives. Teams will learn how to implement a new practice, project, or framework by drawing on proven implementation strategies. Each team will learn to improve fidelity of implementation, enhance the sustainability of implementation efforts, and scale-up successful programs and practices.
Date: May 8-9, 2019
Time: 9:00am-4:00pm
Location: Grappone Conference Center, Concord, NH
Cost: $599 per attendee
The New England Regional Genetics Network Annual Meeting
Join the New England Regional Genetics Network (NERGN) at their Annual Meeting to receive updates on research and projects taking place around the region.
Date: May 16 & 17, 2018
Time: 9:00 am – 4:00 pm
Location: Portsmouth, NH
Effects of Substance Abuse on Young Children
Join the NH-ME LEND program and Dartmouth Hitchcock Medical Center’s Department of Psychiatry for their Spring Conference. This year the conference will look at the effects of substance abuse on young children.
Partner with others who are passionate about supporting people with disabilities and family members within their communities. The NH leadership Series is committed to building a culturally diverse class and encourages applications from people of color, individuals with disabilities and veterans.
This publication was supported solely by federal funding from grants from the Center for Mental Health Services, Substance Abuse and Mental Health Services Administration: Centers for Medicare and Medicaid-Real Choice System Change: U.S. Department of Health and Human Services, Administration on Developmental Disabilities; the Health Resources Services Administration, Maternal and Child Health Bureau, Office of Disability Employment Policy: U.S. Department of Education, Department of Rehabilitation Services; National Institute on Disability Rehabilitation and Research (NIDRR); US Department of Labor; Social Security Administration; and a grant from the New Hampshire Bar Foundation.
The contents are solely the responsibility of the grantees and do not necessarily represent the official views of the federal grantors.
Welcome to the Summer issue of the RAP Sheet. In the best of circumstances, obtaining an accurate diagnosis, finding appropriate supports, and navigating the maze of a bureaucratic service system can be overwhelming for individuals with disabilities and their families. These challenges are significantly compounded for those who are not members of the dominant or majority culture. In this issue we look at the importance of finding ways to meetthe needs of diverse communities.
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[post_content] => Welcome to the Summer issue of the RAP Sheet. In the best of circumstances, obtaining an accurate diagnosis, finding appropriate supports, and navigating the maze of a bureaucratic service system can be overwhelming for individuals with disabilities and their families. These challenges are significantly compounded for those who are not members of the dominant or majority culture. In this issue we look at the importance of finding ways to meetthe needs of diverse communities.
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[title] => Finding Their Way
[subtitle] => By By Déodonné Bhattarai, Communications Specialist, Disability Rights Center-NH
[content] =>
Tabla player Prem Sagar and singer Hari Maya Khatiwada are renowned musicians. They met in Varanasi, India when both were attending graduate school. Even as students, they were well known and performed extensively throughout India and in their home country of Nepal. After graduating, their musical careers continued to soar. Working around their concert schedules,
they taught in the Music Department at Kathmandu’s Tribhuvan University.
In 2011, the couple obtained visas through the Diversity Immigrant Visa lottery
program and, with their five-year-old daughter, moved to the United States.
After landing in Baltimore they made their way to Texas where they performed at a festival in
“Before starting Leadership my automatic thought regarding anything was – I can’t do it. Now I no longer have that feeling and my first thought is usually – How can I do it? – because I know I probably can.”
Prem Sagar and Hari Maya Khatiwada with their children
Tabla player Prem Sagar and singer Hari Maya Khatiwada are renowned musicians. They met in Varanasi, India when both were attending graduate school. Even as students, they were well known and performed extensively throughout India and in their home country of Nepal. After graduating, their musical careers continued to soar. Working around their concert schedules, they taught in the Music Department at Kathmandu’s Tribhuvan University.
In 2011, the couple obtained visas through the Diversity Immigrant Visa lottery program and, with their five-year-old daughter, moved to the United States. After landing in Baltimore they made their way to Texas where they performed at a festival in Houston. When they were in Houston the Khatiwada’swere enticed with promises of free room and board if they would come to work outside of Boston. The family relocated and were given a place to live. However, the time they spent working was considered “training” and for months they were not paid.
It was an awful and isolating time for the family. “We were always scared,” recalled Hari Maya. Their situation was compounded by the arrival of their son, who was born nearly four months premature and weighed just over 1.5 pounds. The hospital where
It is with profound sense of gratitude that we dedicate this issue to Julia Freeman-Woolpert. After more than three decades of service and advocacy on behalf of individuals with disabilities and their families, Julia is retiring as Outreach Advocacy Director for DRC-NH. Among her many responsibilities, Julia has played a pivotal role in the planning and production of the NH RAP Sheet. She has been the author for many of the personal stories that put a human face on the issues confronting people with disabilities. We are incredibly grateful for her insight and compassion.
While Julia will no longer be keeping office hours, her commitment to social justice is unwavering and her ties to New Hampshire’s disability and immigrant communities are unbreakable. Whenever there’s a need for advocacy, you can bet she will be there. We wish her an amazing next chapter.
AT for Education provides assistive technology and accessibility services for students and adults in the education environment as well as at the workplace.
Crotched Mountain ATECH Services
Specialized clinical program providing evaluation and AT consultation services.
ATinNH
Provides AT training, education, and outreach and AT services, including equipment demonstrations, loans, and refurbishing and reuse. ATinNH is a program of the UNH Institute on Disability.
National AT Resources
AbleData – Your Source for Assistive Technology Information
AbleData a comprehensive, annotated AT library of over 36,000 product listings. The site includes listing of resources and links to national and international sites
CAST
Expanding learning opportunities for all individuals, especially those with disabilities, through Universal Design for Learning.
Adaptive Environments
Advances the role of design in expanding opportunity and enhancing experience for people of all ages and abilities. This international organization balances expertise in legally required accessibility with best practices in universal design.
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[title] => Training & Events
[subtitle] => Institute on Disability/UCED
[content] =>
Growth Mindset for Educators
Many educators face significant and continuous pressure to support all students to achieve to their greatest potential. The Growth Mindset, as introduced by Columbia University’s Carol Dweck, provides a sound sense of direction, personal and professional control, and focus for the classroom teacher to support all students to achieve to their greatest potential. This day long workshop introduces the theoretical framework of the Growth Mindset and provides opportunity for educators to apply its functions in their personal and professional work.
Date
July 19, 2018
Time
8:30 am – 3:30 pm
Location
Plymouth State University, 17 High Street, Plymouth, NH
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
For the life of the RAP Sheet, Susan Covert provided the thread that tied together every word, article, and theme. From coming up with catchy titles and reaching out for content and photos, to expert editing and making sure the articles were accessible and engaging for everyone, Susan ensured that people with disabilities, their families, and the organizations providing support were up-to-date with the information that most mattered to living a life where everyone is welcomed and well supported in their community. We sincerely thank Susan for her efforts, and for challenging members of the IOD, DRC-NH, and DDC to create a publication of which we can all be proud. While Susan may be retiring from this role, we know she will continue her work making the world a better place for all people.
