Our Executive Director Visits the White House for Communities in Action

Communities in Action: Building a Better America

Last week, our Executive Director, Stephanie Patrick, joined other leaders from New Hampshire, Maine, and Vermont on a visit to Washington, D.C., as part of the White House’s Communities in Action series.

Communities in Action is a series of events that brings local elected officials and community leaders to the White House to highlight the investments of the Biden-Harris Administration and their impacts in communities throughout the country.

Stephanie’s remarks centered around our office’s efforts to increase access to the COVID-19 vaccine and our work to pass and implement supported decision-making in New Hampshire.

Stephanie’s Prepared Remarks

Date: March 14, 2024

Thank you for this opportunity to come together with such powerful advocates and to share these stories about our work. I am here as the Executive Director of Disability Rights Center – NH, the protection and advocacy organization for New Hampshire. We provide free and low-cost legal advocacy for people with disabilities through individual representation, systemic litigaton, public policy advocacy, education and training and advocacy via coalitions and partnerships. We serve people with all types of disabilities across New Hampshire.

We are appreciative of the American Rescue Plan Act (ARPA) funds which allowed us to devote significant time to ensure vaccines were available to people with disabilities. COVID was a public health crisis and, as with any crisis, people came together to help however they could, doing jobs that they don’t usually do, and doing them as fast as they could. Like every other state, New Hampshire developed a plan to roll out limited COVID-19 vaccines in less than 6 months and one of our major roles in the dissemination of COVID vaccine was to remind State officials about the importance of:

• Prioritization of people with disabilities in the vaccine access process.
• Accessibility of vaccine sites including a plan for ASL interpreters, physical accessibility, and a process for people who could not wait in line.
• Accessibility of information including flyers that were able to be read by screen readers and websites that were accessible.
• Access to vaccines for people who are homebound and could not go to a vaccine site. These individuals often have many people in and out of their homes and are at high risk due to medical issues.
• Access to vaccines for people in the state psychiatric hospital, especially important for people who were there for short-term stays and were in the middle of their initial series of vaccines.

ARPA funding allowed us to focus on this advocacy to make sure all people with disabilities could access this critical vaccine. While the COVID vaccine access crisis seems to have passed, work to ensure physical and programmatic accessibility is stll very important. Accessibility is easiest when it is considered during planning or at the start of a crisis so we need people who can focus solely on that to make sure people with disabilities are not left behind.

The second topic that I want to discuss is alternatives to guardianship. We all watched the news about Britney Spears and Michael Oher as they sought their freedom from a guardianship/conservatorship. Unless you are involved in disability rights, you may not realize that guardianship is the fundamental loss of rights for the person with disabilities.

In the past, we ofen spoke to judges who felt there was no real alternative to guardianship, but now, a viable alternative called supported decision-making is available. NH passed legislation to create supported decision-making as a legal alternative to guardianship in 2021, but further advocacy is needed to make sure that people with disabilities retain their legal right to make their own decisions, which may or may not be the decision that someone else agrees with.

Independence is contagious. The more you have, the more you want and the more you can do. As people without disabilities, we don’t appreciate the freedoms that we have to make decisions about our day-to-day lives, big and small.

One example of this need is the story of Jonathan. As his 18th birthday approached, he was excited for his independence. His parents, like the parents of all children turning 18 – I remember how nervous my parents were – were nervous. His community services provider suggested guardianship, just like they do for everyone.

Jonathan called us for help and asked us to talk to him and his parents about supported decision-making. With the support of a DRC-NH attorney, they were able to put together a supported decision-making agreement and he is doing well. But, this is the exception and not the rule, even in NH where we have supported decision-making as a legal alternative. We need national action on this issue to really start to shift this understanding.

Thank you for supporting our work and the opportunity to highlight these issues.