Are Institutions a Thing of the Past?

Consider Institutional Qualities

By Kelly Nye-Lengerman

Throughout history, people with intellectual and developmental (ID/DD) and other disabilities living in institutions may have experienced abuse, exploitation, and isolation. In order to prevent these transgressions in the future, we must continue to insist individuals living with ID/DD have choice, input, and control over their lives, including where and how they live.

Over the past 50 years, the number of individuals residing in institutions has declined dramatically because of deinstitutionalization, which is a policy process of moving individuals who live in state-run institutions into community-based settings for housing and support. Central to the movement of deinstitutionalization is the belief that people with IDD must be able to have choice and control in their lives. Deinstitutionalization resulted in the closures of hundreds of state institutions around the U.S., including New Hampshire’s own Laconia State School in 1991.

Recent deinstitutionalization efforts prioritize choice for the individual not only in where they live but with whom and how their day is structured. These efforts also consider whether people have access to their community and individualized community-based supports, adequate privacy, the ability to express preferred lifestyles, and the ability to eat, sleep, and bathe free from abuse, neglect, and harm.

Although the state-run institutions of the “old days” are considered by many to be a thing of the past, many settings and housing options for individuals with IDD have institutional-like qualities are characteristics of an environment that makes it feel like an institution.

An institutional quality in a residential setting (like intermediate care facilities, group homes, and other congregate living situations) can include:

• Lack of choice in where one lives (town, setting, distance, etc.) and with whom (family, friends, roommates, alone)
•  Lack of input or opportunity to select the paid professionals in their lives, or the provider that employs their direct support professionals
• Inadequate size or capacity of the setting
• Inflexible schedules for routines like eating, bathing, sleeping, and socializing
• Inflexible schedules based upon the needs of others that may restrict individual choices or opportunities
• Restrictions on participating in meal planning, grocery shopping, home maintenance, etc.
• Restrictions on access to the community (i.e., social groups, transportation, and curfew)
  Restrictions on certain parts of their home or access to food
• Restrictions on personal privacy or visitors
• “House rules” not agreed upon by all housemates, or not reviewed regularly
• Unsolicited input or restrictions on lifestyle choices or preferences from paid supports (i.e., friends, sexuality, spirituality, and music)

As we individually and collectively work together to build stronger housing infrastructure in our state, we must address – not ignore – institutional qualities that still exist in some housing options.

Home and community-based services (HCBS) and self-directed supports are two new frontiers for delivering quality, community-based, individualized supports, while reducing the dependence on institutional and segregated settings. HCBS services are funded through the Centers for Medicare and Medicaid (CMS). CMS provides guidance and expectations for states and provider agencies to deliver the most integrated community-based supports possible. This prioritizes community, based on individualized needs and preferences of the person. The continued growth and expansion of HBCS is a tremendous opportunity for our state. Our state’s collective and evolving efforts should continue to protect and expand individual choice and control, while avoiding institutional qualities and supporting authentic community inclusion and choice for people with IDD in New Hampshire.

Kelly Nye-Lengerman is the Director of the Institute on Disability at the University of New Hampshire.

References

Anderson, L., Hewitt, A., Pettingell, S., Lulinski, A., Taylor, M., & Reagan, J. (2018) Family and individual needs for disability supports (v.2) Community Report 2017. Minnesota: Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota.

Friedman, C. (2019). There’s no place like home: A national study of how people with intellectual and/or developmental disabilities and their families choose where to live. Washington, DC and Towson, MD: The Arc of the United States and CQL | The Council on Quality and Leadership.

Johnson, K. R., & Bagatell, N. (2017). Beyond custodial care: Mediating choice and participation for adults with intellectual disabilities. Journal of Occupational Science, 24(4), 546-560.

Larson, S.A., van der Salm, B., Pettingell, S., Sowers, M., & Anderson, L.L., (2021). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2018. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.

Lutz, A. (2017). Adults with disabilities deserve right to choose where to live. Retrieved from https://www.spectrumnews.org/opinion/viewpoint/adults-disabilities-deserve-right-choose-live/

Medicaid.gov. (ND). Institutional Long Term Care. Retrieved January 20, 2022 from: https://www.medicaid.gov/medicaid/long-term-services-supports/institutional-long-term-care/index.html#:~:text=Institutions%20are%20residential%20facilities%2C%20and,the%20individuals%20who%20are%20admitted.&text=Eligibility%20for%20Medicaid%20may%20be,for%20institutional%20level%20of%20care.