Where Will People with Intellectual and Developmental Disabilities Live?

CW: Institulization

Shawn E. Latham is 43 and lives in Lacey, WA. He is a graduate of Central Washington University and the executive director of Allies in Advocacy, an advocacy organization dedicated to helping disabled people.

Latham has an undiagnosed developmental disability. At birth, it was suggested that he live in an institution. He lives with his mother and hires direct support staff from Carina Care.

More than 170,000 Washingtonians live with intellectual and developmental disabilities. Intellectual and developmental disabilities include spina bifida, autism, fetal alcohol syndrome, and cerebral palsy. IDDs are conditions that are usually present at birth and have a significant impact on the individual’s physical, intellectual, or emotional development. Many of these conditions impact multiple organ systems or body parts.

Family caregivers are integral in allowing people to participate in their communities. Currently, 77% of Washingtonians with intellectual and developmental disabilities live at home with their parents. Almost 2,300 people reside with a parent who is older than 60. Many parents will care for their children with intellectual and developmental disabilities until they are in their 70s, 80s, or 90s.

It is the same throughout much of the U.S. About 7.4 million individuals with intellectual and developmental disabilities live in the U.S. However, only about 20% of them receive services from a state agency, according to a 2017 report from the U.S. Department of Health and Human Services.

Washington ranked 37th in the nation in terms of spending on services for people with IDD. Over three-quarters of the population receives no services. The overwhelming of those that do are white. Since the 1980s, there has been no major investment in housing for people with IDD.

Others who need services are stuck on waiting lists for years or even decades. Nationwide, there are 820,000 disabled people on waiting lists for home and community-based services. 40% of them are under the age of 65.

I am one of the millions of Americans who utilize Medicaid’s home and community-based services. Medicaid pays for my PCAs, who assist me with activities of daily living such as toileting, bathing, and dressing. Medicaid allows me to live in an apartment rather than a nursing home or other long-term care facility. At 23, I wouldn’t want to live in a nursing home.

Disabled people deserve to live in their communities regardless of age or disability. It doesn’t matter whether a person is a child or an adult. A five-year-old and a fifty-year-old both have the right to live in their community alongside family, friends, colleagues, and neighbors.


“About Intellectual and Developmental Disabilities (IDDs).” Eunice Kennedy Shriver National Institute of Child Health and Human Development, U.S. Department of Health and Human Services, https://www.nichd.nih.gov/health/topics/idds/conditioninfo.

Conrad, Jordan A. ‘On Intellectual and Developmental Disabilities in the United States: A Historical Perspective’. Journal of Intellectual Disabilities, vol. 24, no. 1, SAGE Publications Ltd, Mar. 2020, pp. 85–101, https://doi.org10.1177/1744629518767001.

Diament, Michelle. “Community-Based Services Should Be Mandatory Medicaid Offering, Federal Agency Says.” Disability Scoop, Disability Scoop, 12 Dec. 2022, https://www.disabilityscoop.com/2022/12/13/community-based-services-should-be-mandatory-medicaid-offering-federal-agency-says/30172/.

Latham, Shawn E. “Invest in Housing for Those with Developmental Disabilities.” The Seattle Times , The Seattle Times Company, 24 Mar. 2023, https://www-seattletimes-com.cdn.ampproject.org/c/s/www.seattletimes.com/opinion/invest-in-housing-for-those-with-developmental-disabilities/?amp=1.

Schalock, Robert L., et al. Intellectual disability: Definition, classification, and systems of supports. American Association on Intellectual and Developmental Disabilities. 444 North Capitol Street NW Suite 846, Washington, DC 20001, 2010.

Silverman, Amy. “Million-Dollar Question: How to Find Safe Homes for Those with Complex Needs.” Center for Public Integrity, Center for Public Integrity, 19 Dec. 2022, https://publicintegrity.org/health/institution-of-one/find-safe-homes-people-with-disabilities/.

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