Waiting

CW: Institulization

Sarah Potter’s 38-year-old son Matt has cerebral palsy. Matt has been on the Registry of Unmet Needs in North Carolina for 15 years. Once he is off the waitlist, Matt will receive an Innovations waiver that will give him access to a variety of home- and community-based services through Medicaid. 

Medicaid waivers are intended to provide services and support to people with intellectual and developmental disabilities (IDD), allowing them to live and participate in their communities rather than being forced into institutions. 

Potter is not alone. For years now, nearly 700,000 people nationwide have been on waiting lists for Medicaid’s home and community-based services. Home and community-based services include physical, occupational, and speech therapies, durable medical equipment, home healthcare, home-delivered meals, and dietary management.

Matt briefly experienced a sense of independence eight years ago. An accessible cab picked him up and he went to the library. Sadly, the funding for this service which was provided by his managed care organization, only lasted a month. 

Like Potter, I also have cerebral palsy. In my case, Massachusetts Medicaid provides the funding for my PCAs (Personal Care Assistants). My PCA helps me with activities of daily living, including bathing, dressing, and toileting. Without Medicaid, I wouldn’t be able to pay for PCA services, which cost more than $50,000 annually. 

I don’t want to be forced to live in a nursing home or any other residential facility. I want to have a say in where I live. No nondisabled 25-year-old wants to live in a nursing home. Why should someone with a disability be any different?

It would cost much more for me to live in a nursing home. Living at home saves the state of Massachusetts thousands of dollars a year. The Center for Medicare and Medicaid Services estimates that home and community-based services cost 50% less than institutional care.  In 2020,  KFF, which was formerly known as the Kaiser Family Foundation, found that the average annual cost per person for home and community-based services averaged slightly more than $36,000, whereas institutional costs averaged more than $47,000. 

Going into a nursing home or institution would be devastating to me. I would have very little autonomy. I wouldn’t be able to choose my own meals, see my friends and family whenever I wanted, or watch TV late at night. 

I probably wouldn’t have the opportunity to eat at restaurants, grocery shop, or see a movie. I couldn’t leave whenever I wanted to. I would feel trapped. 

Home and community-based services allow disabled people to live at home or in the community rather than in an institutional setting. Without home and community based services, life for millions of people would change instantly. Without adequate funding, people’s lives are at risk which could have tragic consequences.

Sources:

Chidambaram, Priya, and Alice Burns. “How Many People Use Medicaid Long-Term Services and Supports and How Much Does Medicaid Spend on Those People?” KFF, KFF, 14 Dec. 2023, http://www.kff.org/medicaid/issue-brief/how-many-people-use-medicaid-long-term-services-and-supports-and-how-much-does-medicaid-spend-on-those-people/. 

Diament, Michelle. “House Vote Tees up Billions in Cuts to Medicaid, Disability Services.” Disability Scoop, Disability Scoop, 27 Feb. 2025, www.disabilityscoop.com/2025/02/27/house-vote-tees-up-billions-in-cuts-to-medicaid-disability-services/31321/. 

“Home- and Community-Based Services.” Centers for Medicare and Medicaid Services, The United States Department of Health and Human Services , 13 Jan. 2025, http://www.cms.gov/training-education/partner-outreach-resources/american-indian-alaska-native/ltss-ta-center/information/ltss-models/home-and-community-based-services. 

Heasley, Shaun. “Billions Are Spent on IDD Services Annually. Where Does It All Go?” Disability Scoop, Disability Scoop, 16 July 2024, http://www.disabilityscoop.com/2024/07/16/billions-are-spent-on-idd-services-annually-where-does-it-all-go/30967/.

Potter, Sarah. “Opinion: My Nc Son Has Cerebral Palsy. He’s Waited 15 Years for Care from an Underfunded Medicaid Program.” Cardinal & Pine, COURIER, 9 Apr. 2025, cardinalpine.com/opinion/opinion-my-nc-son-has-cerebral-palsy-hes-waited-15-years-for-care-from-an-underfunded-medicaid-program/.