America Is Failing People with Intellectual and Developmental Disabilities

Following years of warning about the inevitable collapse of the disability services system, advocates believe the crisis is here, citing a new report that provides a grim view of the current crisis across the country.

According to a report released this week by United Cerebral Palsy, and ANCOR, programs are closing, people with developmental disabilities are being turned away, and providers are failing to meet federal regulations.

More than 481,000 people with developmental disabilities were on waiting lists for home and community-based services as of 2021. Many people are on waiting lists for a decade or longer. However, due to a lack of funding, even those taken off of waiting lists might not have access to services.

Data from a survey conducted last fall reveals that over 60% of providers have stopped offering programs in the last year. Additionally, over 80% say they have turned down disabled people from services.

Meanwhile, just 36 states participate in Money Follows the Person, down from 44 in 2016. The Medicaid program provides additional funding for employment, housing, and other services to assist persons transitioning from nursing homes and other institutions to community-based settings. According to a recent study on the program released last year by CMS, more than 107,000 persons transitioned with the help of Money Follows the Person between 2008 and 2020.

Like many industries, there is a shortage of support professionals for disabled people. Two of the main reasons for this are low wages and few, if any, benefits. Nationwide, the hourly wage for these positions is only $13.56.

The job can be challenging at times. It was found that 56% of direct support professionals reported having anxiety, 43% had sleep difficulties, and 40% experienced depression. At times, working with people with intellectual and developmental disabilities also involves hands-on care such as toileting, bathing, and transfers.

Medicaid’s home and community-based services allow disabled people to live at home rather than in an institution. Since 1999, disabled people have had the right to live in the most integrated setting possible.

Home and community-based services are vital for millions of disabled Americans. For me, the shortage of PCAs in Massachusetts meant that I had three PCAs in three semesters of college. The lack of PCAs hindered my experience in college. Often, my PCAs didn’t show up or had car trouble.

In 2020, I moved out of my parent’s home. Without Medicaid, this wouldn’t have been possible. A longtime friend of mine is employed as my PCA which works well for me. Unfortunately, many people aren’t as fortunate as I am to have reliable care.

The system is in crisis and on the verge of collapse. Individuals with intellectual and developmental disabilities have the right to reside in their communities. Policies must be changed to ensure that people receive the help they need. All disabled people should be able to live their lives to the fullest.


Diament, Michelle. “Nation’s Disability Services at Breaking Point, Report Finds.” Disability Scoop, Disability Scoop, 2 Mar. 2023,

Diament, Michelle. “Medicaid Program Helping People Leave Institutions Headed to More States.” Disability Scoop, Disability Scoop, 25 Aug. 2022,

Shapiro, Joseph. “Lois Curtis, Who Won a Landmark Civil Rights Case for People with Disabilities, Died.” NPR, NPR, 5 Nov. 2022,

Leave a Reply

%d bloggers like this: