Where We Belong: Community Living And People With Disabilities

The North Carolina Department of Health and Human Services (NCDHHS) is appealing a court ruling that would bring the state agency into line with state law and provide individuals with intellectual and developmental disabilities with choices in their care.

According to a court order issued earlier this month, DHHS has been “over-reliant” on institutionalizing people with disabilities and is in “ongoing violation” of the North Carolina Persons with Disabilities Protection Act. A superior court judge believes there should be enough community-based alternatives for persons who do not wish to be in a state facility.

In 1999, the Supreme Court ruled that services for those with disabilities must be provided “in the most integrated setting possible.” The Supreme Court heard this case after two women with disabilities from Georgia wanted to leave the nursing homes where they lived. The State of Georgia denied their request. Lois Curtis and Elaine Wilson wished to live in their communities.

Disability Rights North Carolina, a non-profit organization, filed a lawsuit against DHHS and won. There are currently more than 16,000 North Carolina residents on a waiting list for home and community-based services. These services are provided by Medicaid and allow people to live in their communities with support.

The Department of Health and Human Services is urging the General Assembly to provide funding to help the thousands of people on the waiting list. Nationwide, there are millions of people on waiting lists for services. In Florida, for example, there are 22,488 people with disabilities waiting for a Medicaid waiver. People are often on the waiting list for more than a decade. 18-year-old JJ Holmes, who has Cerebral Palsy, has been on the waiting since the age of two.

Medicaid is essential for people who want to live in their communities. Massachusetts Medicaid pays for my PCA hours. My PCA assists me with activities of daily living, such as bathing, toileting, and getting dressed. He also takes me to physical therapy appointments, doctor’s appointments, and the grocery store.

The annual cost of my care is more than $50,000. I couldn’t afford to pay for PCA services out of pocket. However, it would cost the state of Massachusetts much more if I were in a nursing home. Without Medicaid, life as I know it would be gone in an instant. Everyone should be able to live in their community.


Athans, Elaina. “Judge Rules NC DHHS Is Violating Rights of People with Intellectual, Developmental Disabilities.” ABC11 Raleigh-Durham, The Walt Disney Company, 30 Nov. 2022, https://abc11.com/nc-dhhs-violation-persons-with-disabilities-act/12511533/.

Griffin, Nicole. “Thousands of Disabled Floridians Spending Years on Medicaid Waiver Waitlist.” Spectrum News 13, Spectrum News, 31 Oct. 2022, https://www.mynews13.com/fl/orlando/news/2022/10/31/thousands-of-disabled-floridians-waiting-years-to-get-off-wait-list-for-help.

“How Two Women Changed Thousands of Lives.” Disability Rights Texas, Disability Rights Texas, 17 June 2019, http://www.disabilityrightstx.org/en/2019/06/17/olmstead20th/.

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