Yesterday, I was able to attend a screening of UNMET: North Carolina’s Two Developmental Disability Crises. The film highlights the critical lack of services throughout NC.
North Carolina, like many other states, has a waiting list for home and community-based services waivers. There are 16,439 people in North Carolina on the Registry of Unmet Needs, the waiting list for the Innovations Waiver. There are more than 14,000 waivers avalible. The waiver slots are filled after a five to ten-year wait. However, slots become available county by county, with some areas anticipating wait periods of more than a decade.
Marjorie Serralles-Russell’s son Spencer aged out of public school in June. He has been on the Registry of Unmet Needs, for years. Serralles-Russell recently discovered that waiver slots are being filled in their county. Unfortunately, the slots that are being filled are from 2012.
Matt Potter is 36 years old. He has Cerebral Palsy. He uses a power wheelchair. His parents are his primary caregivers. They help him with activities of daily living, such as bathing and dressing.
Potter faces a problem millions of disabled Americans are all too familiar with. He has difficulty finding home healthcare workers to assist him every day.
Potter worries about what his life will look like as his parents’ age. They could become ill at any time. For their son, this could result in institutionalization, which he opposes. Potter says an institution “is about the least appropriate place possible for me.”
Roan Moffitt Fields, the son of Desirée Moffitt and Jacob Fields, was born in 2012 with autism and Fragile X Syndrome. Individuals with Fragile X syndrome experience severe behavioral issues such as hyperactivity, impulsivity, and anxiety. They may also experience speech delays and seizures.
Roan was placed on a waiting list for North Carolina’s Innovations waiver. At the time, he was three years old. When a spot opened up, his parents found that the services were inadequate. Roan spent time in a hospital where his parents say he was abused.
These waivers can provide a range of services. Examples of covered services under a Medicaid waiver include hospice care, adult day health services, home healthcare, and home-delivered meals. Millions of America’s most vulnerable residents rely on these services to remain in their communities.
There is a significant lack of home healthcare providers in the United States, which affects the elderly and disabled. As more people require care due to disabilities, illnesses, or aging, the shortage will worsen.
Bryan Dooley, who lives in Winston Salem, NC sees the impacts of this crisis both professionally and personally. Dooley is on the board of the North Carolina Council on Developmental Disabilities and works for Solutions For Independence.
He also has Cerebral Palsy. Dooley worked with his direct support professional, Dave Owen for over six years. Owen helped Dooley with his activities of daily living, drove him to work, and acted as a translator when necessary. Recently, Owen noticed that Bojangles, a fast food restaurant was offering starting wages slightly higher than what he made.
Home and community-based services are essential for people who want to live in their communities. Like Bryan, I also have CP. 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.
Medicaid eligibility should be expanded, and waiting lists should be eliminated. People are often forced into dangerous situations without Medicaid, which can have catastrophic consequences. All disabled people should be able to get the help they need to live their lives to the fullest.
Donnelly-DeRoven, Clarissa. “Low Pay, No Space for Advancement: Why the Workers Who Support People with Disabilities Are Leaving.” North Carolina Health News, North Carolina Health News, 13 Feb. 2023, https://www.northcarolinahealthnews.org/2023/02/13/low-pay-no-space-for-advancement-why-the-workers-who-support-people-with-disabilities-are-leaving-the-field/.
Jones, Mary Helen. “The Personal Impact of a Statewide Shortage.” Spectrumlocalnews.com, Charter Communications, 23 Jan. 2023, https://spectrumlocalnews.com/nc/charlotte/politics/2023/01/23/the-personal-impact-of-a-statewide-shortage.
“Registry of Unmet Needs.” Partners Health Management, Partners Health Management, 6 Mar. 2023, https://www.partnersbhm.org/registry-of-unmet-needs/.