The HCBS Funding Crisis in America

CW: Institutionalization

Victoria McMullen and her husband drove from St. Louis to Sikeston over 40 years ago to adopt Ron. Fron was a six-year-old child with severe disabilities. Ron, now 44, was born with cerebral palsy, autism, and intellectual disabilities.

He is unable to live independently. Therefore, his parents have relied on state funding for the last 23 years. The funding allows the McMullens to help pay for in-home caregivers who help provide the care their son requires.

The Self-Directed Supports program allows McMullen to hire, train, and manage the employees herself, tailoring support to Ron’s specific needs. Caretakers, many of whom are local university students, work with Ron 13 hours a day, assisting him with toileting, physical therapy, bathing, and dressing, cooking. McMullen would be unable to care for him without that funding, especially after a back injury rendered her unable to physically support or help lift him.

McMullen wrote to state lawmakers this year, pushing them to increase funding for direct care workers who support people with developmental disabilities. She was happy when the legislature approved in May to enhance caregiver pay rates. But the good news quickly turned bad.

The Missouri Department of Mental Health announced in July that the program Ron and 3,030 other people rely on may be exempt from the rate increase.

Advocates also say it’s not necessarily true that home healthcare agencies need higher rates to cover overhead costs. Families say because they can’t provide employees benefits under self-directed services, but agencies can, they need to pay a higher wage to make up for it.

Advocates say a rate study should be conducted before any financial changes are made, so that if a change is required, the state may use data to determine how best to compute the Self-Directed Supports rate moving forward.

Last year, the state conducted a rate study to identify typical salaries for workers offering home and community-based health care – but the survey did not include self-directed waiver programs.

Some proponents believe that self-directed services save the state money because family members do the administrative work for free and it keeps some people from needing more expensive institutionalized care.

Larry Opinsky, a disability advocate and steering committee member of a self-directed supports advocacy group comprised of over 700 Missouri families, has been outspoken in his opposition to the state’s initiatives. Lilly, Opinsky’s 24-year-old daughter, has Rett syndrome and is nonverbal and unable to walk.

Rett syndrome (RS) is a severe neurodevelopmental disorder that has a primarily affects The majority of cases are caused by MECP2 mutations, although a subset of atypical instances may be caused by CDKL5 mutations, particularly the early onset seizure variant.

Symptoms of Rett syndrome include loss of acquired speech and motor skills, repetitive hand gestures, breathing irregularities, and seizures. Patients may also experience sporadic gastrointestinal issues, hypoplasia, early-onset osteoporosis, bruxism, ( involuntary, unconscious, and excessive grinding of teeth.)

Opinsky said his family has been using self-directed services for around 12 years, attracting caregivers from local universities in particular. The carers’ ability to work around their schedules, make direct arrangements with the family, and get to know them well “gives them a better opportunity to connect with [Lilly] and create a deeper caregiving bond.” According to Opinsky, home health agencies are frequently understaffed, thus they would be unlikely to respond.

Advocates nationwide have suggested that waiting lists be eliminated. For decades, the system has been underfunded. Across the country, there are 820,000 disabled persons on waiting lists for home and community-based services. In states like Florida, the waitlist is more than a decade long. In October 2022 18-year-old JJ Holmes had been on the waitlist since age two, and he was still waiting for services.

Medicaid’s home and community-based services allow people with disabilities to live at home instead of in an institutional setting. Disabled people should be able to live in the community. Without Medicaid’s services, people are frequently forced into dangerous situations, which can have devastating consequences.


Bates, Clara. “Missouri Advocates Decry Proposed Change to At-Home Disability Care Funding Missouri Independent.” Missouri Independent, States Newsroom , 31 Aug. 2023,

Griffin, Nicole. “Thousands of Disabled Floridians Spending Years on Medicaid Waiver Waitlist.” Spectrum News 13, Spectrum News, 31 Oct. 2022,

L S Weaving, et al. ‘Rett Syndrome: Clinical Review and Genetic Update’. Journal of Medical Genetics, vol. 42, no. 1, Jan. 2005, p. 1, https://doi.org10.1136/jmg.2004.027730.

Lal SJ, Weber, DDS KK. Bruxism Management. [Updated 2022 Oct 12]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from:

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