During his State of the Union address on Tuesday, President Biden urged Congress to invest heavily in home and community-based services nationwide.
Biden advocated investing $400 billion in Medicaid home and community-based services in 2021 to improve access to people on waiting lists and bolster the workforce of direct support professionals.
If passed, the Better Care Better Jobs Act will provide states with a permanent 10% increase in federal Medicaid matching funds for home and community-based services if they meet specific criteria, such as requiring personal care services coverage, providing greater support for family caregivers, improving access to behavioral health treatment, and better coordination of housing, transportation, and employment supports.
The bill. also includes a provision requiring periodic wage increases for home and community-based service providers. Staffing for direct care positions is problematic due to low wages.
Advocates nationwide have suggested that waiting lists be eliminated. For decades, the system has been underfunded. In Florida, 18-year-old JJ Holmes has been on the waiting list since he was two. Across the country, there are 820,000 disabled persons on waiting lists for home and community-based services, but demand for such programs might be far greater.
Desirée Moffitt and Jacob Fields’ son was Roan, born in 2012, with autism and Fragile X Syndrome. Fragile X syndrome is the most common genetic form of intellectual disability and autism spectrum disorder, with individuals exhibiting severe behavioral changes such as hyperactivity, impulsivity, and anxiety, as well as impaired language development and seizures.
They placed Roan on a waiting list for North Carolina’s Innovations waiver at the age of three. It has been more than a decade. In North Carolina, there are more than 14,000 waivers available. Unfortunately, more than 16,000 residents are on the waiting list.
For people like me, Medicaid is a lifeline. Millions of people in the United States, including myself, rely on Medicaid-funded home and community-based services. My PCA assists me with everyday tasks such as toileting, showering, and clothing. I could have to live in a long-term care facility if I didn’t have my PCA. In other words, if Medicaid didn’t exist, life as I know it would vanish.
Medicaid must be expanded, and waiting lists must be eliminated. Without Medicaid, people are routinely forced into dangerous situations, which can have devastating consequences.
Diament, Michelle. “Lawmakers Revive Effort to Prop up Disability Services.” Disability Scoop, Disability Scoop, 27 Jan. 2023, https://www.disabilityscoop.com/2023/01/27/lawmakers-revive-effort-to-prop-up-disability-services/30214/.
Diament, Michelle. “Community-Based Services Should Be Mandatory Medicaid Offering, Federal Agency Says.” Disability Scoop, Disability Scoop, 12 Dec. 2022, https://www.disabilityscoop.com/2022/12/13/community-based-services-should-be-mandatory-medicaid-offering-federal-agency-says/30172/.
Diament, Michelle. “Biden Renews Calls to Invest in Services for People with Disabilities.” Disability Scoop, Disability Scoop, 9 Feb. 2023, https://www.disabilityscoop.com/2023/02/09/biden-renews-calls-to-invest-in-services-for-people-with-disabilities/30235/.
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.
Hagerman, Randi J et al. “Fragile X syndrome.” Nature reviews. Disease primers vol. 3 17065. 29 Sep. 2017, doi:10.1038/nrdp.2017.65
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.