Where Is The Help For Virginians With Disabilities?

Governor Glenn Youngkin of Virginia aims to eliminate the highest priority backlog by the end of his term and make a significant impact this fiscal year. Youngkin’s objectives, in the opinion of at least one Senate Democrat, are feasible.

There are 14,433 people on the waiting list for a Medicaid Waiver in Virginia, according to the Virginia Department of Behavioral Health and Developmental Services. More than 3,000 of them fall under priority one, which indicates they are projected to require assistance within a year or less.

Youngkin proposes funding 500 more DD waiver slots as part of a larger strategy to reform Virginia’s behavioral health system. This is in addition to the 600 more slots granted by the General Assembly in the fiscal year 2024 budget.

As of 2021, there were 656,000 people nationwide on waiting lists for Medicaid waivers. Thirty-seven states have waiting lists. In 2021, the majority of states (28) with waiting lists checked individuals for waiver eligibility under at least one waiver, but even among those states, seven did not screen for all waivers. Nine states do not screen for eligibility for any waivers, accounting for more than half of all people on waiting lists.

Haley Smith, who is 22, recently became eligible for a waiver, according to her mother, Lisa. Smith stated that they signed up 14 years ago and spent three to four years on the priority one waitlist. Caring for Haley is a full-time job, but before the waiver, her parents were only paid for four hours of care each day each day.

The position only pays $12.70 an hour and provides no benefits, which makes finding staff difficult. This is a challenge in healthcare throughout the state of Virginia. According to the US Department of Health and Human Services, around 18% of Virginia hospitals were “critically understaffed.” in July 2022.

Haley has Dravet Syndrome. Dravet syndrome is one of the most severe early childhood epilepsy disorders, with a significant morbidity and fatality rate. The typical presentation is characterized by hemiclonic or generalized clonic seizures precipitated by fever during the first year of life, followed by myoclonic, absence, focal, and generalized tonic-clonic seizures. Status epilepticus without convulsions and epileptic encephalopathy are both prevalent.

Additionally, the majority of individuals exhibit hypotonia around the age of one year. Ataxia is identified when a child begins to walk, dysautonomia is a variation in perspiration or heat, and pyramidal symptoms have a different frequency and variance.

Typically, there is no sign of developmental delay until the start of seizure activity. Still, soon after the first seizure, neuro-developmental delay indicators such as unsteady gait, language delay in sentence construction, and loss in fine motor abilities begin and progress.

Behavioral challenges are also common. Common challenges can include ADHD and autism. Many people with Dravet Syndrome have interpersonal difficulties and other challenges, including irritability and aggression.

Medicaid must be expanded to accommodate all Americans in need. Without Medicaid, the lives of millions could be turned upside down. It needs to be expanded because care can’t wait. Medicaid coverage can mean the difference between life and death. Millions of Americans, including me, depend on Medicaid’s services.


Anwar A, Saleem S, Patel UK, Arumaithurai K, Malik P. Dravet Syndrome: An Overview. Cureus. 2019;11(6):e5006. Published 2019 Jun 26. doi:10.7759/cureus.5006

Burns, Alice, et al. “A Look at Waiting Lists for Home and Community-Based Services From 2016 to 2021.” KFF, 28 Nov. 2022, http://www.kff.org/medicaid/issue-brief/a-look-at-waiting-lists-for-home-and-community-based-services-from-2016-to-2021.

Connolly, Mary B. “Dravet Syndrome: Diagnosis and Long-Term Course.” Canadian Journal of Neurological Sciences / Journal Canadien Des Sciences Neurologiques, vol. 43, no. S3, 2016, pp. S3–S8., doi:10.1017/cjn.2016.243.

DeFusco, Jackie. “Youngkin Vows to Shrink Wait List for Developmental Disability Services.” WRIC ABC 8News, 29 Dec. 2022, http://www.wric.com/news/virginia-news/youngkin-vows-to-shrink-wait-list-for-developmental-disability-services.

Holmes, Elizabeth. “Study: Healthcare Worker Shortage Second Highest Concern for Virginians after Crime, Violence.” CBS 6 News Richmond WTVR, The E. W. Scripps Company, 27 July 2022, https://www.wtvr.com/news/local-news/virginia-healthcare-shortage-public-health-concern-july-27-2022.

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