Danté Herrera is only 15, and he’s spent a decade waiting to receive a Medicaid waiver.
The Virginia Beach teen, who has a rare brain disorder, is one of 11,000 disabled Virginians on the waiting list for the funding that allows disabled people to live in their own neighborhoods rather than in institutions – a list that some now worry will grow even longer.
For years, Virginia politicians have debated whether to expand Medicaid, the state-federal health insurance for people who have low incomes or are disabled, under a provision of the Affordable Care Act.
That expansion has never happened.
But now that President Trump’s administration is proposing fundamental changes to Medicaid, the talking points have swiveled to this: How do you scale back a health program that for decades has split the costs evenly between the state and federal government?
The Congressional Budget Office estimates that the House-passed American Health Care Act, designed to replace the ACA, will cut the Medicaid program by $834 billion over 10 years. The bill would give states a fixed amount of money based on what they’ve been spending.
The idea is to give states more flexibility to come up with innovative ways to address the needs of the Medicaid population. However, Virginia health officials expect a shortfall.
Craig Markva, a spokesman for the Virginia Department of Medical Assistance Services, said state health officials have done some initial number-crunching and project a shortfall of $708 million from 2020 through 2026 if the bill passes.
That would leave the state with some tough options:
- Scale back who is eligible for Medicaid, even though Virginia already has some of the most stringent requirements in the country.
- Reduce services.
- Cut reimbursement rates paid to providers and health plans.
- Shift state funds from other programs to make up for lost federal money.
Markva said the greatest shortfall is expected in categories of the aged and the disabled, because those services are the most costly. That would also likely reduce the number of disability waiver slots available.
It’s an equation deeply troubling to the population of people with disabilities and their families and advocates because the state is already behind in meeting their needs, even though the commonwealth is under a U.S. Department of Justice order to serve people in communities rather than state institutions.
For Marlo Dean, it means more uncertainty about the long-term care of her son, Danté, who has Batten disease – a progressive neurological disorder – and needs help with bathing, eating, getting around and communicating with others.
He qualifies for Medicaid that covers his medical expenses, and he also has an “Elderly or Disabled with Consumer Direction” waiver. But it’s the more-comprehensive waiver for the intellectually and developmentally disabled that would cover his living expenses in the community, even when his mother can no longer care for him.
“People think Medicaid is for people sponging off the system, but it’s for people trying to survive,” Dean said.
Who is on Medicaid
Virginia’s Medicaid program serves about 1.3 million people. The largest number of recipients are children in low-income families, who numbered 642,391 in fiscal year 2016, or 49 percent of the total. However, that population accounts for only 20 percent of Medicaid expenditures.
The disabled receive 49 percent of the state’s Medicaid dollars, even though they represent just 17 percent of the enrollment. That’s because their needs are more complex, often requiring around-the-clock assistance.
Another category, the elderly, makes up 19 percent of expenditures, while representing only 6 percent of enrollees. John Skirven, CEO of Senior Services of Southeastern Virginia, said changing the Medicaid model from the current system to one that allots a fixed amount to states would eventually leave Virginia shortchanged.
The senior population is growing, and older people are more likely to need nursing home care, which can easily cost more than $80,000 a year.
“It’s very easy to exhaust your savings in long-term care,” Skirven said.
That’s when Medicaid steps in. In Virginia, two of three people in nursing homes are supported by the program, according to state statistics.
Many older people also use Medicaid dollars for services to stay in their own homes, which is less expensive and often preferable. For instance, the Programs of All-Inclusive Care for the Elderly uses Medicaid and Medicare dollars for people who qualify for nursing home care but want to stay in a family home.
The dollars provide medical care and support services to allow them to do that.
The other category of people covered by Medicaid is low-income parents, caregivers and pregnant women, who make up 28 percent of enrollees and 12 percent of expenditures. One in three births in Virginia are covered by Medicaid.
Home- and community-based care growing
A category that has grown in recent years is home- and community-based waivers, which support more than 46,700 Virginians.
Years ago, people with disabilities were often sent to state training centers or state hospitals for care. But families wanted to keep their relatives at home, and adults with disabilities fought to live in communities rather than in institutions. In 1991, Virginia formed a Medicaid waiver program to shift dollars from long-term care facilities to community settings.
In 2011, the Department of Justice filed suit against Virginia, saying the state needed to provide more community-based care for people with disabilities. That agreement funneled more money into Medicaid waivers, but changing the Medicaid formula could work against those gains, according to Jamie Liban, executive director of The Arc of Virginia, which advocates for the disabled.
Liban said a fixed amount of money, using a block grant or per capita formula, will hurt Virginia, which has traditionally been fiscally conservative about funding for the disabled: “It’s going to fall on the state to implement cuts, leaving the feds off the hook.”
Dorothy Clark, 53, has been advocating against the Medicaid change as well and brings a personal perspective: She has an intellectual disability and cerebral palsy, and she received a Medicaid waiver in 2001.
She now lives in a Virginia Beach apartment. The Hope House Foundation, which helps people with disabilities live independently, provides transportation to the places she wants to go, such as London Bridge Baptist Church, and art classes, and also gives her a hand in preparing meals and taking care of her apartment.
She’s told legislators about the value of the Medicaid waiver: “It’s helped me stay involved with my church, and to do things I choose to do.”