It’s been decades since Sue Utterback and her husband have had a break from caregiving.
They’re reasonably fit and financially stable, but because of this, their severely disabled son is not eligible for state-subsidized support services that cover things like respite care or shared housing.
Without financial support, respite care for a weekend would cost upward of $1,200. Even when the couple considered making the out-of-pocket payment, they couldn’t find anyone to do the job, even though their son doesn’t have any medical needs.
“It’s been 22 years. I don’t even know what to say anymore to get help,” Utterback said.
As part of Gov. Glenn Youngkin’s Right Help Right Now plan, a multiyear initiative to overhaul the behavioral health system in the commonwealth, his budget proposal for the next two years includes $300 million to expand Medicaid waivers for developmentally disabled Virginians.
Commonly called the DD waiver, the program is designed to improve access and affordability for community-based services that help recipients live independently. Community-based services covered under the waiver include home health, skilled nursing, respite care, day services and employment and transportation support. Depending on the recipient’s income, they could be required to pay for a portion of the services, but if they make less than $2,000 a month the services are covered in full by the waiver.
The governor’s proposed investment would address what’s called the priority one waitlist for people who urgently need services. It would also be the first expansion of the waiver program since it was established in 1991.
While advocates and parents supported the expansion of DD waiver slots at a public hearing for the proposed budget in January, many said it will not address the access problems for thousands of others and will put increased pressure on providers who are already struggling to meet the current demand.
There are about 3,440 people who are on the priority one waitlist, meaning their health and safety will likely be at risk in the next year without services, according to the Virginia Department of Behavioral Health and Developmental Services.
More than 14,000 others are waiting on priority two and three lists with less urgent needs.
Utterback’s son, Steven, has been assigned to the priority three list, the lowest priority there is, since he aged out of the public school system. He’s now 40 years old and his parents are entering their 70s.
“My husband and I really thought that at this stage in our lives that he would be somewhere, and that we’d be a part of that process,” she said. “I tell people, ‘You don’t get it’ because the longer he’s with us the harder it’s going to be for him to transition to something else if something happens to us.”
Their son’s cognitive ability never progressed past that of a 4-year-old. He can’t read or write and is prone to emotional challenges. He’s nonverbal except for a few short words, and he can use sign language to say “I love you.”
He’ll never be able to live independently, his mother said.
He needs around-the-clock care but has no medical needs. He would only access a few of the services offered under the DD waiver, which covers things like respite care, home health, employment support and shared residential living.
Two years ago, Utterback was diagnosed with breast cancer. She had surgery and went through radiation treatment. Her condition, however, did not merit any movement on the priority waitlist.
“If I die of cancer, then maybe we’ll get a waiver,” she said, adding that she’s now in remission.
Medicaid waivers and waitlists
Virginia ranked in the bottom third among all states for services for disabled people in the 2019 Case for Inclusion report, which is produced through a partnership between United Cerebral Palsy and the ANCOR Foundation, a Virginia organization that educates future leaders in disability services. While Virginia has made progress on this front in the last few years, it still has a long way to go.
When young couples are considering moving to Virginia to start a family, Utterback has one piece of advice for them: Pick another state.
She’s asked doctors and geneticists for years what caused her son to be born with his disability, and she’s never gotten an answer.
“I don’t smoke, I don’t drink, nothing happened during my pregnancy,” Utterback said. “I’ve had genetic testing twice and nothing has come up.”
In the U.S. about 1 in 6 children are born with a disability, according to the Centers for Disease Control and Prevention. For some developmental disabilities, the risk factors and causes are known, but for many others there’s no identifiable cause. Everyone has a 1% to 3% chance of having a developmentally disabled child, according to the CDC.
Medicaid waiver programs allow states to provide services to people with particular long-term health care needs. Funded with both state and federal dollars, waivers are meant to help people live in their communities and out of institutionalized care settings such as training centers or nursing homes.
Waivers are allocated based on urgency of need, and the waiting list is a long one, split into three groups: priority one, two and three.
Those on the priority three waitlist are the lowest priority, needing services in five years or more in order to maintain health, safety and housing, according to the state’s administrative code for waiver services.
To move a client up to priority two, a case worker would estimate that the person’s health, safety and housing would be at risk in one to five years due to the declining health of a family caregiver, or if there is no other unpaid caregiver available to provide support.
To move up to priority one, the person’s health, safety and housing would need to be in immediate jeopardy within one year.
Once someone is approved for a waiver, they have 30 days to access services. That can be extended to 150 days, but if they don’t access services in that time they lose the waiver.
Sometimes, it takes providers that long to get new clients in for services, said Joy Spencer, CEO of Moms in Motion, a company based in Front Royal that helps families navigate waiver-related services.
“I don’t think there’s anybody that you’ll talk to that will say that we’re going to be able to support [the increase in DD waiver],” Spencer said. “If you give the slots then you also have to work on provider capacity. Those two things go hand in hand or else the people that need to access those services, they still won’t be able to access them.”
There are currently 190 families who have reached the 150-day cutoff for accessing services, said Tonya Milling, executive director of the Arc of Virginia, an advocacy organization for people with disabilities.
She spoke in support of House Bill 577, which would extend the sunset date to a period of one year if needed. The bill passed the House with unanimous support.
“This is going to allow time for capacity to build,” Milling said at a hearing for the bill last week in the House Social Services Subcommittee.
Not enough providers
Last year, legislators voted to increase the rate at which the state reimburses providers for services that fall under the DD waiver. The idea was that the new rates would allow providers to increase wages and thus stabilize the provider network before expanding DD waiver slots.
But the funding fell short, failing to reach the benchmark that was presented in a state-commissioned review of payment rates for services delivered through the DD waiver program, Spencer said.
Now that waivers are being added, Spencer says that provider capacity is still below what’s needed to support increased demand.
The demand for direct care workers in Virginia is expected to grow by 23%, or 153,000 openings, by 2028, according to workforce data from PHI, a nonprofit organization that works to improve long-term services and supports for the elderly and disabled. In 2022, there were 95,500 direct care workers in the commonwealth.
For Spencer’s business, she started the year with about 78 facilitators. In order to serve her 12,500 clients across Virginia, she needs a total of 130.
Spencer’s company helps families facilitate consumer-directed services, a service model that allows family caregivers to hire and manage a person of their choice to assist in their loved one’s care.
State regulations for this service model make it difficult to attract administrative workers, Spencer said. The state requires that the consumer-directed employee have three years of direct care experience, and a facilitator, like Spencer, must check in on the family on a regular basis.
The facilitators are required to have college degrees, but low reimbursement means Spencer cannot afford to offer competitive wages to her employees.
Spencer worked with legislators this year to introduce a budget amendment that includes updated rates for consumer-directed services. If the amendment is unsuccessful, Spencer said she will have to start looking at ways to close her business.
She employs about 165 people, but in the last year, about half of her staff left for better job opportunities. Because of the high turnover, she’s constantly hiring new employees.
A separate bill, HB499, carried by Del. Laura Cohen, D-Fairfax, asks legislators to remove the bachelor’s degree requirement to help attract more workers.
At least seven Virginia companies providing the same services as Moms in Motion have closed in the last three years because the business was unsustainable, Spencer said. She inherited the clients who were left behind.
A state in transition
In 2012, the Department of Justice issued a review of Virginia’s services for individuals with intellectual and developmental disabilities, saying that the state has been slower than others to phase out institutionalized care and was noncompliant with the Americans with Disabilities Act.
A series of accidents and deaths at the Central Virginia Training Center near Lynchburg triggered a 2008 investigation of the facility. That investigation eventually led to the broader review of disability services in the state.
The state and the DOJ reached a settlement agreement to improve community services and minimize institutionalized care across Virginia. Last year, the DOJ committee completed its 22nd review of the commonwealth’s disability services network. There are 154 indicators that Virginia has yet to achieve, including thresholds in crisis services, case management, community living options, data collection to assess quality of care, and mortality reviews.
The settlement has been extended to Dec. 31, 2024. If the state is not in compliance with the agreement at that time, it will be extended again.
The reviews are performed about every six months and have spurred a significant transitional period for the commonwealth. While a lot of progress has been made, there is still a long way to go, said Teri Morgan, executive director of the Virginia Board for People with Disabilities.
The board is a state agency that derives its authority from the Developmental Disabilities Assistance and Bill of Rights Act. Every state and territory in the country has a similar body to advise state leadership on issues related to people with disabilities.
“Virginia is going through a transition from segregated living to integrated and community services [for people with disabilities],” Morgan said.
Over half of the people on the DD waiting lists are children who have a particularly hard time accessing services when they have able-bodied parents to care for them, Morgan said.
More work can be done when it comes to reimbursement rates, and Morgan acknowledged that the workforce crisis is still a challenge. But the increase in DD waiver slots is a good next step for addressing the dearth of services in the state.
Budget amendments have been introduced this session to bolster provider capacity, including a $5.2 million one-time allocation to the Arc of Virginia for workforce development and business expansion. Of the appropriation, $2 million would be used to fund a recruitment campaign, $2.9 million for business startups and expansion incubators, and $330,000 to educate people on the underused inclusive services provided to individuals with disabilities.
“We’re at that tipping point, it’s been a long tipping point, but the community is getting to a point where we’re looking at this differently,” Morgan said. “I understand the workforce crisis is a real issue and concern, but it’s almost like the chicken or the egg. We have an opportunity now to get those slots and then we can worry about how to build capacity.”