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Thousands of Families Waiting for State Disability Services, Providers

woman and boy on couch look at picture album
Kristina Ferguson and her son, RJ, at their home in Chesterfield County. RJ is one of more than 13,000 Virginians on the waiting list for a Medicaid waiver. (Photo by Megan Pauly/VPM)

Nearly a decade ago, a federal investigation found Virginia was failing to provide adequate services to people with severe disabilities. Today, the demand for these services has only increased. Since 2012, the number of people on a waitlist to receive services through a Developmental Disability (DD) Medicaid waiver has more than doubled to about 13,000 people, including more than 3,000 with the most intense needs. 

14-year-old Robert Ferguson Jr. is among the 13,000 on the DD waiver waitlist. He lives with his parents in Chesterfield County and likes taking photos, reading books about cars and singing in his church choir. 

Robert, or RJ, as his mother Kristina Ferguson calls him, has autism and a speech language impairment. He can handle basic hygiene and self care himself but needs intensive academic support. His parents are paying out of pocket for an array of services for RJ, which add up. There’s a tutor that costs $30 a session, and specialists like his speech therapists at $150 a week. Even an after school program.

“The daycare is $80 a week,” Ferguson said. “$80 times 4…that’s $320 a month.”

Right now, Ferguson and her husband are both working overtime at their full-time jobs, and pursuing advanced degrees “so that we can help our son,” Ferguson said. “Because our son is going to need help for quite a while.”

RJ has been on the waitlist to receive state support in the form of a DD Medicaid waiver for a few years now. That would help pay for services like in-home support, job training, and other things to help him live as independently as possible when he gets older. 

38-year-old Virginia Casey is also on the waitlist, and has been for nearly two decades. She has autism as well.

“It makes me pretty smart,” Casey said. Especially, Casey says, when it comes to computers and video games which she loves. But, she needs help with basic self care, like telling whether bath water is hot or cold.

“When she finishes washing her hands, she can't tell when her hands are dry,” said Cheryl Emory, Virginia’s mom. “So there are a lot of sensory integrative issues.”

Emory and her husband are Virginia’s primary caretakers. Virginia got a CCC Plus Medicaid waiver a few years ago that pays for some hourly services, but Emory says it’s “almost like a gift with strings attached” because it’s hard to find providers willing to work at the current hourly rates for respite and attendant care. 

“At $9 and 40 cents an hour, it's hard to find them,” Emory said. “And if you do find somebody, they don't usually last a very long time.”

They worry about what services will be available so Virginia can remain as independent as possible when they’re no longer around to help care for her. With a DD waiver, she could live in a group home or live with another family - or family member - that’s paid to care for her. 

“We're pushing 70 and I don't want a decision to be made in a time of stress,” Emory said. “I've asked family members if they would like to do it, but they all say, ‘Oh, we don't want money to take care of Virginia.’”

Tonya Milling, executive director for statewide advocacy group The Arc of Virginia, says the day rate for in-home care is also low, which makes it harder for families to seek around-the-clock care in their own homes. She calls it the “inclusion penalty.” 

“There is no incentive for a provider to provide [in-home support] because it is paid a third less than if that same provider decided to open a group home,” Milling said.

For example, the starting day rate for caring for one person in their home? Just over $136 dollars. But if you’re caring for four people in a group home, you could make over five times that at over $200 per person. 

But even providers in group settings struggle to make the math work. Lolita Epps owns and runs Henrico County-based Family Life Services, Inc. that operates six group homes for individuals living with intellectual disabilities and says it’s hard to retain staff.

“We tend to have to compete with a number of different industries, Target, McDonald's...their pay rate is very competitive,” Epps said. “And we have to do some creative things and offer creative opportunities to keep people engaged and wanting to provide care to the outstanding clients that we serve.”

Milling says both funding the waivers and increasing rates for providers are critical. But she says that without rate increases there won’t be providers available to serve folks who get a waiver slot. 

Sen. George Barker (D-Alexandria) said raising the reimbursement rates for providers “will be the big thing that I think we’ll tackle this year.” He introduced a budget amendment that would put day rates for in-home providers in line with rates for group homes. That amendment is not currently included in the draft Senate budget released on Sunday. 

“Right now we don't have the capacity in the community to be able to -- even if we provided the funding for these [DD waiver] slots -- to be able to fill them quickly,” Barker said. “And part of the reason we don't have a whole lot of capacity within the community is that the rates that we're paying, are in many instances, not adequate for people who were on the waivers.”

The Senate and House budgets currently include over $100 million in funding to increase DD waiver rates for some providers, although increases for supported living providers are not included.  

And while support for reducing the waitlist has garnered bipartisan support in years past, it’s all come down to funding at the end of the day. It comes with another big sticker price: close to $100 million just to eliminate the waitlist for the first 3,000 people. Northam’s budget includes funding for 1,135 slots and the Senate budget includes funding for 500 more. 

“I've been trying for years to get the priority 1 DD waiver waitlist funded,” Sen. Siobhan Dunnavant (R- Henrico) said. “That moves to a higher level of priority in my opinion than some of the other things that we all want to fund.” 

Dunnavant says she’s gotten all Senate Republicans to sign on to support her budget amendment to fully fund the priority 1 waitlist this year. Multiple lawmakers across party lines in both the House and Senate have introduced budget amendments to do the same, but it’ll be weeks before families and individuals find out if any of that legislative interest will translate into financial support.

Megan Pauly covers education and healthcare issues in the greater Richmond region. She was a 2020-21 reporting fellow with ProPublica's Local Reporting Network and a 2019-20 reporting fellow with the Education Writers Association.