Waiting for help: Developmental disability advocates push for funding to meet an ever-growing need

Denille Francis spends a lot of time waiting, but without much hope.

She waits to see if her 10-year-old son, Quinn, will ever get the funding he needs from the state. Quinn has Down syndrome and a host of other health problems. His therapies and numerous medical interventions are rarely covered by his private insurance plan.

His mother waits and wonders: What will happen when Quinn ages out of public school, when she and her husband will have to choose between working full-time and taking care of their son to ensure he’s safe?

“Are we going to be able to take care of ourselves if we only had one income?” Francis asked. “Right now, there’s no way we’d be able to.”

Quinn is one of more than 12,700 people on Virginia’s Developmental Disability Waiver wait list. And this year, advocates are again making a push to put a significant dent in that wait list and fund those with the highest need.

The waivers fund a variety of supports that people with developmental disabilities need not only to reach their full potential, but to simply get by. It varies by the individual, but the waivers fund everything from nursing services to job coaching.

The waiver could do much for Quinn. His numerous therapy sessions would be covered so his family doesn’t have to pay out of pocket, his parents would be able to get some reprieve time — something that is virtually unheard of now — to lower their chances of developing their own health problems, a common problem for caretakers.

And the family could get some peace of mind, knowing that Quinn would have some supports to fall back on after he leaves public school.

But lack of funding means many people like Quinn and his family find themselves stuck on the wait list. There are three priority levels, and even those considered priority one — who are near or currently in crisis and need services within one year — wait for years.

Quinn is considered priority two. That means, his mother said, that he has almost no chance of getting the funding he needs, so long as there are still thousands of people ahead of him in the priority one category.

“We have friends that have literally died without ever getting a waiver. We know people who have been on the wait list for over 20 years,” Francis said. “At the current rate of funding, it is more likely he will grow old and die before he ever gets a waiver.”

Digging out of a hole

Last year, the General Assembly funded more waivers than ever in any single budget cycle, putting money toward 1,600 priority one waivers.

But there are still more than 12,000 people in all three priority levels who are waiting, including more than 2,195 who are in crisis and have been placed in priority one, according to the Department of Behavioral Health and Developmental Services. So advocates want to build on the momentum started last year.

“We’d like to stabilize the system,” said Tonya Milling, executive director of The Arc of Virginia, an advocacy group. “I believe that the opportunity that was created by last year’s investment, such a large investment, really creates an opportunity this year to finish that off and fully fund priority one.”

Families like Quinn’s came out in force to public hearings on the governor’s proposed budget just after the new year in Northern Virginia, Richmond and Hampton Roads. They told stories of lingering on the priority one waiting list for years, of their families breaking up and of all the challenges they face without the services they need.

Del. Luke Torian, D-Prince William, has submitted a $43.16 million budget amendment this session, which has a federal match, to fund priority one waivers.

“There is a tremendous need,” he said. “The lives are worth it, and the care is worth it.”

But whether or not the amendment makes it into the budget is very much uncertain, as the General Assembly grapples with other funding needs. Torian said he hopes that if the amendment doesn’t get funded in its entirety, hopefully lawmakers can at least devote some funding to make another dent in the wait list.

It may be expensive to fund the waivers, but letting them go unfunded is even more expensive, he said. It creates an economic burden for the state to wait until people are in crisis before actually giving them access to support services — otherwise working adults have to quit their jobs to take care of their loved ones, and families rack up thousands of dollars in debt.

Milling compares the problem to a hole that the state, advocates and families are trying to dig out of. Between General Assembly sessions, dirt gets thrown back in.

“So we want to take the chance while we can to get out of the hole now,” she said. “We know the legislature has tough things in front of them because there is so much need… But Virginians with developmental disabilities have been waiting. They just can’t wait any longer.”

‘There’s a lot of fear’

Every day for Francis and her husband, who live in Yorktown, is different. Quinn not only has Down syndrome, but he also has celiac disease and gets violently ill if he’s exposed to even a particle of gluten. And he has a sleep disorder that prevents him and his parents from sleeping through the night.

So days require careful coordination. Who can take Quinn to therapy? Who gets to nap when he falls asleep by 7 p.m., and who can wake up with him the first time he gets up at midnight — then at 1:30 a.m., then at 4:30? Who is going to be able to stay home and sit with him in the bathroom if he’s accidentally eaten something with gluten?

Quinn requires his parents’ constant attention and supervision. There have been times when he has gotten up and walked out the front door in his underwear, packed his lunch box full of popsicles and opened the car door. There have been times when Francis called the police at 5 a.m. when he left the house and she didn’t know where he went. And if he’s not having fun, he won’t willingly do anything they ask.

“It always has to be fun, or he won’t want any part of it,” she said. “You can cry during your lunch break or at night, but when you’re with him, you’d better make it fun.”

And yet they’re only considered priority two by the state, which means they’ll need services within two to five years. But the wait, of course, will be much longer. They’ve already been waiting three years.

“The older parents that have been waiting forever they tell you, ‘Save every penny, save all of your money because once your child finishes school there’s nothing, you’ll have to quit your job to supervise your child and make sure they’re safe,'” she said. “But you’re not in a situation to save money when your child is young because of their medical expenses.”

Looking toward the future means wondering how they’ll keep it up when he can’t rely on school. A lot of parents of people with disabilities develop heart disease, anxiety and mental health problems.

“There’s a lot of fear,” Francis said. “There’s a lot, a lot of concern.”

Their only hope has been inclusion, and the fact that Quinn is an active part of his community — he’s been in theater productions and goes bowling at his community center. He’s funny and expressive and good at making friends. Maybe, Francis hopes, one of his friends will start a business someday that has a job for Quinn to do.

Finding support outside of her community of parents with kids with developmental disabilities is essential, she said.

“You can’t take people who are drowning and say, ‘Go help each other swim,'” she said. “We’ve got to teach the world there’s a place for everyone.”