The Washington PostDemocracy Dies in Darkness

Virginia is still failing people with disabilities, say families who are pleading for lawmakers to ‘see’ them

Virginians have written letters in recent weeks that offer powerful reasons for why the state needs to do more.

Loretta Twyman, right, with her 62-year-old sister, Elizabeth King. (Courtesy of Loretta Twyman)
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Loretta Twyman hasn’t let her sister know the extent of her worries. She’s only told her they need help — and they need it soon.

“Libby, I got to go back to work in April, and I can’t leave you by yourself,” Twyman recalls saying to her sister, Elizabeth King, who is 62 and has intellectual and developmental disabilities.

For the last decade, the two have lived together in a house in Loudoun County and Twyman, who is 60, wouldn’t change that. She made a promise to her parents long ago that she would always take care of her sister and she plans on keeping her word.

“Family takes care of family,” she tells me on a recent afternoon. “There would be no way while I’m breathing that I would let my sister go into an institution. They would have to let me live there, too, because I would not leave her.”

During the pandemic, Twyman has been able to work from home, an arrangement that has allowed her to help her sister who has experienced health challenges that have left her unable to get around without a walker or take care of some of her basic needs without assistance. But in a few weeks, Twyman will have to return to an office building, where she works as a procurement specialist for a government contractor. That deadline has left her facing a difficult reality: She can’t afford to lose her job. She can’t afford to pay someone to watch her sister. And she can’t afford to leave her sister alone and risk something happening to her.

Twyman recently applied for a developmental disability waiver from Virginia for her sister that, if granted, would allow King to pay someone to assist her during the day. The family is placing their hopes in that waiver. They also know more than 13,000 people in the state are already waiting for one.

In 2012, the U.S. Justice Department found that Virginia was violating the Americans With Disabilities Act by not providing services to individuals with intellectual and developmental disabilities in the most integrated setting appropriate to their needs. A court-monitored settlement called for the state to make changes that would lessen its dependency on institutional settings and allow more residents to receive services at home and in their communities.

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But a decade later, families, disability rights advocates and service providers say the state continues to fail thousands of residents, leaving them lingering on wait lists and unable to pay competitive wages to aides who are leaving for other jobs. Recent weeks have seen Virginians write letters that describe proposed budgets by the House and Senate as falling short and call on lawmakers to do more for residents who have already been waiting too long for progress.

“The overall goal of the settlement was to build a viable, robust community-based system, and we don’t have a viable, robust system,” Tonya Milling, the executive director of the Arc of Virginia, says. “A decade later, we haven’t gotten very far in really providing services for people in the community.”

One of the proposed budgets lawmakers are considering calls for removing 600 waiver slots from the 1,200 that exist. As of January, more than 3,300 people, of the more than 13,000 people waiting for waivers in the state, had been designated “priority one” cases, meaning their needs are the most pressing, Milling says.

“We were hoping this year was going to finally be a year that folks took our needs seriously,” Karen Smith, the executive director of the Arc of Greater Prince William, says. “But that hasn’t happened.”

Even when people are granted waivers, finding help has been a challenge, she says. State-approved rates can make wages fall below what people can earn at grocery stores and fast food restaurants. In Prince William County, a $600,000-plus house that was purchased through a competitive grant was supposed to serve as a group home to four men. Instead, it sits empty because not enough people could be found to staff it, Smith says.

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“We used to have loads of people apply. Now we don’t,” she says. Families have faced similar struggles, she says. “Some families get so weary that they don’t try to find help because they know help is not there.”

The letters families have sent lawmakers, who haven’t yet decided on a final budget, offer powerful arguments for why the state needs to invest more now. I have read about a dozen of those letters, and they tell of critical immediate needs and future unknown ones.

“What happens in another 16 years, when he’s no longer small enough to carry and cute as a button?” writes the mother of a toddler who is described as having a “rare and catastrophic form of epilepsy that prevents his brain from processing basic information” and makes it unlikely that he will ever walk, crawl or talk.

Another parent of a child who was born the year Virginia entered into the settlement describes people as suffering “due to the inaction of our government” and calls on lawmakers to “see us and remember us.”

One letter reads: “My husband and I are the 72-year-old parents of a 32-year-old son with autism. Our son is on the DD Wait List, but because neither of us have a life-threatening illness at this time, our son will be waiting for help until something catastrophic happens to one or both of us.”

Another reads: “I have a 16-year-old son with Autism who has been on the DD waiting list for 13 years. He needs the funding and support of this waiver to help him realize his place in the community as an adult and hopefully become a somewhat independent and self-supporting, tax paying individual. He deserves this chance as all Americans do.”

Another: “I was born with Cerebral Palsy and spent 9 years of my life in a nursing home when my mother became ill and could no longer care for me. I now live on my own in the community with supports that I need from Caregivers. I struggle daily with finding and keeping Caregivers because the pay is so low and the job does not offer benefits.”

Twyman says she hasn’t told King all they are up against, but her sister has noticed the stress that weighs on her.

“She says, ‘I wish I could help,’ ” Twyman says. “She says, ‘I’m sorry I’m the way I am. I’m sorry I’m so dependent on you.’ ”

During those moments, Twyman has assured King she has no reason to apologize. She has also tried to ease her fears by reminding her sister of the one thing they can control.

“Don’t worry,” Twyman says she tells her, “because we have each other.”