For a moment, imagine that you couldn’t talk and were in pain.
Imagine that pain grew so intense that you ended up in a hospital, but because of a disability you couldn’t tell anyone whether your feet or your chest or your whole body ached.
Imagine you had a doctor who wanted to get you healthy and home but wasn’t quite sure what healthy looked like for you and whether your home was equipped to handle your needs.
Right now, as the result of a long-standing partnership between the D.C. government and Georgetown University, a physician who understands intellectual and developmental disabilities would show up and speak on your behalf. A nurse, trained in those same areas, would then work to get you home as soon as you were well enough. Once home, you would receive another visit to make sure that you were okay and that your caretaker understood your needs.
These are some of the services Georgetown University provides through its DDA Health Initiative. These are also some of the services that — unless something is done soon — will disappear on Aug. 31, because the D.C. Department on Disability Services (DDS) has decided not to renew Georgetown’s contract.
The decision was made quietly and has unnerved those who work closest with the city’s most vulnerable residents.
They fear that it will hurt men and women who have intellectual and developmental disabilities and set the city agency in charge of serving that population back on all the progress it made under 40 years of court supervision.
“We are worried,” said Precious Myers-Brown, the local director of St. John’s Community Services, one of the oldest organizations to serve people with disabilities in the District. “My concern is for the people we support and how easily they can get lost in the system.”
Myers-Brown said she remembers when people with intellectual and developmental disabilities would enter the hospital and stay there for long stretches of time, leaving them more vulnerable to secondary infections and depression.
Now, she said, her staff is able to call the physician and nurses who work with Georgetown at night or on weekends to get crucial support for the people her organization serves.
“Not only are they coming home quicker,” she said, “but before they even return home, they make sure all systems are in place so the person can successfully return home. That is invaluable.”
She added: “Who will do that? I’m trying to think in my head who will I call if the contract ends on that day?”
It’s an important question and, if we look at what the Georgetown group provides, just touches on what could be lost.
Who will provide sex education to people with disabilities?
Who will train other nurses throughout the city on the best practices when it comes to disabled people?
Who will help parents with intellectual and developmental disabilities learn how to take care of their children, who may or may not have their own health challenges?
“I don’t think DDS fully thought through what it would mean to lose a contract like this,” said Danielle Darby , the chief operating officer of RCM of Washington, one of the largest disability service providers in the city.
She praised the Georgetown staff for having the skills and network to help people with profound needs at critical moments in their care.
“Some people can’t even tell you where they are in pain,” she said. “They are just crying.”
Under the $1.3 million contract (which isn’t much if you consider that DDS’s budget in 2018 was $168 million), the Georgetown staff handles 4,000 consultations a year. It has also helped reduce hospital stays from an average of 14 days to six days.
Matt Mason, director of the DDA Health Initiative, said the contract with DDS has been in place for 14 years and that the staff learned on Friday that it would not be renewed. That means the entire team — a physician, two nurses, two psychologists, two home visitors, a public health analyst and a health educator — will soon be out of work.
More concerning, Mason said, is that the city has not presented a clear plan for how it will transition those services and doesn’t have the ability to replicate quickly what is already in place.
“How do you help a person with a disability breast-feed?” he said. “How do you support a person who has sexual identity issues when they have a disability? How do you help a couple who have disabilities have a marriage? Who is doing that in the District? I’d like to say there are a lot of people doing that, but there isn’t.”
The Department on Disability Services, through a statement from a spokesperson, said parenting support and sexuality education are now available through “a waiver service.”
“DDS is currently working with the District’s Office of Contracting and Procurement to initiate a contract for a medical director and discharge planning,” the statement said. “Additionally, DDS has expanded its internal capacity by hiring three nurse educators.”
Ian Paregol, the executive director of the DC Coalition of Disability Service Providers, questioned whether any families, individuals with disabilities or providers were involved in the city’s decision.
“While we recognize this is the District’s decision to make,” he said, “given that Georgetown’s work on the DDA Initiative affects so many lives, I’m curious whether stakeholder feedback was considered in letting the contract lapse.”
If someone had asked Thomas Mangrum, who has developmental and learning disabilities, for his thoughts on the issue, he would have told them that people need more help.
He is 55, uses a wheelchair, and knows what it feels like to enter a hospital and encounter someone who doesn’t understand how to treat someone with a disability.
“If they see my home health aide with me, they end up talking to my aide and not me,” he said. “They will talk to you like you’re a dummy.”
He is able to speak up for himself and has done so through his work with Project ACTION , a self-advocacy coalition. But he knows that many people don’t have that ability.
Imagining what it might feel like to be them, he said, is important, even if it’s just for a moment.
“I believe if you always try to make sure to put yourself in other people’s shoes, then you can see stuff better,” he said. “I always tell people you should make life better for other people because you could end up in their same position.”