The former Forest Haven asylum in Laurel, Maryland, photographed in 2012 Credit: Jack Parrott/Flickr

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On the day in January 2017 when the District of Columbia was released from 40 years of federal court supervision of its care for people with intellectual and developmental disabilities, cautious optimism hung in the air.

Sandy Bernstein, one of the attorneys who represented people with developmental disabilities in the class action lawsuit known in its final years as Joy Evans v. Muriel Bowser, told the judge that her clients and their family members were “pleased with the progress that has been made but concerned that it will not be maintained when the case is closed and oversight ends.”

The lawsuit was originally filed in 1976 over conditions at Forest Haven, a facility that housed more than 1,000 people considered developmentally disabled. In 1978, U.S. District Court Judge John Pratt ruled the District had violated the constitutional rights of those residents and ordered the facility to close. It remained open until 1991, at which point the remaining residents were moved into group homes. 

Residents at the Laurel, Maryland, facility suffered physical, psychological, and sexual abuse from staff and other residents. They were denied medical and dental treatment, and some died while confined there. Even after the facility closed, the Washington Post documented 116 troubling deaths of developmentally disabled people living in group homes in the community. 

The Evans case, spanning eight mayoral administrations and three federal judges, lingered in the court system as the District repeatedly failed to meet the court’s orders. In 2017, D.C. finally met all 70 conditions set by the court. 

Bernstein cautioned at the January 2017 hearing that in order to keep serving disabled residents, the District must, among other things, continue its relationship with Georgetown University, which provides outside expertise in caring for people with developmental disabilities through its “Health Initiative” program. The Health Initiative is part of the federally funded University Center for Excellence in Developmental Disabilities network, branches of which exist in almost every state and provide research on and services for people with disabilities.

D.C. Department of Disability Services Director Andrew Reese, who had been in the job for less than a year at that point, pledged “continued collaboration” with disability rights organizations and families to improve the District’s care and support of people with developmental disabilities.

U.S. District Court Judge Ellen Segal Huvelle called it a “joyous occasion,” according to a transcript of the proceedings. Cake was served afterward.

But now Bernstein and several other advocates are raising red flags after Reese’s department opted not to continue its 14-year relationship with Georgetown University that began as a result of the lawsuit.

In a letter to Reese, Bernstein describes one of Georgetown’s most important functions under the $1.3 million contract. She writes about a disabled man who was hospitalized with a serious bed sore and needed “life-sustaining” surgery. At first the patient was scared and would not consent to the surgery, Bernstein says. But he later agreed after a nurse with the Health Initiative took the time to explain why the procedure was necessary. 

“The Health Initiative’s involvement avoided further hospitalization of the client, which was instrumental in improving his health and decreased the medical costs to the District,” she writes. 

Some individuals’ disabilities make communication with hospital doctors and nurses impossible, so a Georgetown physician and nurse work with hospital staff to make sure the person is properly cared for and returned home. Georgetown also provides sex education and parenting support for developmentally disabled people and training for nurses throughout the District on how to care for disabled people.

“It’s concerning when you have a case and there starts to be slippage and the agency starts backing away from the safeguards they put in place when they were under litigation without any indication they’re not needed anymore,” Bernstein says. “Of course they’re still needed.”

In the past month, advocates, lawyers, and former state disability department heads nationwide have raised similar alarms in letters sent to District officials. 

Ward 1 Councilmember Brianne Nadeau, whose Committee on Human Services has oversight of DDS, called a rare public roundtable to discuss the change during the Council’s summer recess, on July 23. Nadeau says DDS has not alerted her to any issues with Georgetown’s performance. 

DDS publicized its transition plan late last Friday afternoon under pressure from disability rights advocates. The plan awards some of Georgetown’s services, such as the hospital services, to another government contractor while others, such as sex education, are covered under a Medicaid waiver. 

Reese’s explanation during the roundtable did not seem to satisfy the advocates, lawyers, and people with disabilities who attended the hearing and raised concerns.

Chris Murphy, Georgetown’s vice president for government relations and community engagement, says the university will consider putting pressure on Mayor Muriel Bowser to intervene, though it’s unclear what, if anything, she could do.

***

In December 2018, representatives from Georgetown met with Reese, DDS deputy director Winslow Woodland, and chief of staff Thomas (Jared) Morris, according to Murphy, who served as former Mayor Vince Gray’s chief of staff. 

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Murphy says they expected to talk about Georgetown’s role in the agency’s vision for continuing to care for people with developmental disabilities. But instead, he says, much of the discussion focused on who owned the rights to materials on Georgetown’s website for the Health Initiative.

“We were told that it would be a challenge for DDS to keep funding and services at a pre-Evans standard in a post-Evans world,” he says via email, referring to the lawsuit. 

At that time, the Georgetown agreement was in the final year of a four-year deal that accounted for a fraction of DDS’ $168 million budget for 2018. Although Georgetown benefited from a sole-source contract to that point, Murphy says the Georgetown representatives told Reese and his deputies that they welcomed a competitive bidding process going forward. 

On May 31, DDS notified Georgetown that it would not renew its contract, which ends August 31 and pays for a physician, two nurses, two psychologists, two home visitors, a health educator, and a health analyst. “We were not given a reason,” Murphy says. 

That notification prompted disability advocates across the nation to send letters questioning the decision. They called for a more public and transparent process and scolded DDS for terminating the contract with no public transition plan in place. 

In a letter to Reese on July 16, Alison Whyte, executive director of the DC Developmental Disabilities Council, a mayoral-appointed body that identifies and addresses the needs of those with developmental disabilities, criticized the lack of communication from DDS about its decision. 

“This is not the kind of work that can be done by just anyone and this kind of specific experience should not be taken for granted,” Whyte wrote. 

Perhaps the most damning letter was addressed to Mayor Bowser and Chairman Phil Mendelson and signed by eight former directors and deputy directors of state disability agencies from Oregon to Pennsylvania. The letter says publicity around the decades-long class action lawsuit negatively affected disability care systems in their own states. “We all had a stake in DC getting out of the longest lawsuit in the history of disability services, and we view this recent decision as a dangerous step in the wrong direction,” the letter says. 

“Its value extends far beyond the four corners of any contract,” the letter continues. “The generic service system cannot fill the void. As former directors ourselves, we are familiar with the impulse, when federal oversight ends, to pull away from the type of external support that Georgetown provides. We know, from experience, that this would be the wrong move for the District.” 

***

In early July, Winslow, the DDS deputy director, called a nurse and a doctor who work for Georgetown’s Health Initiative program to offer them jobs through a different contractor, according to three people affiliated with the university. 

That was around the same time the Washington Post first published a story quoting disability service providers who also raised concerns about the end of Georgetown’s contract.

Both individuals declined the offer, those sources tell LL, saying the offers are evidence that DDS did not have a thorough transition plan before it decided to cancel Georgetown’s contract. 

Motir Services Inc., which has won tens of millions of dollars in District contracts over the years, inked a one-year, $760,000 agreement with DDS with options to extend, dated May 1, that includes a speech-language pathologist, a clinical psychologist, a physical therapist, and a project manager. Reese says the company also recently hired a physician to replace the doctor working through Georgetown. 

Through its other District contracts, the minority-owned business provides janitorial services, landscaping, hauling and moving services, IT services, and medical staffing. Motir’s president, Emmanuel Irono, has personally and through his company donated thousands of dollars to the mayoral campaigns of Bowser, Gray, and Adrian Fenty

During Tuesday’s roundtable, disability rights advocates, lawyers, care providers, and people with disabilities testified in support of Georgetown’s Health Initiative. Nearly every witness described feeling blindsided by DDS’ decision to end the contract and several described the transition as “piecemeal.” 

Reese defended the decision, saying that Georgetown helped the District build a “system of providers and robust care,” and that it’s time to transfer those services away from Georgetown’s contract as many of them are now covered under a Medicaid waiver. 

“I’m confident that all the necessary services will continue without interruption,” he said at the hearing. “We have developed a system where services are available from other sources including [certified business enterprises.]” 

Reese said that comments about his lack of engagement with the people most affected by his decision was “confusing.” From his perspective, DDS had publicly indicated two years ago that the contract would not continue.

Gray, who joined Nadeau for the hearing and who ran the Department of Human Services when Forest Haven closed, said Reese’s testimony did not give him confidence in a smooth transition. 

In an interview following the hearing, Nadeau tells LL she was most struck by the disconnect between Reese and the 30 witnesses regarding the end of DDS’ relationship with Georgetown. 

“At the very least there is a massive communication breakdown, and at the very worst we’re making a grave mistake,” she says. “The reality is probably somewhere in between.” 

Nadeau left with more questions and is considering sending a letter to the mayor asking her to reconsider the transition timeline. She’s also contemplating asking DDS for a list of every individual receiving services from Georgetown and for DDS’ specific plan for how they will transition those services—similar to what she did when the family homeless shelter at D.C. General closed in 2018. 

“On its face, I don’t care if Georgetown or some other operator provides these services, but if we have a program that’s been getting really good results for our constituents, I want to make sure we don’t eliminate that without real buy-in,” Nadeau says. “What I saw today was a lack of buy-in.” 

This post has been updated to include details from the July 23 public roundtable and additional comments from Brianne Nadeau.

Photo by Flickr user Jack Parrott, used under the Creative Commons BY-NC-ND 2.0 license