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Leonard (not his real name) has a profound intellectual disability. For Leonard, that means an IQ less than 50. He also breathes through a tracheostomy tube, cannot walk, talk, see, or use his hands much. Because of his condition, he requires 24-hour care or he could die.
To receive and pay for that care, Leonard, 25, must be committed under D.C. law, a requirement that no longer exists anywhere else in the country. But the same law also mandates that Leonard’s commitment come with a federally funded personal attorney to advocate on his behalf for life.
New legislation that the D.C. Council will consider this fall, dubiously named the “Citizens with Intellectual Disabilities Civil Rights Restoration Act,” would change the way the next Leonard entering the system qualifies for care—and is protected—in the District.
The proposed law would eliminate new civil commitments altogether and introduce something called “a supported decision-making agreement,” a separate option for avoiding guardianship available to a wide range of people with disabilities, not just those currently committed. The agreement would be made between a person with an intellectual disability and a “supporter.” The supporter in theory would be able to better help—and empower—a person with an intellectual disability to make decisions they might not be able to make on their own.
It would not remove any attorneys from their existing clients, but the law would eliminate the appointment of new lawyers for people who would’ve been committed in the past—those with moderate, severe, and profound intellectual disabilities—a move that has the lawyers who represent the District’s 705 currently committed individuals up in arms.
“What’s wrong with having a lawyer for free? Why would anyone not want that?” asks John Connelly, an attorney with more than 40 years of experience in the disability rights field.
Connelly believes the proposed legislation would deprive new entrants to the system who would’ve been committed in the past “of multiple, significant, and long-standing legal rights and due process protections.”
“We’re talking about a move away from a more paternalistic system,” says Robert Dinerstein, director of the disability rights law clinic at American University. “There’s a stigma to being committed, and that’s something I think some of the lawyers haven’t focused on.”
The current intellectual disability rights law was passed in 1978, at a time when big mental health institutions were dominant, and it was primarily meant to prevent people from being placed in them unjustly. The current model in caring for people with intellectual disabilities is smaller group homes, day programs, and care facilities integrated within communities.
“Having the court there as a venue you can go to easily is a very good option,” says Sandy Bernstein, president of University Legal Services, a D.C.-based protection and advocacy organization for people with intellectual disabilities. “But being committed infringes on people’s privacy. The court can order certain services, decide your medical care, how much you weigh, what you do every day.”
Some context: Until recently, D.C. had a horrifying track record at serving its intellectually disabled population. The current law was largely a response to a class-action lawsuit stemming from years of abuse, neglect, and preventable deaths at Forest Haven, the District’s sole mental health facility in Laurel, Maryland.
The lead plaintiff in the case was Joy Evans, a District resident who was committed to Forest Haven when she was nine and died there eight years later. The case was filed in 1976, and “Evans” has since become a kind of shorthand for 30-odd years of the District’s failure to care for its most vulnerable citizens.
The Evans court order that mandated how the District must improve its systems for caring and monitoring people with intellectual disabilities took 40 years to satisfy, and was only lifted earlier this year.
“My biggest concern is removing court protections,” says at-large Councilmember Robert White. The [new] bill kind of takes a ‘trust-us’ approach. I was surprised we were pursuing it so soon [after the Evans order was lifted].”
In 1999, eight years after Forest Haven closed and 20 years into the Evans order, The Washington Post published a series of articles that detailed squalid, dangerous conditions at a number of group homes where former Forest Haven patients lived.
Sexual predation, over-drugging, beatings by care workers, brazen fraud—the Post stories described a deeply broken system where care providers were getting rich while those with intellectual disabilities were stuck in the same hell as Forest Haven, just with different wallpaper.
The District’s basic defense at the time was that the city didn’t have the money to perform better oversight.
“We were born out of that [Evans] case,” says Jared Morris, deputy director of D.C.’s Department of Disability Services, which replaced the Mental Retardation and Developmental Disabilities Administration in 2006.
DDS authored the new legislation for the Bowser administration.
Over the past 10 years, DDS has developed a slew of internal monitoring programs that regularly evaluate care providers, investigate reported incidents, and track housing inspections performed by the Department of Health, all of it entered into the agency’s case management database, where it is analyzed regularly.
DDS also works closely with Quality Trust for Individuals with Disabilities, an independent protection and advocacy organization that the Evans order required the District to fund. Along with University Legal Services, the two organizations would become the only non-government entities charged with watching out for the District’s entire intellectually disabled community, about 2,500 of whom receive services from DDS.
“Civil commitment has outlived its time in the District,” says Morgan Whitlatch, legal director for Quality Trust, which extensively monitors DDS and conducts regular, randomized field visits. “We’re trying to create a culture of self-advocacy.”
But the lawyers with intellectually disabled clients argue that the limits of self-advocacy are the very reason they are necessary.
“We all find things when we go into these homes,” says Betty Sinowitz, a lawyer with 20 clients committed under D.C. law. “You may have someone who has problems with their hands and they don’t have knobs on the drawers, or you have someone overweight and they’ve been ordering in pizza for two weeks straight.”
Lawyer Joel Curtis has a client, Kim Cree, who was in a bad spot a few years ago. Because of a licensing snafu, DDS was going to move Cree, who uses a wheelchair, to a different group home, prompting Curtis to seek court interference to stop it.
“DDS was perfectly willing to separate people who lived together for a long time,” Curtis says. “These people are like family. She would’ve wound up in another home with strangers, one that might not have been as accessible to wheelchairs.”
Curtis also represents Leonard, who was on his way to a nursing home three years ago because DDS couldn’t find a facility in the District willing to take him with his significant medical needs. Had Curtis not intervened and worked with Leonard’s aunt to find a facility willing to take him, he believes Leonard would likely be passing his waking hours in a nursing home day room without much stimulation or interaction with anyone at all.
One idea to ensure an extra measure of independent oversight in the new law is to add a grievance system. Councilmember White says his support for the bill “hinges” on it or at least a timeline for its creation.
“There needs to be something else in place if court oversight goes away,” says Bernstein. “For years now, we’ve been asking for a meaningful grievance system, and they [DDS] refuse to do it.”
Says DDS director Andrew Reese, “I have difficulty identifying where there’s a gap in oversight [between DDS and Quality Trust].”
Advocates cite as a model the grievance system the District’s Department of Behavioral Health uses.
“The opportunity for a person with a disability to speak directly to a mediator is really powerful,” says Dinerstein. “For many, they’re talking to the wall, and no one’s talking back.”
Ward 1 councilmember Brianne Nadeau, who chairs the council’s health and human services committee, doesn’t consider the absence of a grievance system a flaw in the new bill. “I don’t think this is an oversight issue as much as a process issue,” she says. “This [law] is not something we’re going to put in place and walk away from.”
What the disagreement over the new bill seems to boil down to is finding a balance between self-determination and safeguarding against abuse and neglect.
“There’s a philosophical thing going on that all these people [with intellectual disabilities] need protection,” says Carol Grigsby, a parent of a child with a mild intellectual disability who blogs on D.C. disability issues and supports the new bill. “I believe they need agency and people to help them exercise their agency.”