Tuesday, June 18, 2013

When advocacy leads to tragedy: P&A under scrutiny

On May 20, 2013 a U.S. House Energy and Commerce Subcommittee on Oversight and Investigations held a hearing on the  federal Substance Abuse and Mental Health Services Administration (SAMHSA) and how well it serves people with severe mental illness. The agency was criticized for providing funding to advocacy groups that believe that mental illness is not an illness, that it should not be treated with medication, and that treatment of mental illness infringes on the rights of people who are mentally ill. SAMHSA also funds Protection and Advocacy agencies in every state to provide legal services to people with mental illness. These agencies came under particularly close scrutiny for their overzealous and sometimes dangerous advocacy that prevents severely mentaly ill patients from receiving treatment that could help them. [These are the same P&A's that provide legal services for people with developmental disabilities funded by the Developmental Disabilities Assistance and Bill of Rights Act, the DD Act.]

In testimony before the committee, Joe Bruce, the father of a man with paranoid schizophrenia who was involuntarily committed to a mental hospital in Augusta, Maine in 2006, described how his son was assisted by advocates from the Disability Rights Center of Maine (Maine's P&A agency) to be released early from the hospital without medication and sent home to live with his parents. The incident ended tragically with the son William Bruce murdering his mother Amy in their home.

Here is a link to a video of Joe Bruce's compelling testimony before the committee.

The involvement of disability rights advocates in this case did not end with the tragedy of Amy Bruce's murder. Here are some excerpts from Joe Bruce's written testimony :

"The doctor’s decision to release him [William Bruce], which resulted in such a tragic outcome, was made without the benefit of all of Will’s history or any input from Amy and me."


"After his commitment to Riverview by the criminal court, I applied to become his guardian. Will was agreeable to this until, incredibly, a patient advocate told him, 'The guardianship is a bad idea. It would give your father complete power over you.' The attending physician (a new doctor), undoubtedly at the urging of DRCM [Disability Rights Center of Maine], refused to provide the evaluation required in the guardianship application. He told me, 'I could never
participate in anything that would cause your son to be considered an incapacitated person.' Bear in mind that at this point in time, Will had been placed in the hospital after being found incompetent to even stand trial!"[emphasis added]

Joe Bruce finally did become Will's guardian and only then did he learn the role of patient advocates in his son's premature and unmedicated release:
"The patient advocate, a Trish Callahan, told the treating doctor that DRCM regarded Amy and me as a 'negative force in Will’s life. Amy and I had never met any of these people or even heard of Disability Rights Center of Maine. In the treatment meetings, she acted like a criminal defense lawyer. She openly coached Will on how to answer the doctor’s questions so as to get Will the least treatment and the earliest release. She did this in the face of strongly contrary evidence of Will’s unsuitability for unmedicated release."
"Lest anyone believe this is a local, isolated occurrence, the National Disability Rights Network [NDRN], responding to the Wall Street Journal’s page one article concerning Will’s case, defended the actions of DRCM, and even prepared talking points to deflect criticism. The patient advocates can do this with impunity because they are literally accountable to no one... "

Joe Bruce and other families in Maine worked to change the only two options available to the courts at the time for people with severe mental illness: either place them in a hospital or release them unconditionally. A third option that was eventually adopted by the state, although opposed by patient advocates, is known as Assisted Outpatient Treatment that allows for the person to be released into the community with the condition that he remain on medication.

"As another example of DRCM’s lobbying influence in this area, while the Maine families and I were busy working on the AOT law, DRCM was successful in getting a bill through the Maine legislature to make it more difficult for families to become guardians. Becoming a guardian is the only way families of adult patients can be involved in the treatment of their loved ones where the patients are unwilling or unable to consent. Why do PAIMIs [P&A advocates] want guardianship to be more difficult? Because a guardianship lifts HIPAA secrecy and allows the guardians into the treatment meetings."

"Ironically and horribly, Will was only able to get treatment by killing his mother."
"Tragedy visits families every day. That is a sad fact of life. But an unbearable aspect of Amy’s death is that my own tax dollars helped make it possible..."

For people with Developmental Disabilities, abuses by DD Act programs including Protection and Advocacy have been documented in detail. The DD Act of 2000 has not been reauthorized in 13 years. Instead, the programs continue to get funding every year with very little oversight by Congress. This needs to change. Congressional oversight hearings would very likely reveal the same kinds of abuses by developmental disability advocates that they are finding with advocates for the severely mentally ill.

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