Editor’s note: This story was updated Dec. 29 to clarify funding for the five states that do not allow assisted outpatient treatment.
A federal mental health bill has ignited a debate about organizations that receive federal funding to advocate for the rights of people with disabilities, including mental illness.
U.S. House Resolution 2646, introduced in June and named the “Helping Families in Mental Health Crisis Act” by supporters, is a sweeping 173-page rewrite of the nation’s mental health system.
There is much in the bill that mental health advocates like, including the creation of a National Mental Health Policy Laboratory within the U.S. Department of Health and Human Services and a study of the costs of incarcerating people with severe mental illness.
But one provision near the end of the bill has created concern about the ability of groups like the Disability Rights Center of Kansas to fight for the civil rights of people who have disabilities, including mental illness.
“I think there’s a lot of positive features of the bill,” said Rick Cagan, executive director of the Kansas branch of the National Alliance on Mental Illness, or NAMI. “NAMI national certainly supports it, and we have been urging them to take a strong advocacy position to remove the provisions from the bill that would affect the protection and advocacy organizations like the Disability Rights Center.”
The Disability Rights Center is part of a network of organizations across the country that operate under Protection and Advocacy for Individuals with Mental Illness, or PAIMI, laws enacted in the 1980s.
Under PAIMI, the organizations receive federal funds to protect the rights of Americans with mental illnesses, including their right to direct their own health care if they are competent to do so.
The chief sponsor of the new federal bill, U.S. Rep. Tim Murphy, a Republican from Pennsylvania, is a psychologist, and the bill has the support of the Treatment Advocacy Center, a nonprofit that says its mission is to eliminate barriers to the treatment of mental illness.
The Treatment Advocacy Center contends that PAIMI groups like the Disability Rights Center have overstepped their bounds and in some cases are advising people with mental illness of their right to refuse treatment, against the wishes of parents and loved ones.
The Treatment Advocacy Center also has clashed with PAIMI groups in several states over legislation that would make it easier to obtain a court order to force people with mental illness to take a prescribed medication or other form of outpatient treatment.
Assisted outpatient therapy
A key portion of Murphy’s bill would withhold increases in grant funding from the five states — Connecticut, Maryland, Massachusetts, New Mexico and Tennessee — that do not allow assisted outpatient treatment, which is a form of involuntary commitment. For people with mental illness to be committed to an inpatient facility against their will, most states require that they be shown to be a danger to themselves or others.
Assisted outpatient treatment laws use a lower standard — usually that the person is too ill to recognize their own need for medical care — to require, by court order, outpatient treatments such as medication.
The Treatment Advocacy Center is a major proponent of assisted outpatient treatment laws, while PAIMI groups have challenged them in several states as unproven programs that infringe on the civil liberties of people with mental health issues.
Murphy’s bill seeks to curtail lobbying by the PAIMI groups and limits their legal advocacy work to the prevention of “abuse and neglect” of Americans with disabilities.
Rocky Nichols, executive director of the Disability Rights Center of Kansas, said the lobbying portion of the bill is redundant because PAIMI groups already are prohibited from using their federal funding for political advocacy.
But he said the other portion related to the PAIMI groups would destroy the Disability Rights Center’s legal advocacy and is an overreaction to unfair allegations against Disability Rights Center staff in other states.
“They’re responding to an anecdote with a nuclear bomb,” Nichols said.
He said the Murphy bill would prevent the Disability Rights Center from doing things unrelated to mental health, like helping children with learning disabilities get special education, investigating possible Medicare fraud by doctors prescribing unnecessary and unwanted treatments for people with disabilities, and advocating for fair housing and employment.
“They’re responding to an anecdote with a nuclear bomb.”- Rocky Nichols, executive director of the Disability Rights Center of Kansas
Mary Jean Billingsley testified against Murphy’s bill at a congressional subcommittee hearing in June on behalf of her adult son, a Johnson County resident with a developmental disability.
Billingsley told the subcommittee that the Disability Rights Center is helping her family fight a city government that is trying to use zoning ordinances to close her son’s group home because some residents don’t want “those people” living in their neighborhood.
“If this bill were law, the PAIMI program would have been prohibited from helping our son with legal advocacy in this housing discrimination case because it is not ‘abuse or neglect,’” Billingsley said.
According to Nichols, 80 percent of the cases DRC worked in 2015 would not fit into the parameters set by Murphy's bill.
The Murphy bill allows the Disability Rights Center to try to intervene in cases of abuse and neglect. But Nichols said the bill would prohibit the Disability Rights Center from interfering between caregivers and people with mental illness, making it a challenge to intervene when the “caregivers” themselves are committing abuse and neglect.
That was the case at the Kaufman House in Newton, where social worker Arlan Kaufman and his wife, Linda, a registered nurse, ran a group home for people with mental illness and abused the residents for 20 years.
State agencies and local law enforcement had received reports of abuse at the house but failed to substantiate them. The Disability Rights Center helped one resident assert her legal rights to leave the facility in 2004, then assisted with an FBI investigation that revealed evidence of decades of sexual and physical abuse.
The Kaufmans were convicted of a slate of criminal abuse charges the following year.
Nancy Jensen, a former resident who calls herself a “survivor” of the Kaufman House, said she tried to raise alarms about what the Kaufmans were doing. But until the Disability Rights Center staff arrived, no one believed her because she had a mental illness and the Kaufmans were respected in their community.
She said one night she harmed herself intentionally because she thought that if the Kaufmans took her to a hospital, the hospital staff would have to help her escape.
“A nurse practitioner was cleaning me up and asked me why I did it,” Jensen said. “Before I had a chance to answer, Linda said, ‘She’s one of ours.’ And that was all the lady needed to know. She walked out.”
Jensen also traveled to Washington, D.C., to testify against the PAIMI provisions in Murphy’s bill.
The concerns that she and others raised already have affected the Kansas congressional delegation’s stance on the bill.
U.S. Rep. Kevin Yoder, a Republican who represents the Kansas City, Kan., area, was one of the bill’s more than 170 co-sponsors in October. But a spokesman for Yoder’s office said he pulled his sponsorship at the end of November after hearing from the Disability Rights Center.
U.S. Rep. Lynn Jenkins, a Republican who represents the rest of eastern Kansas, said she has long been an advocate for mental health reform, but she can’t support the Murphy bill in its current form.
“This bill goes too far in taking away the legal rights of patients — especially by completely dismantling the critically important Protection and Advocacy for Individuals with Mental Illness (PAIMI) program,” Jenkins said via email. “I've had numerous conversations with the author of the bill and the chairman of the committee it's being debated in and am working for revisions.”