National Disability Leadership Alliance Letter Re: HR 3717

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April 23, 2014

The Honorable Fred Upton

The Honorable Joe Pitts

United States House of Representatives

Washington, DC 20515

The Honorable Henry Waxman

The Honorable Frank Pallone

United States House of Representatives

Washington, DC 20515

Dear Mr. Chairman of the Energy and Commerce Committee and Ranking Member Waxman:

Dear Mr. Chairman of the Health Subcommittee and Ranking Member Pallone:

The member organizations of the National Disability Leadership Alliance, a national cross-disability coalition that represents the authentic voices of people with disabilities, are writing to express our firm opposition to the proposed “Helping Families in Mental Health Crisis Act of 2013” (H.R. 3717).

NDLA is a coalition of grassroots organizations of people with disabilities. We value the opportunity to make meaningful choices about our lives, to live and work in the communities of our choice, to have a full voice in all of the policies that affect our lives, and to be treated with dignity and with respect for our civil and human rights.

H.R. 3717 would be a giant step backward for Americans with disabilities. This bill includes provisions that would silence our voices, reduce our choices, compromise our rights and destroy programs that protect our rights and safety. It would increase the use of involuntary commitment by the criminal justice system, coerced psychiatric treatment, and hospitalization, heralding a return to the failed policies of the past. H.R. 3717 would undermine the progress made by people with disabilities under the Americans with Disabilities Act and the Supreme Court’s Olmstead decision towards full participation in society and a life in the community.

We agree with Representative Tim Murphy, the author of H.R. 3717, that the mental health system is inadequate to meet the needs of people with psychiatric disabilities. Representative Murphy is correct that millions of people with psychiatric disabilities, rather than receiving timely help and support, end up homeless or in prison. However, NDLA respectfully submits that many provisions in H.R. 3717 would weaken current federal efforts to address the unmet needs of people with psychiatric disabilities, support community mental health services, and help people who are homeless or incarcerated. Our concerns include the following:

  1. The bill proposes eliminating many innovative programs that help people with psychiatric disabilities to stay out of the hospital and live successfully in the community. The Substance Abuse and Mental Health Services Administration (SAMHSA) Programs of Regional and National Significance (PRNS) would be arbitrarily capped at $150 million, sharply below the $378 million authorized for fiscal year 2014. These programs enable states and localities to develop higher quality, more cost-efficient community services and supports that can be replicated elsewhere. They support people with psychiatric disabilities, family members and underserved populations in service improvement and service delivery. The bill also would terminate all SAMHSA activities not specifically authorized in statute, throwing mental health and substance abuse treatment programs into disarray and eliminating innovative, recovery-based peer-driven programs started since 1992.
  2. The bill would increase hospitalization by partially removing the IMD exclusion, allowing Medicaid to pay for care in state hospitals and private psychiatric hospitals. Removing the IMD exclusion in this way would lead to massive Federal expenditures and an increase in institutional levels of care, rewarding states that rely too heavily on hospitals and promoting needless institutionalization in violation of the ADA and the Olmstead decision. The cost of lifting the IMD exclusion would be better spent on cost-effective community services that reduce hospital use.
  3. The bill would increase involuntary commitment and coercive treatment. The bill includes very broad criteria for psychiatric commitment—inpatient or outpatient—and requires states to adapt these criteria in order to receive their Mental Health Block Grant allocation. It also promotes involuntary outpatient commitment, euphemistically called “assisted outpatient treatment.” Outpatient commitment can provide intensive services, but only after a person has deteriorated and has been mandated by a judge to comply with treatment orders. Research and field experience strongly indicate that when people know or believe they are going to be subject to coercive treatment, they become even more resistant to seeking services. These interventions are humiliating, dehumanizing, and traumatizing to people with psychiatric disabilities. Coerced treatment after crisis is no substitute for effective relationship-based outreach and engagement, prevention and diversionary initiatives, and the voluntary services, supports and rehabilitation services that help people to improve their health, avert crises, and recover. Federal policy should support and incentivize such timely, voluntary services, not coercion.
  4. The bill proposes to essentially eliminate SAMHSA as it currently exists by transferring decision-making to yet another costly federal bureaucracy with yet another assistant secretary. The assistant secretary would have extraordinary control over SAMHSA agencies and conduct grant-making, technical research and evaluation that belong at the agency level. The cost would be paid by using up to 5 percent of the Community Mental Health Services Block Grant, reducing support to states. SAMHSA would have to notify Congress a month in advance of every grant award decision, calling the fairness and objectivity of federal grant-making into question.
  5. The bill singles out people with mental disabilities for discriminatory treatment under HIPAA and FERPA. This decreased protection allows a health provider to override a patient’s objection to sharing privacy-protected information with family, personal representatives, and others providing financial support or care. This decreased protection would apply not only to people with mental illnesses, but also to people with developmental or learning disabilities such as autism spectrum disorder, ADHD, intellectual disability, and many specific learning disabilities. This discriminatory change could discourage people from seeking help, and is unneeded, as HIPAA and FERPA already include exceptions that allow disclosure for safety or emergency circumstances.
  6. The bill would all but eliminate the Protection and Advocacy (P&A) system. Finally, this bill would eviscerate the rights and privacy protections for people with mental illnesses enshrined in the federally mandated P&A system, which is the largest provider of legal advocacy services to people with disabilities in the United States. The dissolution of civil rights protections will threaten the hope and well-being of people and families struggling to regain their lives.

NDLA thanks you for your leadership and for careful consideration of the concerns we have raised. We invite you to contact Raymond Bridge at (703) 883-7710 ( media@ncmhr.org) for additional information.

Sincerely,

American Association of People with Disabilities

ADAPT

Association of Programs for Rural Independent Living

Autistic Self Advocacy Network

Little People of America

National Council on Independent Living

National Association of the Deaf

Not Dead Yet

National Coalition for Mental Health Recovery

United Spinal Association