NCD Letter to House Energy and Commerce Committee on Mental Health Reform

August 26, 2015

The Honorable Fred Upton
Energy and Commerce Committee
U.S. House of Representatives
2125 Rayburn House Office Building
Washington, DC 20515

The Honorable Frank Pallone
Energy and Commerce Committee
U.S. House of Representatives
2322A Rayburn House Office Building
Washington, DC 20515

Dear Chairman Upton and Ranking Member Pallone,

I write on behalf of the National Council on Disability (NCD) to commend the members of the Energy and Commerce Committee for their efforts to thoughtfully consider reforms to the mental health services system in this country, and to extend our appreciation for the attention paid to this issue by the Committee over the past several years.

While most recognize that our nation’s patchwork system of mental health care is in need of reform, how to improve the system is the subject of a great deal of healthy and vigorous debate. NCD, in its advisory role to the President, Congress and federal agencies, has published several research reports containing recommendations that we believe would lead to better outcomes for people with psychiatric disabilities and greater opportunities for creating inclusive communities.

It is clear from our decades of exploration into these issues that members of the community with psychiatric disabilities have historically faced high levels of stigmatization, economic and social marginalization and extreme threats to their fundamental right to self-determination and freedom from abuse, neglect and exploitation. Although our awareness of mental health issues has evolved over time, much of the stereotypes and discrimination we’ve identified over the decades sadly persists to this day.

In order to provide timely input into the current effort to bring forward legislation reforming the current system, NCD offers the following recommendations gleaned from our earlier reports that explored these issues in depth. We hope that this abbreviated format is helpful and invite you to reach out to NCD staff to discuss any of these issues further. NCD stands ready to be a resource to the Subcommittee as it continues to pursue policy paths to a more responsive, robust and effective mental health system in America. Please direct any follow-up inquiries or requests for further input to Phoebe Ball, Legislative Affairs Specialist, at pball@ncd.gov. We thank you for your consideration of NCD’s resources and counsel and look forward to participating in this ongoing and important policy conversation. The Council’s recommendations are attached.

Respectfully,
 
Jeff Rosen
Chair

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NCD Recommendations for Mental Health Reform

• In the last session, Rep. Ron Barber introduced the “Strengthening Mental Health in Our Communities Act” H.R. 4574 113th Cong. (2014), which provided a critical roadmap for reform of mental health system by proposing to create opportunities for people with psychiatric disabilities to succeed in integrated settings and to promote access to the community services that have been shown to lead to recovery. NCD urges Congress to revisit this thoughtful legislation as a framework for community-based mental health reform.   
• Legal provisions that permit the use of involuntary treatments such as forced drugging and outpatient commitment are incompatible with the principle of self-determination that underlies among the most precious of civil rights of people with disabilities, and thus should be viewed as inherently suspect. Public policy needs to move in the direction of a completely voluntary community-based mental health system that safeguards human dignity and respects individual autonomy. People with psychiatric disabilities should have a major role informing the direction and control of programs and services designed for their benefit. This central role must be played by people with psychiatric disabilities themselves, and should not be confused with the roles that family members, professional advocates, and others often play when “consumer” input is sought.  
• Mental health treatment should be about healing, not punishment. Accordingly, the use of aversive treatments, including physical and chemical restraints, seclusion, and similar techniques that restrict freedom of movement, should be expressly banned as should electro-convulsive therapy and psycho surgery as unproven and inherently inhumane procedures. Effective humane alternatives to these techniques exist now and should be promoted; for example prevention strategies; de-escalation, crisis plans, identifying triggers, changes to organizational cultures have all been shown to be effective alternatives.
• Federal research and demonstration resources should place a higher priority on the development of culturally appropriate alternatives to the medical and biochemical approaches to treatment of people labeled with psychiatric disabilities, including self-help, peer support, and other consumer/survivor-driven alternatives to the traditional mental health system.
• Eligibility for services in the community should never be contingent on participation in treatment programs. People with psychiatric disabilities should be able to select from a menu of independently available services and programs, including mental health services, housing, vocational training, and job placement, and should be free to reject any service or program. Moreover, in part in response to the Supreme Court’s decision in Olmstead v. L C., state and federal governments should work with people labeled with psychiatric disabilities and others receiving publicly-funded care in institutions to expand culturally appropriate home- and community-based supports so that people are able to leave institutional care and, if they choose, access an effective, flexible, consumer/survivor-driven system of supports and services in the community.
• To assure that parity laws do not make it easier to force people into accepting “treatments” they do not want, it is critical that these laws define parity only in terms of voluntary treatments and services. Additionally, parity laws must not be implemented in violation of the Olmstead decision of the Supreme Court so as to have either the design or effect of increased reliance on institutional settings.
• Far too many children with psychiatric disabilities end up in segregated settings or in the juvenile justice system due to behavioral issues. School and community based mental health and behavior services should play a role in stopping this “school to prison pipeline” and should include: (a) a comprehensive assessment, including determination of the purpose and triggers for the child’s behavior; (b) a school-based intervention plan that relies on positive support, social skills training, a care coordinator, and adjustments as needed to curriculum or schedules; (c) training for school staff and families in implementing the plan; and (d) coordination with non-school providers involved with the child.  
• People with psychiatric disabilities experience heart disease, diabetes, obesity, high blood pressure, and other severe medical problems in disproportionate numbers compared to the general population. Additionally, they often face barriers to accessing appropriate medical care. The provision of appropriate general medical services to meet the complex needs of people with psychiatric disabilities calls for a coordinated system. Such a system would bring together the diverse expertise of medical providers, mental health providers, and consumers, with particular attention to the high rates of mortality and morbidity among this population. Within HHS, SAMHSA should take a leading role in this effort.  
• Housing for people with psychiatric disabilities should be based on consumer choice, provided in integrated settings, and be delinked from mental health programming. Housing should be viewed as a fundamental element of community integration and recovery. Housing people in the housing of their choice promotes long-term stability and increases successful outcomes. Funding should be designated to appropriate federal agencies for shifting from congregate settings to individual, scattered-site houses and apartments in which people are general tenants, not mental health clients.
• All law enforcement, criminal justice, and correctional personnel, including prison guards and probation officers, as well as people working in victim assistance programs, should submit to mandatory training that sensitizes these public servants to recognize certain disabilities; creates awareness of the unique needs of certain groups of people with disabilities; and informs about specific requirements of the Americans with Disabilities Act and other laws that protect the civil and human rights of people with disabilities, including psychiatric disabilities.