We want you to help choose the top priorities from among the goals listed below so we can most effectively advocate on Hill Day, July 9, 2019. These priorities will be the basis of our national and state-level advocacy during the coming year. Whether you plan to attend Hill Day or not, we would love to get your input!

By Monday, June 10, please rank your to priorities from #1 to #6 by filling in the box next to the priorities you would like us to focus on. Please share this document with your networks; we would like to receive as much feedback as possible.

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* 1. Please rank your top advocacy priorities from #1 to #6. To see a description of each of the priorities, see below.

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* 2. Do you have any comments or suggestions in regards to these advocacy priorities?

Policy Descriptions

Priority 1: Ensure meaningful and quantifiable peer participation in the development of national and state mental health policies.

Significance of the Priority: When decisions are made on policy and practices at the federal and state levels, it is essential to include the voices of individuals who have firsthand experience of mental health and/or substance abuse treatment programs and related services, because these decisions will directly impact their recovery and fundamental human rights.

Suggested Actions:

-Create a Substance Abuse and Mental Health Services Administration (SAMHSA) committee of persons with lived mental health and/or substance abuse experience (also known as consumers, survivors, or peers) that would fully participate in the creation of all SAMHSA initiatives. The committee members would be responsible for all appointments to the committee.

-Ensure that a majority of the members of all state mental health planning councils be persons with lived mental health and/or substance abuse experience, and that they meaningfully participate in the allocation of state Mental Health and Substance Abuse Block Grant funds.

-Further define Code of Federal Regulations 42, Section 431.12, which establishes a medical care advisory committee “to advise the Medicaid agency,” by stating that at least two committee members be persons with lived experience of a mental health condition.       

-Expand federal funding of the national peer-run technical assistance centers to cover five regional centers, each responsible for community organizing and advocacy in a region of the country. The major responsibility of these technical assistance centers would be the nurturing and continued support of statewide peer-run advocacy organizations.

-Expand federal funding of statewide peer-run advocacy organizations to cover one such organization per state, ensuring that each state include consumer/survivor/peer voices in the development of state policies.

Priority 2: Educate the general public, mental health service providers, and legislators about the lives, needs, and goals of individuals with psychiatric labels, and about the vital importance of peer supports to help people recover their lives in the community.

Significance of the Priority:
Transforming all levels of mental health care will require decision makers, service providers, and the general public to understand the importance of recovery values. Peers often feel devalued when they are hired to work in the mental health system; but, by educating non-peer staff about recovery, peers can help transform the system.

Suggested Action:

Create a peer-driven evaluation of the progress toward a recovery-based behavioral health system. Transforming the behavioral health system depends on quality improvement initiatives inspired, created, and implemented by the participation of peers at all levels.

Priority 3: Increase funding for peer-run crisis services as alternatives to involuntary treatment, and appropriate funding to support the advancement of the peer workforce.

Significance of the Priority: Studies show that peers are often able to engage persons with lived experience of the mental health system more effectively than non-peers. While involuntary treatment is often traumatic, voluntary alternatives promote recovery.

Despite the recent expansion of the peer workforce, peer supporters report numerous barriers to workforce participation. These barriers include limiting the role/value of peers even when their “caseloads” include a significant percentage of individuals with complex needs; limiting opportunities for advancement, professional development, and/or wage increases based on comparable tasks or skills; and other forms of significant workforce discrimination. In addition, there should be easy steps up from entry-level positions—which are critical to beginning the process of reintegration into the community and recovering the ability to work—to positions of greater responsibility. Also, funding cost-efficient and effective drop-in centers, clubhouses, peer-owned agencies, and warm lines is essential in order to include peers at all stages of recovery.

Suggested Actions:

-SAMHSA should set aside 20% of Mental Health Block Grant funding for peer-run crisis respites.

-SAMHSA should fund five peer-run crisis respite pilots nationally, with additional funding for studies to add to the research base.

-The Centers for Medicare & Medicaid Services (CMS) should not eliminate the IMD (Institutions for Mental Diseases) exclusion:
The IMD exclusion prohibits the use of Medicaid financing for care provided in mental health and substance use disorder residential treatment facilities larger than 16 beds. Eliminating the IMD exclusion would pay for more psychiatric beds with dollars that should go to community supports. The cost increases would be exponential; the beds could or would not remain empty; and the standard of care would not support people who are working to reintegrate into the community and recover.

-Advocate to pass the Disability Integration Act (H.R. 555/S.1117 ), assuring that states and other LTSS (Long-Term Services and Supports) funders provide services and supports in a manner that allows individuals with disabilities to live in the most integrated settings (including their own homes), have maximum control over their services and supports, and lead independent lives.

Priority 4: Fund basic human needs for individuals with mental health conditions, such as housing, employment, and income support.

Significance of the priority: Recovery of a full life in the community requires meeting basic human needs.

Suggested Actions:

-The Department of Housing and Urban Development (HUD) should increase funding for affordable, safe, unbundled housing—that is, housing that does not require people to get clean and sober or accept mental health services in order to get housing, such as Housing First programs—through expansion of Section 8 vouchers.

-Provide a basic income, and increase SSI and SSDI to be aligned with the cost of living, with more gradual withdrawal when people return to work.

-Increase supported employment, such as Individual Placement and Support (IPS).

Priority 5: Protect the human rights of persons labeled with mental health conditions.

Significance of the priority: Individuals cannot begin the recovery process while suffering significant human rights violations.

Suggested Actions:

-Support passage of the Transformation to Competitive Employment Act (H.R. 873, S. 260), which would end the subminimum wage for workers, especially in sheltered workshops.

-Work with the Bazelon Center for Mental Health Law to end involuntary treatment and coercive treatments, such as physical and chemical restraints, in all institutional settings, such as hospitals, nursing homes, and schools

-Strongly advocate that the U.S. Congress ensure that the Justice Department enforce the protections guaranteed under the Americans with Disabilities Act (ADA) and the Olmstead decision.

-Support the privacy protections in the Health Insurance Portability and Accountability Act of 1996 (HIPAA), together with the implementing regulations found at 45 C.F.R. Parts 160 and 164 (HIPAA Rules).

-Counter the recommendation by the Department of Health and Human Services (HHS), Office of Civil Rights (OCR), to modify the existing HIPAA rules in ways that would weaken their important privacy protections.

-Support protection of the Affordable Care Act (ACA) against the Justice Department’s recommendations, such as rescinding ACA protection of persons with pre-existing conditions.

-Work for Senate ratification of the U.N. Convention on the Rights of Persons with Disabilities (CRPD).

Priority 6: Address the devastating impact of untreated trauma.

Significance of the priority: The impact of trauma on behavioral health has become increasingly apparent in recent years, with studies suggesting that over 90% of people with psychiatric diagnoses identify themselves as survivors of trauma. Unresolved trauma as a result of Adverse Childhood Experiences (ACEs) can negatively impact development across the life span and intergenerationally; and contribute to substance misuse, child abuse, poverty, and incarceration.

Suggested Actions:

-The Assistant Secretary for Mental Health and Substance Use should immediately create the Interagency Taskforce on Trauma established by the SUPPORT Act.

-Congress should create a grant program to provide funding to local trauma-informed coalitions—composed of government agencies, non-profit organizations, and the private sector—established to develop and implement a comprehensive strategic plan to address childhood and historical trauma in their communities.

-Congress should give local trauma-informed coalitions greater flexibility to pool funds from various federal grant programs so they can implement and fund a single comprehensive and coordinated trauma-informed strategy.