NYAPRS Note: In the earlier days of the Trump Administration, NYAPRS expressed the concerns of a broad number of recovery and rights based groups in the nation that new behavioral health policy chief Dr. Elinore McKance-Katz might “unravel some of the great progress we’ve made in person-centered recovery and rehabilitation services and peer support” (https://www.nytimes.com/2017/05/24/health/mental-health-czar-elinore-mccance-katz.html). But, with financial incentives to states that would create or expand coercive ‘Assisted Outpatient Treatment” (AOT) programs and amid efforts to weaken HIPAA protections and the work of Protection and Advocacy Groups, tepid attention to peer support and policies that favored funding more hospital beds than community services, that’s what happened.
In support of public policy shifts that could reform behavioral health policy and link it much more closely to the work of federal Medicaid, Housing and Justice/Rights agencies, several groups recently submitted the following set of recommendations to the Biden transition team. Included is a strong recommendation that people with lived experience be appointed to serve in high leadership roles in SAMHSA and other federal agencies.
Back to Better Behavioral Health
Ron Manderscheid, National Association of County Behavioral Health
and Development Disability Directors
Daniel Fisher, National Coalition for Mental Health Recovery
Harvey Rosenthal, New York Association of Psychiatric Rehabilitation Services
Anthony Fox, Tennessee Mental Health Consumers’ Association
Helga Luest, Manhattan Strategy Group
America is experiencing an unprecedented mental health and addictions crisis. Compounded by COVID-19, mental health and addiction problems are widespread across much of the nation. Deaths of despair from suicide, overdose, and alcohol use are on the rise. Youth, people of color, rural populations, LGBTQ+, and veterans are at disparate risk.
Ø Our current behavioral health system is failing. Services reach only a fraction of those in need. Cost, lack of insurance, stigma, discrimination and mistrust keep people from receiving help. Care is often substandard with little choice or access to comprehensive, coordinated, community and evidence-based, person-centered, trauma informed care. Social determinants and prevention are ignored. Workforce shortages are rampant. There is a reliance on outdated, often coercive institutional approaches – including jails and prisons – where rights violations and spread of infection is high. Financing is inadequate particularly with threats to the ACA and state/federal budgets.
Ø People are suffering due to system failures. Due to the system’s failings, people with behavioral health problems have high rates of poverty, unemployment, homelessness, hunger, school drop outs, incarceration, rights violations, and, most tragically, early mortality. Too many in crisis die in encounters with law enforcement. Families are left desperate to act as caregivers to navigate complex service systems with loss of income and high rates of stress. Our nation suffers from loss productivity and the loss of contributions by millions of Americans.
Ø A new approach focused on recovery and resiliency is necessary – Recovery and resiliency is a comprehensive, public health-based framework with the vision that, with the right supports, people with these conditions can live full, productive lives in the community. Recovery and resiliency are supported by access to health, home, purpose and community. They are guided by coordinated whole health, person-driven care that is relationship and culturally based, trauma-informed, and supported by peers, families, respect, responsibility, and, hope.
Ø We require a national action plan to support recovery and resiliency. This plan should be comprehensive and include a focus on outreach and engagement, access, quality, social determinants, prevention, empowerment, peer and family support, technology, rights protection, youth, veterans, and more.
Ø Leadership is critical to achieving recovery and resiliency. We need leadership -including people with lived experience – who are champions to coordinate a national response and spread recovery and resiliency’s message of healing, hope and strength.
Introduction: To best address the daunting challenges that stem from the traumas of COVID -19, racial injustice, poverty and rising overdose and suicide rates, the Biden Administration should look to new leadership at SAMHSA that is uniquely skilled to lead the way in helping our nation to heal by implementing evidence-based policies that advance the principles of recovery, resilience, peer support and trauma informed care.. For example, people with lived experience of mental illness and trauma should be placed in high leadership roles to bring back meaning and morale to an agency that evidenced “considerable turnover and declining morale’ during the Trump Administration, ranking 417 out of 420 agencies.[1]
Overarching Recommendations for the Biden Administration
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The Administration should create the position of Lead Coordinator for Behavioral Health in the White House, similar to the role for Persons with Disabilities that was adopted under the Obama Administration
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It should set up a Recovery and Resilience task force, consisting of at least 50% of persons with lived experience to develop national policies supporting recovery, peer support and trauma informed responses to COVID- 19.
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The HHS Assistant Secretary for Mental Health and Substance Use should play a critical role in bringing the voice of persons with lived experience and their families to all federal agencies including HHS (SAMHSA, CMS, HRSA, ACL, CDC, ACF), HUD, DOL,D0D/VA, and DoED, which will ensure that policies tied to promoting recovery, wellbeing and community integration that address the social determinants of health are essential components of major federal policy.
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It should ensure that all federal agencies use a trauma informed approach that addresses issues of racial injustice and discrimination based on gender, ethnicity and disability, in recognition of the unanimous bipartisan trauma-informed care resolutions that were approved in 2018 that endorsed this approach to understanding, service provision, and healing.
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PLACE HOLDER Address health, social, criminal justice inequities e.g. more infections and deaths from COVID,
Actions related to the Substance Abuse and Mental Health Services Administration
The Substance Abuse and Mental Health Services Administration (SAMHSA) should:
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Empanel an Advisory Council of persons with lived experience of mental health and/or substance use-related conditions (also known as consumers, survivors, or peers) that would play a fundamental role in the creation and review of all SAMHSA initiatives.
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Ensure that a majority of the members of all State Mental Health Planning Councils be persons with lived experience of mental health and/or substance use-related conditions, and that they meaningfully participate in the allocation of state Mental Health and Substance Abuse Block Grant funds.
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Reduce reliance on institutional care by allocating a minimum of 20% of mental health block grant funding to peer-run respites, to reduce reliance on intuitional care and criminal justice involvement.
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Establish a medical care advisory committee in each state “to advise the Medicaid agency,” ensuring that that at least 51% of committee members be persons with a mental health or other disability
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Expand federal funding for the national peer-run technical assistance centers to cover five regional centers, each responsible for developing advocacy in their region of the country. Resume funding of the groundbreaking Alternatives Conference.
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Expand federal funding of statewide peer-run advocacy organizations to ensure the presence of one such organization per state and providing the inclusion of consumer/survivor/peer voices in the development of state policies.
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Protect federally mandated Protection and Advocacy programs.
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Promote the use of voluntary, peer-driven alternative means of engaging individuals in need and also promote and fund an array of prevention and diversion services that foster alternatives to avoidable hospitalizations and incarceration.
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Promote public education about mental health and trauma related issues and the hope for recovery through peer support and empowerment
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In this period of COVID-19, promote workforce development of peers to extend behavioral health capacity to address the pandemic of isolation, anxiety, depression and trauma.
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Meet SAMHSA’s legislatively required mandate to reduce or eliminate seclusion and restraint.
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Restore the consumer subcommittee for the Center for Mental Health Services (CMHS) National Advisory Council.
COVID and the Americans with Disabilities Act
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Approximately 40% of COVID-19 deaths nationally have been individuals in institutions, such as nursing and adult homes, psychiatric hospitals, assisted living facilities and group homes. While the pandemic has created an urgent need to accelerate discharges from these facilities, the opposite has occurred. Accordingly, SAMHSA, CMS, DOJ, HUD, FEMA and other agencies should act collaboratively and quickly to ensure that states receive technical assistance and guidance concerning steps that they can take to safeguard people with physical and mental health disabilities in congregate living settings, including reducing facilities’ census by equipping the community service system to handle accelerated discharges.
Actions Related to HHS, CMS and CDC
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CMS should issue guidance stating that the Medicaid IMD rule cannot be waived under Section 1115. This long-standing rule prevents Medicaid to be used to further expand institutional care while dramatic gaps in community services remain. Existing law supporting community integration is being undermined by the Trump Administration’s encouragement and approval of waivers allowing state “demonstration” projects that avoid the IMD rule.
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Direct CMS to work with the states to establish policies for self-directed budgeting initiatives for Medicaid and Medicare beneficiaries.
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Direct CMS to adopt ‘Medicaid Re-Entry’ policies that restore Medicaid to individuals 30 days before release from a prison or jail, to ensure that discharge planning and coordination
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Designate behavioral health providers as essential workers who should be considered as a- priority group to receive COVID related vaccines and PPE.
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Direct CMS to reject efforts that would weaken HIPAA privacy and confidentiality rights protection.
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The Administration should reverse the Trump Administration CMS guidance allowing and encouraging states to impose work requirements for Medicaid recipients.
Actions Related to the Department of Justice
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The new Administration’s Department of Justice Civil Rights Division should issue a guidance that should explain the application of the Olmstead decision to the needless institutionalization and incarceration of people with psychiatric disabilities as a result of the failure to provide sufficient community-based services.
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DOJ should work with Congress in support of legislation ensuring adherence to the Olmstead Decision that requires states to provide people with disabilities with the choice and supports to “live, work, and receive services in integrated settings”
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HHS, SAMHSA and DOJ should collaborate and provide guidance on alternatives to police responses to people in emotional distress that include peer and other mental health responders and emergency medical technicians, as well as the kinds of voluntary community-based mental health services to which people should be linked.
Contact Information
Ron Manderscheid, Executive Director, National Association of County Behavioral Health and Development Disability Directors rmanderscheid@nacbhd.org
Daniel Fisher, Executive Director, National Coalition for Mental Health Recovery daniefisher@gmail.com
Harvey Rosenthal, CEO, New York Association of Psychiatric Rehabilitation Services harveyr@nyaprs.org
Anthony Fox, Executive Director, Tennessee Consumers Mental Health Association afox@tmhca-tn.org
Helga Luest, Manhattan Strategy Group Hluest@manhattanstrategy.com