The Autistic Self Advocacy Network is alarmed by the House Energy and Commerce Committee’s passage of H.R. 2646, the so-called “Helping Families in Mental Health Crisis Act. Despite recent revisions, H.R. 2646 continues to focus on interventions that isolate and stigmatize people with mental health disabilities. It was not only written without significant participation by people with mental health disabilities but also would exclude people with mental health disabilities from positions of leadership in mental health programs. We urge Congress to consider alternatives to H.R. 2646 that focus on empowering people with mental health disabilities, combating stigma, and promoting community integration.
- H.R. 2646 would make mental health grant funding to states conditional on their acceptance of assisted outpatient treatment (AOT). The revised bill would extend federal grants that would encourage states to expand coercive, court-ordered outpatient treatment programs. These programs worsen mental health care by entangling court systems in decisions that should be between individuals and their treatment providers. These coercive strategies not only undermine individual autonomy but also make it impossible for people to discontinue “treatment” that is harmful or ineffective and, ultimately, discourage people from voluntarily seeking out the services that work for them.
- H.R. 2646 would create new administrative burdens for home health care and personal attendant services for people with disabilities. The revised bill would reduce funding for home-based care services for people with disabilities in states that do not use Electronic Visit Verification (EVV) systems to track those services. This requirement would create additional administrative hurdles for people with disabilities seeking to self-direct the services they receive under Medicaid.
- H.R. 2646 would subsidize long-term institutionalization of children and young adults. The revised bill would extend federal Medicaid funding to medical services provided to children and young adults under age 21 who have been placed in a psychiatric hospital – services that have traditionally been the responsibility of states to provide – regardless of length of stay. This subsidy would reduce state Medicaid programs’ incentives to avoid long-term psychiatric hospitalization of children and young adults, even though long-term hospital stays are known to be both harmful and inconsistent with young people’s right to be integrated into the community.
- H.R. 2646 would not ensure that people with psychiatric disabilities are represented in the programs that it would authorize. The bill would require that only two of the fourteen non-Federal public members of the Interdepartmental Serious Mental health disabilities Coordinating Committee (ISMICC) have the lived experience of having a mental health disability. Moreover, the bill does not meaningfully include stakeholders and self-advocates with mental health disabilities in the staff of National Mental Health and Substance Use Policy Laboratory, or among the stakeholders that the staff must consult with. We believe that including stakeholders and decision-makers who themselves have mental health disabilities is crucial if there is to be any effective change to our nation’s mental health system.
- H.R. 2646 promotes outdated ideas about the capacity of individuals with mental health disabilities—including its apparent promotion of plenary guardianship for individuals with mental health disabilities—and makes no mention of available alternatives to guardianship, such as supported decision-making. Despite the bill’s acknowledgment that the “vast majority” of individuals with mental health disabilities are “capable of understanding their health disabilities and caring for themselves,” the recently revised bill includes findings that discuss legal guardianship as an appropriate means of enabling caregivers to facilitate care and support individuals who are experiencing temporary challenges with making informed decisions. It does not, however, include findings regarding supported decision-making and other models to help people make decisions without legal guardianship. These models enable a person with a disability to choose a supporter to help them coordinate care, understand their health care options, communicate with health providers, and make decisions regarding care.
Legal guardianship dramatically curtails the legal and social rights of people with disabilities and, often, exposes people with mental health disabilities to heightened risk of abuse, neglect, or financial exploitation. Guardianship is also not necessary to enable supporters to help coordinate care, access health information, or assist a person who is temporarily in need of additional support to make health decisions. Promoting guardianship as a solution to these challenges without considering any other alternatives is inconsistent with the goal of fighting stigma and promoting inclusion of people with disabilities.
- The draft bill would urge the Department of Health and Human Services to revisit (or “clarify”) its existing HIPAA regulations in a way that could potentially expand access to protected health information without the consent of a person with a mental health disability. HIPAA already allows healthcare providers to disclose protected health information with consent, in emergency situations, and when the provider believes that the person poses a threat to the health or safety of themselves or others. This includes situations in which a person’s safety is imminently threatened because the person’s daily needs are not being met. Although we agree that caregivers and providers could benefit from additional guidance and training on what disclosures HIPAA permits, we do not believe that additional regulations are necessary.
We urge you to consider revisions that would address these concerns, or alternatives to this troubling mental health bill. For further information please contact Samantha Crane, Director of Legal and Public Policy, at scrane@autisticadvocacy.org.