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President's New Freedom
Commission on Mental Health

Achieving the Promise: Transforming Mental Health Care in America

Goal 2 - Mental Health Care Is Consumer and Family Driven

Part 2

Achieving the Goal

Recommendation

2.1 Develop an individualized plan of care for every adult with a serious mental illness and child with a serious emotional disturbance.

Develop Individualized Plans of Care for Consumers and Families

The Commission recommends that each adult with a serious mental illness and each child with a serious emotional disturbance have an individualized plan of care. These plans of care give consumers, families of children with serious emotional disturbances, clinicians, and other providers a genuine opportunity to construct and maintain meaningful, productive, and healing partnerships. The goals of these partnerships include:

  • Improving service coordination,

  • Making informed choices that will lead to improved individual outcomes, and

  • Ultimately achieving and sustaining recovery.

The plans should form the basis for care that is both consumer centered and coordinated across different programs and agencies. A consumer's plan of care should describe the services and supports they need to achieve recovery. The funding for the plan would then follow the consumer, based on their individualized care plan. For those consumers who need multiple services and supports, the burden of coordination and access to care should not rest solely on them or on their families, but rather it should be shared with service providers.

Providers should develop these customized plans in full partnership with consumers.

Consumer needs and preferences should drive the type and mix of services provided, and should take into account the developmental, gender, linguistic, or cultural aspects of providing and receiving services. Providers should develop these customized plans in full partnership with consumers, while understanding changes in individual needs across the lifespan and the obligation to review treatment plans regularly. For consumers and families, the system should be easy to understand and navigate. The Commission recommends that SAMHSA convene a consensus panel to examine and explore developing models to guide individual plans of care.

Where a range of services are available, increased opportunities forchoice will create a more viable marketplace for mental health care and provide a greater level of satisfactionby giving consumers and families control over important funding decisions that affect their lives. A recent Medicaid Cash and Counseling Demonstration waiver program that focuses on people with physical disabilities, developmental disabilities/mental retardation, and older adults confirms what many have long suspected. The evaluation, jointly funded by HHS and the Robert Wood Johnson Foundation, found that, when compared to traditional agency-directed personal care services, consumer-directed services resulted in:

  • Higher client satisfaction,

  • Increased numbers of needs being met, and

  • Equivalent levels of health and safety in a large population of people with disabilities.85

In this demonstration, these selected Medicaid waiver program beneficiaries choose their own support services (e.g., personal care attendants and adaptive equipment) from an approved list. The Commission sees the value in undertaking a similar demonstration waiver program to evaluate the potential benefits for people with mental illnesses.

An exemplary program that expressly targets children with serious emotional disturbances and their families, Wraparound Milwaukee strives to integrate services and funding for the most seriously affected children and adolescents. (See Figure 2.1.) Most program participants are racial or ethnic minority youth in the child welfare and juvenile justice systems. Wraparound Milwaukee demonstrates that the seemingly impossible can be made possible: children's care can be seamlessly integrated. The services provided to children not only produce better clinical results, reduce delinquency, and result in fewer hospitalizations, but are cost-effective.86

Each consumer or child's family should receive the technical assistance necessary to develop the individual plan of care, including:

  • Necessary information about services and supports,

  • Opportunities to network with other consumers and families, and

  • Participation in a full partnership with providers on decisions about treatment and services.

Youth with serious emotional disturbances should participate in meetings to ensure that their voices are heard in educational decisions that affect their school-based intervention and placement, particularly in the student's Individualized Education Program (IEP). To succeed, the plan must also be supported by the proposed Comprehensive State Mental Health Plan. (See Recommendation 2.4.)

Figure 2.1. Model Program: Integrated System of Care for Children with Serious Emotional Disturbances and Their Families

Program

Wraparound Milwaukee

Goal

To offer cost-effective, comprehensive, and individualized care to children with serious emotional disturbances and their families. The children and adolescents that the program serves are under court order in the child welfare or juvenile justice system; 64% are African American.

Features

Provides coordinated system of care through a single public agency (Wraparound Milwaukee) that coordinates a crisis team, provider network, family advocacy, and access to 80 different services. The program's $30 million budget is funded by pooling child welfare and juvenile justice funds (previously spent on institutional care) and by a set monthly fee for each Medicaid-eligible child. (The fee is derived from historical Medicaid costs for psychiatric hospitalization or related services.)

Outcomes

Reduced juvenile delinquency, higher school attendance, better clinical outcomes, lower use of hospitalization, and reduced costs of care. Program costs $4,350 instead of $7,000 per month per child for residential treatment or juvenile detention.86

Biggest challenge

To expand the program to children with somewhat less severe needs who are at risk for worse problems if they are unrecognized and untreated.

How other organizations can adopt

Encourage integrated care and more individualized services by ensuring that funding streams can support a single family-centered treatment plan for children whose care is financed from multiple sources.

Sites

Milwaukee and Madison, Wisconsin; Indianapolis, Indiana; and the State of New Jersey

Recommendation

2.2 Involve consumers and families fully in orienting the mental health system toward recovery.

Involve Consumers and Families in Planning, Evaluation, and Services

Through consumer and family member public testimony, comments, and letters, the Commission is convinced of the need to increase opportunities for consumers and family members to share their knowledge, skills, and experiences of recovery. Recovery-oriented services and supports are often successfully provided by consumers through consumer-run organizations and by consumers who work as providers in a variety of settings, such as peer-support and psychosocial rehabilitation programs.

Consumers who work as providers help expand the range and availability of services and supports that professionals offer. Studies show that consumer-run services and consumer-providers can broaden access to peer support, engage more individuals in traditional mental health services, and serve as a resource in the recovery of people with a psychiatric diagnosis.18 Because of their experiences, consumer-providers bring different attitudes, motivations, insights, and behavioral qualities to the treatment encounter.87; 88

In the past decade, mental health consumers have become involved in planning and evaluating the quality of mental health care and in conducting sophisticated research to affect system reform. Consumers have created and operated satisfaction assessment teams, used concept-mapping technologies, and carried out research on self-help, recovery, and empowerment.89; 90

Local, State, and Federal authorities must encourage consumers and families to participate in planning and evaluating treatment and support services. The direct participation of consumers and families in developing a range of community-based, recovery-oriented treatment and support services is a priority.

Consumers and families with children with serious emotional disturbances have a key role in expanding the mental health care delivery workforce and creating a system that focuses on recovery. Consequently, consumers should be involved in a variety of appropriate service and support settings. In particular, consumer-operated services for which an evidence base is emerging should be promoted.

Recommendation

2.3 Align relevant Federal programs to improve access and accountability for mental health services.

Realign Programs to Meet the Needs of Consumers and Families

The Federal government is the largest single payer for mental health and supportive services, including health care, employment, housing, and education. To be effective, Federal funding and regulatory systems must make the necessary range of services, treatments, and supports accessible.

The Commission has come to the emphatic conclusion that transforming mental health care in America requires at least two fundamental undertakings:

  • Relevant Federal programs that determine eligibility, policy, and financing in the core areas of health care, housing, employment, education, and child welfare must examine their potential to better align their programs to meet the needs of adults and children with mental illnesses. Because of the exceedingly high rates of mental illnesses among incarcerated populations, this examination must also include Federal policy, program, and financing roles in the criminal and juvenile justice systems.

  • The President's vision is to ensure that all Americans with disabilities have opportunities to live, work, learn, and participate fully in the community. Federal agencies can greatly help to realize this vision by

Federal expenditures and policies have a tremendous impact on consumers and families. Particularly at the Federal level, leadership must increase opportunities for consumers and families, and develop innovative solutions.

The Federal government must also provide leadership in demonstrating accountability for funding approaches and in removing regulatory and policy barriers. The funding and regulatory systems should advance the goal of making the mental health system consumer- and family-driven and should encourage choice and self-determination.

In a transformed system, the key goals of a revised Federal agenda for mental health would include:

  • Clarifying and coordinating regulations and funding guidelines that are relevant to people with mental illnesses for housing, vocational rehabilitation, criminal and juvenile justice, social security, and education to improve access and accountability for effective services; and

  • Providing guidance to States to create a Comprehensive State Mental Health Plan that would address the same fragmentation and coordination issues at the State level. (See Recommendation 2.4.)

As States increase their levels of interagency coordination, the Federal agencies would provide greater flexibility in how funds could be used.

The Commission recommends that HHS take the lead responsibility to develop a cross-Department mental health agenda with the goal of better aligning Federal policy on mental health treatment and support services across agencies and reducing fragmentation in services. The HHS Secretary should require that key agencies and programs that serve people with serious mental illnesses coordinate their responsibilities, including:

  • Substance Abuse and Mental Health Services Administration (SAMHSA),

  • National Institutes of Health (NIH),

  • Centers for Medicare and Medicaid Services (CMS),

  • Administration for Children and Families (ACF),

  • Social Security Administration (SSA),

  • U.S. Department of Veterans Affairs (VA),

  • U.S. Department of Education (ED),

  • The juvenile and adult criminal justice systems,

  • Child welfare,

  • Vocational rehabilitation, and

  • Housing.

Align Federal Financing for Health Care

The two largest Federal health care programs - Medicare and Medicaid - strongly influence the nature and characteristics of the health care reimbursement system. How States use Medicaid to finance mental health care varies greatly. All too often, the interplay of existing policies, waivers, and exemptions can cause the collaboration between the State mental health authorities and State Medicaid programs directors to be inconsistent.

Beneficiaries must be able to exercise choice, self-direction, and control over their health care services. To provide this choice, critical issues must be addressed so that Federal funding programs and State resources are coordinated. In transforming the health care financing system, the various characteristics and unique local needs must be addressed.

Both CMS and SSA recognize the challenges to modernizing the current delivery system for people with disabilities, as well as the fiscal constraints under which States operate. New ways of doing business, innovation, and a willingness to explore viable options will lead the way to improving the system.

The Balanced Budget Act of 1997 allows States to extend Medicaid coverage to individuals with disabilities whose earned income is low, but still above the Federal Poverty Guidelines by up to 250%. This action directly benefits individuals with disabilities who could not ordinarily qualify for Medicaid. By setting the net income eligibility at this level, States can provide Medicaid coverage to more individuals with disabilities who might not be able to be employed.

The Commission recognizes that Medicaid demonstration projects are an essential tool to inform policy makers and Federal payers about the effectiveness and fiscal impact of health care innovations. Therefore, the Commission recommends introducing legislation to implement those New Freedom Initiative Demonstration proposals included in the President's Fiscal Year 2004 Budget.

Specifically, these demonstrations include:

  • "Money Follows the Individual" Rebalancing,

  • Community-based alternatives for children who are currently residing in psychiatric residential treatment facilities, and

  • Respite care services for caregivers of adults with disabilities or long-term illnesses, and respite care for caregivers of children with substantial disabilities.

Demonstration: "Money Follows the Individual" Rebalancing

This demonstration creates a system of flexible financing for long-term services and supports that enables available funds to move with the individual to the most appropriate and preferred setting as the individual's needs and preferences change. To the participant, the movement of funds is seamless.

This project would help States develop and adopt a coherent strategy to make their long-term care systems more responsive to the needs and desires of its citizens, more cost-effective, less dependent on institutional settings, and more responsive to the ADA. This demonstration would also support State initiatives to increase self-direction and comply with the Olmstead decision.


Rebalancing
means adjusting a State's Medicaid programs and services to achieve a more equitable balance between the proportion of total Medicaid long-term support expenditures used for institutional services (i.e., nursing facilities and intermediate care facilities - mental retardation) and the proportion of funds used for community-based support under its State Plan and waiver services. A balanced, long-term support system offers individuals a reasonable array of options, including meaningful community and institutional choices.

Demonstration: Community-based Alternatives for Children in Psychiatric Residential Treatment Facilities

Over the last decade, psychiatric residential treatment facilities have become the primary provider for children with serious emotional disturbances who require an institutional level of care. The Medicaid program provides Federal matching funds for inpatient psychiatric services for children under age 21 in hospitals or in psychiatric residential treatment facilities. A primary tool for States to develop community-based alternatives to institutional settings, such as hospitals, is the Home and Community-based Services waiver authority under Section 1915(c) of the Social Security Act.

However, since psychiatric residential treatment facilities are not explicitly listed as an institution in the Act, this tool is not available to States.

Extending home- and community-based services (HCBS) as an alternative to residential treatment facilities could allow children to receive treatment in their own homes, surrounded by their families, at a cost per child that would be less than the cost of institutional care. However, no analysis of the effectiveness or efficiency of such an approach exists. While limiting Federal financial exposure by capping total participation, a demonstration would allow CMS to develop reliable cost and utilization data to evaluate the impact of Medicaid waiver services on the effectiveness of community placements for children with serious emotional disturbances. The data would also serve as a useful predictor of what would be expected if permanent authority is granted for the HCBS waiver as an alternative to psychiatric residential treatment centers.

Demonstration: Respite Care Services for Caregivers

When the demands of caregiving overwhelm caregivers, people with disabilities may be forced to leave their homes for a less desirable, more restrictive environment. Fortunately, respite services that provide temporary relief for caregivers can enable individuals with disabilities to remain in their homes and communities.

Although respite care can take many forms, its essential purpose is to provide community-based, planned or emergency short-term relief to family caregivers, alleviating the pressures of ongoing care. It is frequently provided in the family home. Without respite care, family caregivers who are forced to stay at home to provide care experience significant stress, loss of employment, financial burdens, and marital difficulties. Many caregivers report that it is unsafe to leave their family members at home alone; they are unable to leave their family members with another relative; and they face barriers in accessing generic day care or companion services. A demonstration would expand the ability of States to develop respite care service alternatives outside the scope of an HCBS waiver and test the financial impact of this service.

The Commission also recommends that CMS work with relevant HHS components and other Federal agencies to explore and propose demonstrations for future fiscal years to address the following areas:

  • The Institutions for Mental Diseases (IMDs) exclusion be addressed within Medicaid reform efforts, including issues such as Home and Community-based Services Demonstration as an alternative to IMDs or a redefinition of IMDs and the services funded, and

  • Self-directed services and supports for people with mental illnesses.

Make Supported Employment Services Widely Available

Every adult served in the mental health system and every young person with serious emotional disturbances making the transition from school to work must have access to supported employment services if they are to participate fully in society.

Most vocational rehabilitation services are ineffective for the small proportion of people with mental illnesses who manage to get them.

Disturbingly, most vocational rehabilitation services are ineffective for the small proportion of people with mental illnesses who manage to get them. Traditional vocational services that most vocational rehabilitation programs offer are far less effective for people with serious mental illnesses than a widely researched approach known as supported employment. Supported employment programs assign an employment specialist to the treatment team. That specialist helps consumers by conducting assessments and rapid job searches, and by providing ongoing, on-the-job support. Studies of supported employment show that 60% to 80% of people with serious mentally illnesses obtain at least one competitive job (compared to 19% who remained in traditional vocational programs) - a clear success rate.54 The cost of supported employment is similar to that of traditional vocational services. (See Figure 2.2.)

Figure 2.2. Model Program: Supported Employment for People with Serious Mental Illnesses

Goal

To secure employment quickly and efficiently for people with mental illnesses. Alarmingly, only about one-third of people with mental illnesses are employed,53 yet most wish to work.

Features

An employment specialist on a mental health treatment team. The employment specialist collaborates with clinicians to make sure that employment is part of the treatment plan. Then the specialist conducts assessments and rapid job searches and provides ongoing support while the consumer is on the job.

Outcomes

In general, about 60% to 80% of those served by the supported employment model obtain at least one competitive job, according to findings from three randomized controlled trials in New Hampshire; Washington, DC; and Baltimore.55 Those trials find the supported employment model far superior to traditional programs that include prevocational training. The cost of the supported employment model is no greater than that for traditional programs, suggesting that supported employment is cost-effective.

Biggest challenge

To move away from traditional partial hospital programs, which are ineffective at achieving employment outcomes but are still reimbursable under Medicaid.

How other organizations can adopt

Restructure State and Federal programs to pay for evidence-based practices, such as Individual Placement and Support (IPS)55 that help consumers achieve employment goals rather than pay for ineffective, traditional day treatment programs that do not support employment.

Sites

30 States in the United States, Canada, Hong Kong, Australia, and 6 European countries


Even though supported employment is effective, few people with mental illnesses receive these services. One reason is that individuals with psychiatric disabilities often receive services that may be called "supported employment," but are supported employment in name only. These vocational services lack the key ingredients that make supportive employment effective. Additionally, State-Federal vocational rehabilitation services are funded for limited time periods and do not pay for ongoing job support (other than a "post-employment services" status that is rarely used). Similarly, Medicaid does not reimburse for most vocational rehabilitation services. Thus, the lack of available financing mechanisms and the inadequately implemented supported employment models are barriers that prevent people with mental illnesses from benefiting from supported employment.

Studies of supported employment show that 60% to 80% of people with serious mentally illnesses obtain at least one competitive job - a clear success rate.

The Commission recommends strengthening and expanding supported employment services, such as Individualized Placement and Support,55 to all people with psychiatric disabilities. The system must make opportunities for supported employment available for anyone who wants to participate. To make supported employment services more widely available, the Commission urges CMS to provide technical assistance to States on how to effectively use the Medicaid

Rehabilitation Services Option to fund those components of supported employment that are consistent with Medicaid policy. The Commission encourages the Social Security Administration to evaluate the possibility of removing disincentives to employment in both the SSI and SSDI programs.

The Commission encourages States to use Medicaid Buy-In legislation to extend Medicaid coverage to disabled individuals who are working.

The widespread use of supported employment, coupled with the reduced disincentive to employment, could result in productive work and independence for consumers while accruing enormous cost-savings in Federal disability payments. Additionally, CMS and SSA should determine the feasibility of using savings accrued by SSA as beneficiaries go back to work to offset increased State and Federal Medicaid costs.

CMS and SSA should launch a national campaign to encourage States to use this powerful incentive to employment. The campaign should be designed to:

  • Reduce barriers to implementation;

  • Improve SSA and CMS communication; and

  • Promote education and outreach to consumers, youth, families, vocational rehabilitation counselors, and community rehabilitation programs.

The Commission recommends developing a Federal-State interagency initiative involving all Federal agencies that are charged with addressing mental health, employment, and disability issues. Through this initiative, agencies can:

  • Collaborate to inventory and assess existing Federal programs,

  • Better coordinate the administration of these programs, and

  • Promote interagency demonstration projects that are designed to eliminate employment barriers and increase employment opportunities for youth and adults with mental illnesses.

Make Housing with Supports Widely Available

The Commission believes it is essential to address the serious housing affordability problems of people with severe mental illnesses who have extremely low incomes. Progress toward this objective will significantly advance the goal of ending chronic homelessness and will have a great impact on the crisis of inadequate housing and homelessness for people with severe mental illnesses.

Research shows that consumers are much more responsive to accepting treatment after they have housing in place.91 People with mental illnesses consistently report that they prefer an approach that focuses on providing housing for consumers or families first. However, affordable housing alone is insufficient. Flexible, mobile, individualized support services are also necessary to support and sustain consumers in their housing. Many consumers have troubled tenant histories and higher rates of incarceration - both of which can lead to long-term ineligibility for Federal housing programs, such as Section 8 vouchers and public housing. In addition, access to ongoing support services is limited

Research shows that consumers are much more responsive to accepting treatment after they have housing in place.

Research and demonstration programs have documented the effectiveness of the supportive housing model for people with serious mental illnesses.92; 93 Research has also found that permanent supportive housing can be cost effective when compared to the cost of homelessness.94 For example, a University of Pennsylvania study found that homeless people with mental illnesses who were placed in permanent supportive housing cost the public $16,282 less per person per year compared to their previous costs for mental health, corrections, Medicaid, and public institutions and shelters.92

The Commission recommends making affordable housing more accessible to people with serious mental illnesses and ending chronic homelessness among this population. To begin, in partnership with the Interagency Council on Homelessness (comprising 20 Federal agencies), the Department of Housing and Urban Development (HUD) should develop and implement a comprehensive plan designed to facilitate access to 150,000 units of permanent supportive housing for consumers and families who are chronically homeless. During the next ten years, this initiative should develop specific cost-effective approaches, strategies, technical assistance activities, and actions to be implemented at the Federal, State, and local levels. Expanding and ensuring a continuum of housing services would represent positive elements to include in such a plan. The Commission recommends that individuals who have a history of serious mental illnesses be given fair access to these 150,000 units of supportive housing.

The Commission recommends that States and communities commit to the goal of ending chronic homelessness and develop the means to achieve it.

The Commission recognizes that national leadership must make a concerted effort to address the problem of homelessness and lack of affordable housing among people with serious mental illnesses. The Commission urges HUD to collaborate with HHS, VA, and other relevant agencies to provide leadership to States and local communities to improve housing opportunities for this population. HUD should aggressively pursue administrative, regulatory, and statutory changes to existing mainstream housing programs; e.g., Section 811 Supportive Housing. Input from stakeholders to identify existing barriers to accessing housing should be an integral part of HUD's considerations.

Address Mental Health Problems in the Criminal Justice and Juvenile Justice Systems

Providing adequate services in correctional facilities for people with serious mental illnesses who do need to be there is both prudent and required by law. The Eighth Amendment of the U.S. Constitution protects the right to treatment for acute medical problems, including psychiatric problems, for inmates and detainees in America's prisons and jails. Professional organizations have published guidelines for mental health care in correctional settings and some States have implemented them.69; 95-97

All too often, people are misdiagnosed or not diagnosed with the root problem of mental illnesses. It is important to keep adults and youth with serious mental illnesses who are not criminals out of the criminal justice system. Too often, the criminal justice system unnecessarily becomes a primary source for mental health care. The potential for recovery for the offender with a mental illness is too frequently derailed by inadequate care and the superimposed stigma of a criminal record. Cost studies suggest that taxpayers can save money by placing people into mental health and substance abuse treatment programs instead of in jails and prisons.98; 99 With the appropriate diversion and re-entry programs, these consumers could be successfully living in and contributing to their communities. Many non-violent offenders with mental illnesses could be diverted to more appropriate and typically less expensive supervised community care. Proven models exist for diversion programs operating in many areas around the country.

Too often, the criminal justice system unnecessarily becomes a primary source for mental health care.

Unfortunately, one of the groups most isolated from society are those consumers who attempt to return to the community after being incarcerated. Linking people with serious mental illnesses to community-based services - and in the case of youth, also to educational services - when they are diverted or released from jails or prisons through re-entry transition programs is an important strategy to re-integrate consumers into their communities.

The Commission recommends widely adopting adult criminal justice and juvenile justice diversion and re-entry strategies to avoid the unnecessary criminalization and extended incarceration of non-violent adult and juvenile offenders with mental illnesses. HHS and the Department of Justice, in consultation with the Department of Education, should provide Federal leadership to help States and local communities develop, implement, and monitor a range of adult and youth diversion and re-entry strategies.

Recommendation

2.4 Create a Comprehensive State Mental Health Plan.

Create Comprehensive State Mental Health Plans to Coordinate Services

The Commission envisions that developing and using Comprehensive State Mental Health Plans will greatly facilitate new partnerships among the Federal, State, and local governments to better use existing resources for people with mental illnesses. Incorporating the principles in this report, at the very least, the plan should:

  • Increase the flexibility of resource use at the State and local levels, encouraging innovative uses of Federal funding and flexibility in setting eligibility requirements;

  • Have State and local levels of government be more accountable for results, not solely to Federal funding agencies, but to consumers and families as well; and

  • Expand the options and the array of services and supports.

To accomplish this change, the Federal government must reassess pertinent financing and eligibility policies and align reporting requirements to avoid duplication, promote consistency, and seek accountability from the States.

The underlying premise of the Commission's support for Comprehensive State Mental Health Plans is consistent with the principles of Federalism - providing incentives to States by granting increased flexibility in exchange for greater accountability and improved outcomes. For example, California's AB-34 program, designed to meet the needs of adults with mental illnesses who are homeless, demonstrates that services provided through programs that allow flexibility in financing care do, indeed, produce positive outcomes that benefit individuals, families, and society while most efficiently using resources. (See Figure 2.3.)

The intended outcome of Comprehensive State Mental Health Plans is to encourage States and localities to develop a comprehensive strategy to respond to the needs and preferences of consumers or families.

The Commission recommends that each State, Territory, and the District of Columbia develop a Comprehensive State Mental Health Plan. The plans will have a powerful impact on overcoming the problems of fragmentation in the system and will provide important opportunities for States to leverage resources across multiple agencies that administer both State and Federal dollars. The Office of the Governor should coordinate each plan. The planning process should support a dialogue among all stakeholders and reach beyond the traditional State mental health agency to address the full range of treatment and support service programs that consumers and families need. The final result should be an extensive and coordinated State system of services and supports that work to foster consumer independence and their ability to live, work, learn, and participate fully in their communities.

Figure 2.3. Model Program: Integrated Services for Homeless Adults with Serious Mental Illnesses

Program

AB-34 Projects - Named after California Legislation of 2000

Goal

To "do whatever it takes" to meet the needs of homeless persons with serious mental illnesses, whether on the street, under a bridge, or in jail.

Features

Outreach (often by formerly homeless people), comprehensive services, 24/7 availability, partnerships with community providers, and real-time evaluation. Flexible funding, not driven by eligibility requirements.

Outcomes

66% decrease in number of days of psychiatric hospitalization, 82% decrease in days of incarceration, and 80% fewer days of homelessness.100

Biggest challenge

To change the culture, attitudes, and values around treating difficult populations with different strategies. Traditional services and providers tend to want to continue "business as usual" and follow funding streams rather than integrate services or share responsibility.

How other organizations can adopt

Change infrastructure to integrate services. This concept is a different way of doing business and requires links to a broader array of services, not just mental health.

Web sites

www.ab34.org (The web site is currently being developed and will be expanded soon.)
www.dmh.ca.gov (click on Community Mental Health Services, Homeless Mentally Ill Programs, and then Integrated Services for the Homeless Mentally Ill.

Sites

38 California counties

Recommendation

2.5 Protect and enhance the rights of people with mental illnesses.

Protect and Enhance Consumer and Family Rights

The Commission strongly endorses protecting and enhancing the rights of people with serious mental illnesses and children with serious emotional disturbances, particularly in the following four areas:

  • Fully integrating consumers into their communities under the Olmstead decision,

  • Eliminating conditions under which parents must forfeit parental rights so that their children with serious emotional disturbances can receive adequate mental health treatment,

  • Eliminating discrimination - especially in employment - based on past assignment of a psychiatric diagnosis or mental health treatment, and

  • Reducing the use of seclusion and restraint in mental health treatment settings.

 

End Unnecessary Institutionalization

The Commission calls for swiftly eliminating unnecessary and inappropriate institutionalization that severely limits integrating adults with serious mental illnesses and children with serious emotional disturbances into their communities.

Federal, State, and local entities must continue to implement Olmstead and ensure full community integration for all individuals with psychiatric disabilities. The Commission urges the HHS Office for Civil Rights (OCR) to follow through on the current Olmstead voluntary compliance initiatives, including widely disseminating information about Olmstead compliance and promoting community care, technical assistance for States, and clarifying Medicaid policies that affect individuals with serious mental illnesses.

Eliminate the Need to Trade Custody for Mental Health Care

The Commission is resolved that Federal, State, and local governments must work together with family and provider organizations to eliminate the practice of trading custody for care and to find a more family-friendly solution. One way to correct this appalling circumstance and allow children to stay with their families is to provide family-centered services.

The Commission endorses the General Accounting Office's recommendation:

"The Departments of Health and Human Services (HHS) and Justice (DOJ) should consider the feasibility of tracking children placed by their parents in the child welfare and juvenile justice systems to obtain mental health services. HHS, DOJ, and the Department of Education (Education) should develop an interagency working group to identify the causes of the misunderstandings at the State and local levels and create an action plan to address those causes. These agencies should also continue to encourage States to evaluate the programs that the States fund or initiate and determine the most effective means of disseminating the results of these and other available studies."101

If States reallocated the funds that currently pay for inappropriate services toward more appropriate mental health treatment and supports, more children could remain with their families. Not only would this shift of funds and services better help the children toward their own recovery, but it would also use resources more wisely.

End Employment Discrimination

The Commission acknowledges the need to eliminate employment discrimination in any form; it is too often based on current or past psychiatric diagnosis or mental health treatment. In particular, the Commission recommends strong national leadership to end employment discrimination against people with psychiatric disabilities in the public and private sectors.

All levels of Federal, State, and local government should review their employment policies to eradicate discriminatory practices on the basis of mental health treatment or diagnosis. A great opportunity exists for all levels of government and the private sector to serve as models by hiring individuals with disabilities.

Reduce the Use of Seclusion and Restraint

The Commission notes that professionals agree that the best way to reduce restraint deaths and injuries is to minimize restraint use as much as possible. High restraint rates are seen as evidence of treatment failure.

The Commission endorses reducing the use of seclusion and restraint and, when such interventions are used, appropriately trained personnel should administer them as safely and humanely as possible. It is also important to apply preventive measures (e.g., de-escalation techniques) that will minimize the need to use seclusion and restraint.

Many facilities and State agencies have had substantial success in reducing the use of restraint, while also reducing staff and patient injuries. However, much work remains for both institutional and community settings before this cultural change can fully occur. Leadership to continue these important changes will move us closer to a transformed mental health system that is defined by respect, compassion, and collaborative partnerships with the people it serves.

The Commission recommends that States have mechanisms to:

  • Report deaths and serious injuries resulting from the use of seclusion and restraint,

  • Ensure that they investigate these incidents, and

  • Track patterns of seclusion and restraint use.

 

To encourage frank and complete assessments and to ensure the individual's confidentiality, these internal reviews should be protected from disclosure.

The Commission recognizes that to decrease the use of seclusion and restraint, policies and facility guidelines must be developed collaboratively with input from consumers, families, treatment professionals, facility staff, and advocacy groups. Supporting technical assistance, staff training, and consumer/peer-delivered training and involvement should be implemented to effectively improve and implement policies and guidelines based on research about seclusion and restraint. To improve the quality of care and ensure positive outcomes, model programs and best practices must be identified and information must be shared.

 


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