Goal 2 - Mental Health Care Is Consumer and Family Driven

Recommendations

2.1 Develop an individualized plan of care for every adult with a serious mental illness and child with a serious emotional disturbance. 2.2 Involve consumers and families fully in orienting the mental health system toward recovery. 2.3 Align relevant Federal programs to improve access and accountability for mental health services. 2.4 Create a Comprehensive State Mental Health Plan. 2.5 Protect and enhance the rights of people with mental illnesses.

Understanding the Goal

The Complex Mental Health System Overwhelms Many Consumers

Nearly every consumer of mental health services who testified before or submitted public comments to the Commission expressed the need to fully participate in his or her plan for recovery. In the case of children with serious emotional disturbances, their parents and guardians strongly echoed this sentiment. Consumers and families told the Commission that having hope and the opportunity to regain control of their lives was vital to their recovery.

Indeed, emerging research has validated that hope and self-determination are important factors contributing to recovery.^{45; 46} However, understandably, consumers often feel overwhelmed and bewildered when they must access and integrate mental health care, support services, and disability benefits across multiple, disconnected programs that span Federal, State, and local agencies, as well as the private sector.

As the President said in his speech announcing the creation of the Commission, one of the major obstacles to quality mental health care is:

"... our fragmented mental health service delivery system. Mental health centers and hospitals, homeless shelters, the justice system, and our schools all have contact with individuals suffering from mental disorders."

Consumers of mental health services must stand at the center of the system of care. Consumers' needs must drive the care and services that are provided. Unfortunately, the services currently available to consumers are fragmented, driven by financing rules and regulations, and restricted by bureaucratic boundaries. They defy easy description.

Program Efforts Overlap

Loosely defined, the mental health care system collectively refers to the full array of programs for anyone with a mental illness. These programs exist at every level of government and throughout the private sector. They have varying missions, settings, and financing. They deliver or pay for treatments, services, or other types of supports, such as housing, employment, or disability benefits. For instance, one program's mission might be to offer treatment through medication, psychotherapy, substance abuse treatment, or counseling, while another program's purpose might be to offer rehabilitation support. The setting could be a hospital, a community clinic, a private office, a school, or a business.

Many mainstream social welfare programs are not designed to serve people with serious mental illnesses, even though this group has become one of the largest and most severely disabled groups of beneficiaries.

A brief look at traditional funding sources for mental health services illustrates the impact of this overly complex system. The Community Mental Health Services Block Grant, funded by the U.S. Department of Health and Human Services (HHS) through the Substance Abuse and Mental Health Services Administration (SAMHSA), provides funding to the 59 States and territories. It is only one source of Federal funding that State mental health authorities manage. The funding totaled approximately $433 million in 2002,⁴⁷ or less than 3% of the revenues of these State agencies.⁴⁸

But larger Federal programs that are not focused on mental health care play a much more substantial role in financing it. For example, through Medicare and Medicaid programs alone, HHS spends nearly $24 billion each year on beneficiaries' mental health care.¹⁵

Moreover, the largest Federal program that supports people with mental illnesses is not even a health services program - the Social Security Administration's Supplemental Security Income (SSI) and Social Security Disability Income (SSDI) programs, with payments totaling approximately $21 billion in 2002.^49-51

Other significant programs that are funded separately and play a role in State and local systems include:

• Housing,

• Rehabilitation,

• Education,

• Child welfare,

• Substance abuse,

• General health,

• Criminal justice, and

• Juvenile justice, among others.

Each program has its own complex, sometimes contradictory, set of rules. Many mainstream social welfare programs are not designed to serve people with serious mental illnesses, even though this group has become one of the largest and most severely disabled groups of beneficiaries.

If this current system worked well, it would function in a coordinated manner, and it would deliver the best possible treatments, services, and supports. However, as it stands, the current system often falls short. Many people with serious mental illnesses and children with serious emotional disturbances remain homeless or housed in institutions, jails, or juvenile detention centers. These individuals are unable to participate in their own communities.

Consumers and Families Do Not Control Their Own Care

In a consumer- and family-driven system, consumers choose their own programs and the providers that will help them most. Their needs and preferences drive the policy and financing decisions that affect them. Care is consumer-centered, with providers working in full partnership with the consumers they serve to develop individualized plans of care. Individualized plans of care help overcome the problems that result from fragmented or uncoordinated services and systems.

Currently, adults with serious mental illnesses and parents of children with serious emotional disturbances typically have limited influence over the care they or their children receive. Increasing opportunities for consumers to choose their providers and allowing consumers and families to have greater control over funds spent on their care and supports facilitate personal responsibility, create an economic interest in obtaining and sustaining recovery, and shift the incentives towards a system that promotes learning, self-monitoring, and accountability. Increasing choice protects individuals and encourages quality.

Individualized plans of care help overcome the problems that result from fragmented or uncoordinated services and systems.

Evidence shows that offering a full range of community-based alternatives is more effective than hospitalization and emergency room treatment.¹⁸ Without choice and the availability of acceptable treatment options, people with mental illnesses are unlikely to engage in treatment or to participate in appropriate and timely interventions. Thus, giving consumers access to a range of effective, community-based treatment options is critical to achieving their full community participation. To ensure this access, the array of community-based treatment options must be expanded.

In particular, community-based treatment options for children and youth with serious emotional disorders must be expanded. Creating alternatives to inpatient treatment improves engagement in community-based treatment and reduces unnecessary institutionalization. These young people are too often placed in out-of-state treatment facilities, hours away from their families and communities. Further segregating these children from their families and communities can impede effective treatment.

Emerging evidence shows that a major Federal program to establish comprehensive, community-based systems of care for children with serious emotional disturbances has successfully reduced costly out-of-state placements and generated positive clinical and functional outcomes. Clinically, youth in systems of care sites showed an increase in behavioral and emotional strengths and a reduction in mental health problems. For these children, residential stability improved, school attendance and school performance improved, law enforcement contacts were reduced, and substance use decreased.⁵²

Consumers Need Employment and Income Supports

The low rate of employment for adults with mental illnesses is alarming. People with mental illnesses have one of the lowest rates of employment of any group with disabilities - only about 1 in 3 is employed.⁵³ The loss of productivity and human potential is costly to society and tragically unnecessary. High unemployment occurs despite surveys that show the majority of adults with serious mental illnesses want to work - and that many could work with help.^{54; 55}

Many individuals with serious mental illnesses qualify for and receive either SSI or SSDI benefits. SSI is a means-tested, income-assistance program; SSDI is a social insurance program with benefits based on past earnings. A sizable proportion of adults with mental illnesses who receive either form of income support live at, or below, the poverty level. For more than a decade, the number of SSI and SSDI beneficiaries with psychiatric disabilities has increased at rates higher than each program's overall growth rate. Individuals with serious mental illnesses represent the single largest diagnostic group (35%) on the SSI rolls, while representing over a quarter (28%) of all SSDI recipients.^{49; 51}

People with mental illnesses have one of the lowest levels of employment of any group with disabilities - only about 1 in 3 is employed.

Though living in poverty, SSI recipients paradoxically find that returning to work makes them even poorer, primarily because employment results in losing Medicaid coverage, which is vital in covering the cost of medications and other treatments. According to a large, eight-State study, only 8% of those returning to full time jobs had mental health coverage.⁵⁶

Recent Federal legislation has tried to address the loss of Medicaid and other disincentives to employment. For instance, the "Medicaid Buy-In" legislation allows States to extend Medicaid to disabled individuals who exit the SSI/SSDI rolls to resume employment, but many States cannot afford to implement Medicaid Buy-In. The Balanced Budget Act of 1997 allows States to extend Medicaid coverage to disabled individuals whose earned income is low, but still above the Federal Poverty Guidelines.

Another statutory reform - The Ticket to Work and Work Incentives Improvement Act (TWWIIA) of 1999 - is problematic because its rules do not give vocational rehabilitation providers enough incentives to take on clients who have serious mental illnesses. Rather, these programs are more inclined to serve the least disabled - a process called creaming, in reference to the legislation's unintentional incentives for vocational rehabilitation providers to serve less disabled people rather than more disabled ones (the latter most commonly people with serious mental illnesses). One large study found that only 23% of people with schizophrenia received any kind of vocational services.⁶ Since TWWIIA rewards only those providers who help their clients earn enough to no longer qualify for SSI, the bottom line is that most people with serious mental illnesses do not receive any vocational rehabilitation services at all.

Because they cannot work in the current climate, many consumers with serious mental illnesses continue to rely on Federal assistance payments in order to have health care coverage, even when they have a strong desire to be employed. Regrettably, a financial disincentive to achieve full employment exists because consumers lose Federal benefits if they become employed. Adding to the problem is the fact that most jobs open to these individuals have no mental health care coverage, so consumers must choose between employment and coverage. Consequently, they depend on a combination of disability income and Medicaid (or Medicare), all the while preferring work and independence.

For youth with serious emotional disturbances, the employment outlook is also bleak. A national study found that only 18% of these youth were employed full time, while another 21% worked part-time for one to two years after they left high school. This group had work experiences characterized by greater instability than all other disability groups.⁵⁷

Other financial disincentives to employment exist as well, including potential loss of housing and transportation subsidies.

Over the next ten years, the U.S. economy is projected to grow by 22 million jobs, many in occupations that require on-the-job training.⁵⁸ With appropriate forms of support, people with mental illnesses could actively contribute to that economic growth, as well as to their own independence. They could fully participate in their communities. Instead, they are trapped into long-term dependence on disability income supports that leave them living below the poverty level.

A Shortage of Affordable Housing Exists

The lack of decent, safe, affordable, and integrated housing is one of the most significant barriers to full participation in community life for people with serious mental illnesses. Today, millions of people with serious mental illnesses lack housing that meets their needs.

The shortage of affordable housing and accompanying support services causes people with serious mental illnesses to cycle among jails, institutions, shelters, and the streets; to remain unnecessarily in institutions; or to live in seriously substandard housing.⁵⁹ People with serious mental illnesses also represent a large percentage of those who are repeatedly homeless or who are homeless for long periods of time.⁶⁰

In fact, people with serious mental illnesses are over-represented among the homeless, especially among the chronically homeless. Of the more than two million adults in the U.S. who have at least one episode of homelessness in a given year, 46% report having had a mental health problem within the previous year, either by itself or in combination with substance abuse.⁵⁹ Chronically homeless people with mental illnesses are likely to:

• Have acute and chronic physical health problems;

• Use alcohol and drugs;

• Have escalating, ongoing psychiatric symptoms; and

• Become victimized and incarcerated.⁶¹

A recent study shows that people who rely solely on SSI benefits - as many people with serious mental illnesses do - have incomes equal to only 18% of the median income and cannot afford decent housing in any of the 2,703 housing market areas defined by the U.S. Department of Housing and Urban Development (HUD).⁶² HUD reports to Congress show that as many as 1.4 million adults with disabilities who receive SSI benefits - including many with serious mental illnesses - pay more than 50% of their income for housing. ⁶³

Affordable housing programs are extremely complex, highly competitive, and difficult to access. Federal public housing policies can make it difficult for people with poor tenant histories, substance use disorder problems, and criminal records - all problems common to many people with serious mental illnesses - to qualify for Section 8 vouchers and public housing units. Those who do receive Section 8 housing vouchers often cannot use them because:

• The cost of available rental units may exceed voucher program guidelines, particularly in tight housing markets;

• Available rental units do not meet Federal Housing Quality Standards for the voucher program;

• Private landlords often refuse to accept vouchers; and

• Housing search assistance is often unavailable to consumers.

 

The lack of decent, safe, affordable, and integrated housing is one of the most significant barriers to full participation in community life for people with serious mental illnesses.

Tragically, many housing providers discriminate against people with mental illnesses. Too many communities are unwilling to have supportive housing programs in their neighborhoods. Since the 1980s, the Federal government has had the legal tools to address these problems, yet has failed to use them effectively. Between 1989 and 2000, HUD's fair housing enforcement activities diminished, despite growing demand. The average age of complaints at their closure in FY 2000 was nearly five times the 100-day period that Congress set as a benchmark.⁶⁴

Just as the U.S. Supreme Court's Olmstead decision has increased the demand for integrated and affordable housing for people with serious mental illnesses, public housing is less available. Since 1992, approximately 75,000 units of HUD public housing have been converted to "elderly only" housing and more units are being converted every year, leaving fewer units for people with disabilities.⁶⁵

Too few mental health systems dedicate resources to ensuring that people with mental illnesses have adequate housing with supports. These systems often lack staff who are knowledgeable about public housing programs and issues. Partnerships and collaborations between public housing authorities and mental health systems are far too rare. Highly categorical Federal funding streams (silos) for mental health, housing, substance abuse, and other health and social welfare programs greatly contribute to the fragmentation and failure to comprehensively address the multiple service needs of many people with serious mental illnesses.

Limited Mental Health Services Are Available in Correctional Facilities

In the U.S., approximately 1.3 million people are in State and Federal prisons, and 4.6 million are under correctional supervision in the community.^{66; 67} Remarkably, approximately 13 million people are jailed every year, with about 631,000 inmates serving in jail at one time. The rate of serious mental illnesses for this population is about three to four times that of the general U.S. population.⁶⁸ This means that about 7% of all incarcerated people have a current serious mental illness; the proportion with a less serious form of mental illness is substantially higher.⁶⁸

People with serious mental illnesses who come into contact with the criminal justice system are often:

• Poor,

• Uninsured,

• Disproportionately members of minority groups,

• Homeless, and

• Living with co-occurring substance abuse and mental disorders.

They are likely to continually recycle through the mental health, substance abuse, and criminal justice systems.⁶⁹

As a shrinking public health care system limits access to services, many poor and racial or ethnic minority youth with serious emotional disorders fall through the cracks into the juvenile justice system.

When they are put in jail, people with mental illnesses frequently do not receive appropriate mental health services. Many lose their eligibility for income supports and health insurance benefits that they need to re-enter and re-integrate into the community after they are discharged.

Women are a dramatically growing presence in all parts of the criminal justice system. Current statistics reveal that women comprise 11% of the total jail population,⁷⁰ 6% of prison inmates,⁷¹ 22% of adult probationers, and 12% of parolees.⁷² Many women entering jails have been victims of violence and present multiple problems in addition to mental and substance abuse disorders, including child-rearing and parenting difficulties, health problems, histories of violence, sexual abuse, and trauma.⁷³ Gender-specific services and gender-responsive programs are in increasing demand but are rarely present in correctional facilities designed for men. Early needs assessment, screening for mental and substance abuse disorders, and identification of other needs relating to self or family are critical to effectively plan treatment for incarcerated women.

More than 106,000 teens are in custody in juvenile justice facilities.⁷⁴ As a shrinking public health care system limits access to services, many poor and racial or ethnic minority youth with serious emotional disorders fall through the cracks into the juvenile justice system. (See Goal 4 for a broader discussion of mental health screening.)

Recent research shows a high prevalence of mental disorders in children within the juvenile justice system. A large-scale, four-year, Chicago-based study found that 66% of boys and nearly 75% of girls in juvenile detention have at least one psychiatric disorder. About 50% of these youth abused or were addicted to drugs and more than 40% had either oppositional defiant or conduct disorders.

The study also found high rates of depression and dysthymia: 17% of boys; 26% of detained girls.⁷⁵ As youth progressed further into the formal juvenile justice system, rates of mental disorder also increased: 46% of youth on probation met criteria for a serious emotional disorder compared to 67% of youth in a correctional setting.⁷⁶ Appropriate treatment and diversion should be provided in juvenile justice settings followed by routine and periodic screening.

Fragmentation Is a Serious Problem at the State Level

State mental health authorities have enormous responsibility to deliver mental health care and support services, yet they have limited influence over many of the programs consumers and families need. Most resources for people with serious mental illnesses (e.g., Medicaid) are not typically within the direct control or accountability of the administrator of the State mental health system. For example, depending on the State and how the budget is prepared, Medicaid may be administered by a separate agency with limited mental health expertise. Separate entities also administer criminal justice, housing, and education programs, contributing to fragmented services.

A Comprehensive State Mental Health Plan would create a new partnership among the Federal, State, and local governments and must include consumers and families.

The development of a Comprehensive State Mental Health Plan would create a new partnership among the Federal, State, and local governments and must include consumers and families. To be effective, the plan must reach beyond the traditional State mental health agency and the block grant to address the full range of treatment and support service programs that mental health consumers and their families should have. The planning process should support a respectful, collaborative dialogue among stakeholders, resulting in an extensive, coordinated State system of services and supports.

As States accept increased responsibility for coordinating mental health care, they should have greater flexibility in spending Federal resources to meet these needs. Using a performance partnership model, the Federal government and the State will negotiate an agreement on outcomes. This shift will then give States the flexibility to determine how they will achieve the desired outcomes outlined in their plans.

Aligning relevant Federal programs to support Comprehensive State Mental Health Plans can have the powerful impact of fostering consumers' independence and their ability to live, work, learn, and participate fully in their communities. (See Recommendations 2.3 and 2.4.)

Consumers and Families Need Community-based Care

In the 1999 Olmstead v. L.C. decision, the U.S. Supreme Court held that the unnecessary institutionalization of people with disabilities is discrimination under the Americans with Disabilities Act.⁷⁷ The Court found that:

"...confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment."

President Bush urged promptly implementing the Olmstead decision in his 2001 Executive Order 13217, mobilizing Federal resources in support of Olmstead. However, many adults and children remain in institutions instead of in more appropriate community-based settings.

On a separate topic, the General Accounting Office (GAO) recently issued a report that illustrates the tragic and unacceptable circumstances that result in thousands of parents being forced to place their children into the child welfare or juvenile justice systems each year so that they may obtain the mental health services they need. Loving and responsible parents who have exhausted their savings and health insurance face the wrenching decision of surrendering their parental rights and tearing apart their families to secure mental health treatment for their troubled children. The GAO report estimates that, in 2001, parents were forced to place more than 12,700 children in the child welfare or juvenile justice systems as the last resort for those children to receive needed mental health care treatment. Moreover, these numbers are actually an undercount because 32 states, including the five largest, were unable to provide data on the number of children affected.⁷⁸

According to the report, several factors contribute to the consequence of "trading custody for services," including:

• Limitations of both public and private health insurance,

• Inadequate supply of mental health services,

• Limited availability of services through mental health agencies and schools, and

• Difficulties meeting eligibility rules for services.

When parents cede their rights in order to place their children in foster care or in a program for delinquent youth, they may also be inadvertently placing their children at risk for abuse or neglect.⁷⁹ These placements also increase the financial burden on State child welfare and juvenile justice authorities. A more family-friendly policy must be found to remedy this situation.

Consumers Face Difficulty in Finding Quality Employment

Only about one-third of people with mental illnesses are employed, and many of them are under-employed.⁵³ For example, about 70% of people with serious mental illnesses with college degrees earned less than $10 per hour.⁸⁰ Overall, people with psychiatric disabilities earned a median wage of only about $6 per hour versus $9 per hour for the general population.⁵³

Problems begin long before consumers enter the work force. Many individuals with serious mental illnesses lack the necessary high school and post-secondary education or training vital to building careers. A major study found that youth with emotional disturbances have the highest percentage of high school non-completion and failing grades compared with other disabled groups.⁸¹

Only about one-third of people with mental illnesses are employed, and many of them are under-employed.

Special education legislation - the Individuals with Disabilities Education (IDEA) Act - was designed to prepare school-aged youth to make the transition to the workplace, but its promise remains largely unfulfilled. Similarly, the Americans with Disabilities Act (ADA) has not fulfilled its potential to prevent discrimination in the workplace. Workplace discrimination, either overt or covert, continues to occur. According to surveys conducted over the past five decades, employers have expressed more negative attitudes about hiring workers with psychiatric disabilities than any other group.^{82; 83} Economists have found unexplained wage gaps that are evidence of discrimination against those with psychiatric disabilities.⁸⁴

The Use of Seclusion and Restraint Creates Risks

An emerging consensus asserts that the use of seclusion and restraint in mental health treatment settings creates significant risks for adults and children with psychiatric disabilities. These risks include serious injury or death, re-traumatizing people who have a history of trauma, loss of dignity, and other psychological harm. Consequently, it is inappropriate to use seclusion and restraint for the purposes of discipline, coercion, or staff convenience.

Seclusion and restraint are safety interventions of last resort; they are not treatment interventions. In light of the potentially serious consequences, seclusion and restraint should be used only when an imminent risk of danger to the individual or others exists and no other safe, effective intervention is possible. It is also inappropriate to use these methods instead of providing adequate levels of staff or active treatment.

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 for choice will create a more viable marketplace for mental health care and provide a greater level of satisfaction by 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.