National Alliance on Mental Illness
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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 1


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.