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Quality Issues in Consumer/Family Direction

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The views, opinions, and content of this paper are those of the author anddo not
necessarily reflect the views, opinions, or policies of the
Substance Abuse and Mental Health Services Administration
or the U.S. Department of Health and Human Services.

Introduction and Purpose

The advent and the implementation of both self-determination and self-directed services may require a fundamentally new foundation for establishing quality and quality assurance systems in the field of behavioral health. The goal of the self-determination movement has always been to assist individuals with disabilities to craft a meaningful life in their communities, rich in relationships and deeply connected to their communities and the world of business and commerce. Concurrent with the self-determination movement, we are witnessing the rise of self-directed services, which are central to self-determination but only a first important step toward the achievement of self-determination.

Some contemporary quality assurance systems, depending on what public policy choices are made, may be adequate for self-direction. This is so because control of and satisfaction with services or supports are seen as the goals of this movement. Therefore, it still makes sense for many in the quality assurance world to continue to rely on levels of satisfaction with services or supports as the primary foundation for quality assurance. Self-direction and self-determination are not incompatible. There are major points of agreement on the need to shift control of a targeted amount of resources directly to the person with a disability/family. There is a new awareness of the role responsibility plays with this freedom to choose providers and services.

Self-determination, however, raises the issue of the very purpose of public funding. Self-determination takes the position that this purpose must be related to a person with a disability having a purposeful life, having the ability to seek the same goals that all others have for personal relationships, membership in the community, and establishing an economic future. Those in favor of self-determination find that contemporary public policy frequently has no high expectations for individuals with disabilities outside the rubric of recovery and of freedom from substance abuse. In truth, there are no expectations beyond these goals in many systems. In simple self-direction, human services have remained the goal, and control of those services has become the foundation of self-directed services and supports. As a result, self-direction measures the adequacy of the services, the person’s control of these services, and the person’s satisfaction with them. Self-determination, however, views human services as a means to an end, not an end in itself.

Once we move from evaluating the adequacy of and control over services and supports to the goal of crafting a meaningful life, we will have to move from simply evaluating services to evaluating the impact of both services and benefits on individual lives. We will move from simply addressing adequacy, satisfaction, and control of services to addressing the quality of personal lives. This means that we have to fundamentally change our quality assurance systems from ones that posit and evaluate only increased satisfaction with services and supports to ones that reach a much higher standard: the realization, through the use of public dollars and supports, of meaningful lives predicated on universal human aspirations and supported by public policy that sets high expectations for those who receive public dollars.

A person with a physical disability may need assistance in getting up, getting dressed, and having breakfast each morning. A person receiving behavioral supports may need assistance provided through counseling or peer support. It is worthwhile to know whether the person is satisfied with who provides this assistance and how they provide it, and satisfaction-type evaluations adequately get to the answers. But these evaluations miss the point and the goal of the self-determination movement, which holds that such evaluations are simply not sufficient.

Self-determination raises a deeper personal and public policy issue: Why get up in the morning at all? In other words, why are individuals with disabilities not accorded nor expected to have purposes in life similar to those without disabilities? Virtually everyone else rises to carry out daily responsibilities, work, earn income, plan for life goals, take care of family members, contribute to the common good, and exercise citizenship. Until people with disabilities are accorded these same expectations, our view of quality will remain severely constrained. We will focus solely on the quality of services. Until the foundation of our benefit and program structures are changed, people with disabilities will remain forever impoverished, frequently consigned to unsafe housing, unable to work because of Social Security disincentives, and thus lead lives of minimal quality. In fact, these are consequences that frequently interfere with recovery.

From a rational public policy perspective, satisfaction is not only a low common denominator, it is dangerous. With the wide diversity in funding levels within and across State programs, satisfaction can lead to a defense of the indefensible. Expensive institutional settings that achieve high “satisfaction” ratings from some are one good example. Segregated lives may be satisfactory to some. Just as likely, those services and supports that might cost more than what a person needs may get sanctioned in the name of satisfaction. Satisfaction may become the lowest common denominator and remain entirely subjective. Only by positing high expectations and positive outcomes related to certain universal human needs, without eschewing important notions of satisfaction, can we ever set a higher standard that also meets the public policy test of quality and cost effectiveness.

The failure of our Federal statutes and regulations to adequately address the issue of the common humanity of individuals with disabilities has resulted too often in the substitution of human services and human service environments and programs for real life and high purpose. Individuals with disabilities have become human service subjects within a system of long-term supports, including recovery, which has no expectation that common life goals based on universal human aspirations can add great depth to the notion of addressing the health and welfare of individuals with disabilities and can and should help us redefine quality. Present public policy inadvertently supports lives lost to programs and rules that deny or ignore our common humanity, our common aspirations and dreams, and our common sense of responsibility to become contributing members of this society.

Background

The History and Meaning of Self-Determination: Parallels with Behavioral Health

From its inception, the promise of self-determination was rooted in increased quality, increased power for individuals with disabilities, increased status within the community for these same individuals, and, at the policy and organizational level, a fairer, more equitable distribution of public funds. It was just over a decade ago that the first demonstration on self-determination in New Hampshire began with a grant from the Robert Wood Johnson Foundation. The two populations included in the initial pilot were individuals with developmental disabilities and individuals with acquired brain injury, including a small number with concomitant psychiatric disability.

The original monograph outlining the general goals of the fundamental shift to self-determination was called An Affirmation of Community (Nerney & Crowley, 1994). This monograph outlined the “harm” that resulted from typical human services for these populations. Self-determination was described not as some form of rugged individualism, but rather as the recognition of our interconnectedness and shared vulnerability to loneliness, isolation, and increased expenditures of public dollars out of the control of individuals with disabilities and their families.

The shift in power necessary for self-determination was predicated on the human service system adopting structural changes that would facilitate and hasten self-determination becoming a reality for the tens of thousands of individuals presently served and for those tens of thousands currently awaiting public dollars for support. At its heart, self-determination was committed to fiscal conservatism. Better put, the self-determination movement was committed to obtaining better value for the dollars currently expended. Self-determination, under this rubric, became organized around a set of principles rather than a set of human service interventions or environments. These principles were not human service categories. They tried to capture both the political significance of self-determination and the implications for individuals at a very personal level. As outlined in Beyond Managed Care (Nerney & Shumway, 1996), the principles were these:

Freedom —the opportunity to choose where and with whom one lived as well as how one organized all important aspects of one’s life with freely chosen assistance as needed; Authority—the ability to control some targeted amount of public dollars; Support—the ability to organize that support in ways that were unique to the individual; Responsibility—the obligation to use public dollars wisely and to contribute to one’s community. In 2000, at the request of the national self-advocacy movement, the Center for Self-Determination added Confirmation—the recognition that individuals with disabilities themselves must be a major part of the redesign of the human service system.

In 2002, the Ohio Department of Mental Health granted a model Florida program on consumer control of resources for individuals served by behavioral health permission to use a tool developed in Ohio that set out some of these very same principles during the 1990s. Among these 11 principles were the following 5:

1. The individual directs the recovery process; therefore, the individual’s input is primary throughout the process.
2. People recover more quickly when their

- Hope is encouraged, enhanced, and/or maintained;
- Life roles with respect to work and meaningful activities are defined;
- Spirituality is considered;
- Culture is understood;
- Educational needs as well as those of their family/significant other are identified; and
- Socialization needs are identified.

3. The initial emphasis is on hope and the ability to develop trusting relationships.
4. Everyone operates from a strengths/assets model.
5. The involvement of significant others, friends, and family can enhance the recovery process. The individual defines who should be involved.

What Ohio had been doing under the direction of Dr. Michael Hogan was to begin the self-determination redefinition of quality in behavioral health by advancing three important aspects of self-determination: individual control of the recovery process, recognition of the interrelatedness of individuals and community, and stressing the importance of community settings and work.

The consumer-directed initiative in Florida built on the Ohio tool and incorporated these principles into their effort to forge a distinct self-determination movement in that State. The FloridaSDC (Florida Self-Directed Care) is a program for adults who have mental illnesses. The program is under the direction of a community advisory board composed primarily of participants in the FloridaSDC program. The advisory board, in collaboration with the State mental health authority in Florida, oversees the daily operations of the program through a project director. The model, whose idea is founded on the Cash and Counseling demonstration, was offered by advocates in northeast Florida as an alternative to a lawsuit against the State mental health authority. These five advocates, two of whom have been diagnosed with mental illnesses and three of whom are family members of individuals who have been diagnosed with mental illnesses, went the next step and proposed a process to allocate individual budgets using State monies that are directed by individuals with mental illnesses. “FloridaSDC is driven by individual freedom of choice in setting self-determined goals and selecting one’s own services and providers during the journey to recovery from a mental illness” (Russell, 2003).

The stunning insight of the early days of the self-determination movement was the realization that even health and safety could be easily compromised without close personal, committed relationships. And so it became imperative to fashion a new approach to quality that relied on the perspectives of individuals with disabilities and their close family and committed friends to determine what constituted quality. This notion of quality became deeply rooted then in the very foundation and promise of self-determination.

Increased Power and Authority

This new notion of what constituted quality required that control of the resources move from those who managed the human service system directly to individuals with disabilities and their allies. Every attempt at fashioning quality without giving power over resources and decision making to individuals resulted in a continuation of some form of paternalism and very often in compromises that adversely affected the quality sought. This necessitated the creation of highly personal and individual budgets that melded person-centered planning with person-centered budgeting. One of the hallmarks of a person-centered budget became flexibility: flexibility in where and with whom one could purchase supports and flexibility in changing and prioritizing line items as a person’s experience changed and priorities were reset.

The simple and straightforward “tools” of self-determination were spelled out in Communicating Self-Determination: The Tools of Self-Determination (Nerney, 2000). These three tools were individual budgets, independent support coordination, and fiscal intermediaries. All were necessary in order to deal with the inherent conflicts of interest in the present human service system. The Federal Medicaid agency, the Centers for Medicare and Medicaid Services (CMS), has adopted these tools as requirements for States submitting waiver applications under the Medicaid Independence Plus Waiver program.

The understanding of lack of real income as a contributor to personal isolation and lack of reciprocal-based relationships was the next step in understanding just how important lack of status was for so many people. As a result, a new sense of economic justice began to pervade the self-determination movement. Small demonstrations quickly revealed that lack of income was almost solely a residual by-product of the organization of human services and the minimal benefit structure, not a result of the significance of a person’s disability. One of the new, clearly articulated goals then became “the production of private income for everyone.” For those without the physical skills or interest in typical jobs, the development of microenterprises became an alternative that greatly enhanced both the community integration of these individuals and made possible the kinds of purchases that went to the heart of reciprocal relationships and true community memberships. This new but important dimension of self-determination was spelled out in a University of New Hampshire monograph, The Importance of Income, in an essay entitled “The Poverty of Human Services” (Nerney, 1998). Contemporary peer support projects like the Georgia Certified Peer Specialist Project (www.gacps.org) are moving toward a formal recognition that employment and self-employment must become part of the necessary holistic approach to self-determination in behavioral health.

Policy and Organizational Change

The structural changes necessary to accomplish income generation were becoming more and more apparent. The three tools (independent support coordination, fiscal intermediary organizations, and individual budgets) were gradually seen as absolutely essential because it became more and more apparent that human service systems were not only incredibly complex, but were rife with conflict of interest over both money and power or status.

• Independent support coordination. Individuals with disabilities, families, and allies had to have uncompromised or “conflict-of-interest-free” assistance in order to navigate the complexities of the funding authorities, the personal planning and budgeting necessary to craft a meaningful life-plan, and the authority to adequately represent the person with a disability. These functions collectively are referred to as independent support coordination and/or independent brokering. The field of behavioral health has an analogous movement that includes peer support and consumer-controlled self-help organizations.

Two other structural changes needed to be put in place as well: fiscal intermediary organizations that would protect the integrity of individual budgets, and highly personal and unique individual budgets.

• Fiscal intermediaries. Fiscal intermediaries serve a double purpose. They pay the bills based on an approved individual budget, report regularly to the person with a disability, and protect individuals and funders in the event of relapse. Together with advance directives, fiscal intermediaries make it possible for individuals to control the resources while in the recovery process, but not jeopardize public dollars in the event of a relapse.

• Individual budgets. The creation of highly personal and unique individual budgets became central to the implementation of self-determination. They also became the most problematic precisely because individual budgets under self-determination raised all of the conflicts of interest in the present system and represented a stark departure from typical human service contracts.

In the State of Michigan, self-determination with these structural changes in place has now been articulated as a right for persons with mental illnesses as well as those with developmental disabilities:

Michigan Department of Community Health
Mental Health and Substance Abuse Services
Self-Determination Policy and Practice Guideline
July 18, 2003

Persons who rely on the public mental health system for necessary supports and services must have access to meaningful options from which to make choices, and be supported to control the course of their lives. Arrangements that support self-determination must be sponsored by the public mental health system, assuring methods for the person to exert control over how, by whom, and to what ends they are served and supported.

The complete 13-page policy directive from the Michigan Department of Mental Health spells out the obligations and the responsibilities of both the Michigan Community Mental Health Boards and the consumers of typical mental health services. Thus, Michigan became the first State in the United States to formally offer self-determination to those in the mental health system as well as those with developmental disabilities served by these same mental health authorities.

In summary, the organizational changes that must be in place include conflict-of-interest-free support coordination with adequate authority to represent each person with a disability and afford them freely chosen peer support; the removal of the sums allocated to an individual from existing or future provider contracts and deposited exclusively for each person within a fiscal intermediary organization; and the creation and support of a highly unique individual budget with maximum flexibility. This later structural change must include the ability to purchase directly from community organizations and individual members of the community as well as from existing provider agencies that enter into contracts with individuals for discrete supports of various kinds.

Provider Agencies and Clinical Services

The FloridaSDC program summed up one of the key difficulties associated with accountability and quality that must be addressed in the development of future systems:

A number of data resources exist that allow program measurement. However, typically, these measures are primarily driven by ensuring that the provider has met certain criteria established for purposes of reimbursement. While there are satisfaction surveys and data collected on service participation behavior (assessment of function, days in the community, earned income, days at work, residential status), these behavior measures are not directly, or even indirectly, linked to a provider’s performance, and not tied into the performance contract between the State and provider. Historically, the reasoning for this non-linkage is that the provider has no control over the individual’s behavior. However, as a grassroots initiated program, FloridaSDC takes the position that facilitating access to services and giving individuals monetary control over the choices they make in accessing mental health services, that in fact, a person’s expectations and outcomes, to a great extent are controlled by the program and are access issues. Thus, while there is a great deal of available data from which to draw upon, there is little to no historical linkage between provider performance and service participant outcomes. Thus, in addition to designing a new service access system that is based on fiscal self-determination and independent brokerage, the program has the task of creating a performance evaluation and improvement process that directly links participant personal outcomes with program performance. (Russell, 2004)

Many contemporary initiatives in quality assurance separate issues of accountability from those who provide services (much like the dual standards advanced by the Council on Quality and Leadership) or posit only increased satisfaction as the primary foundation for quality, such as Core Indicators and the recent Mathematica evaluation of Cash and Counseling. Even the Participant Experience Survey (PES) developed by Medstat and others for CMS leave out fundamental values necessary to truly reach a deeper understanding of what quality must mean in the 21 st century. These contemporary initiatives are vast improvements over past quality assurance tools, but they remain inadequate to measure what it means to lead a meaningful life in our communities—a life that is rich in relationships and can overcome forced impoverishment to reach the goal of participating fully in American life.

The implementation of real self-determination has often been difficult, fraught with compromises, and resisted by many stakeholders. It is important for those with psychiatric disabilities and their allies to understand this history, as well as the additional barriers they face in an inadequately funded system, in order to create an agenda for change that will make self-determination a real possibility.

Key Issues and Values

Redefining Quality: Creating an Entirely New Approach to Quality

Virtually all contemporary quality assurance systems and accreditation agencies focus on satisfaction as the basis for quality in human services, at least with regard to individuals served by the present human service system. While “satisfaction” has its place as one measure of quality in many aspects of human service, it essentially begs the key questions of community integration and some culturally normative standard for what constitutes a meaningful life in one’s culture and society. It raises as well the specter of overly expensive arrangements that meet the test of satisfaction but not the public policy goals of increased quality and cost effectiveness.

The approach of measuring satisfaction with human service environments and human service interventions, no matter what their relevance is to what constitutes quality for every American, is particularly troublesome in that it sets no expectations that individuals with disabilities will achieve a life considered meaningful by other, nondisabled individuals. The result is that non-outcome-based activities are allowed to proceed unchallenged, the standards for human services are lowered, and low expectations for persons with disabilities are accepted.

Another by-product of this approach is the continued increase in the cost of long-term care, especially that associated with typical human services. Even within the paradigm of self-directed services it is entirely possible for an individual with a disability to control the money and hire and fire support personnel, freely choose individual providers of service, be “satisfied” with these arrangements, and yet, live a life of continued poverty, without love, romance, or deep relationships. Most likely, we would find this unacceptable for our loved ones and ourselves. Yet we implicitly condone and inadvertently support it for individuals with disabilities. We fail also to examine the unintended consequences of current benefit programs that create disincentives to live in safe and affordable housing, control the use of transportation, and work or achieve self-employment.

Purposes of the Self-Determination Movement

• To redefine the current concept of quality of life for individuals with behavioral health disabilities in terms of the characteristics of life quality that are universal to typical human experiences.
• To redefine the meaning of “welfare” in both Federal statute and regulations.
• To move beyond the view of life quality as defined by standards that apply only to the narrower world of the human service system.
• To redefine the way quality is viewed and measured for individuals by changing the underlying values, infrastructure, and evaluation methodology of the current service system.
• To look at outcomes for people with disabilities in the context of the expectations and aspirations shared by all humans, not just standards specific to the human service system. These values include (but are not limited to): choice and control; valued and enduring relationships; freedom, health, and safety and decent places to live; economic security; opportunities for community membership and contribution; and support by nurturing and caring human relationships and committed support personnel. (This is the self-determination paradigm.)

Key Values and Principles

• Individuals who have a psychiatric disability or substance abuse difficulties have a right to expect the opportunity to pursue the same quality of life as others who do not have disabilities.
• The quality of life of individuals receiving supports should be measured against the quality of life of individuals in the general public, as opposed to comparing them only to other individuals receiving similar services.
• Measurements of quality of life must be based on a set of values that are common to the human experience and are representative of common human ambitions and yearnings.
• What the system measures can restrict or can expand what is possible for people and the organizations that serve them; therefore we must be careful what we measure. We measure what we value, yet have not measured elementary concepts of what it means to be a valued member of this society and lead a meaningful life.
• People who require services or supports also should be able to define their own quality of life and have the supports that they need in order to define that quality and be successful in the pursuit of that life. This will result in creative tensions between individual desires and high public expectations. Without coercion, these tensions can be resolved over time.
• Measures of life quality should be both quantitative and qualitative.
• People who receive services should be actively involved in all aspects of the design and implementation of any system that measures their quality of life.

In Summary

Traditional measurements of quality have frequently isolated and segregated individuals with disabilities in the public mental health system by measuring only people with disabilities or the service system that serves them. We have looked at outcomes within a disability context, and in doing so set minimal expectations for what can and should be achieved by the service system and the individuals who use it. By measuring in this limited way, these minimal expectations have driven service system organizations to provide services within these limited expectations. For real change to occur and for real quality of life to emerge, we must “set the bar high;” we must expect and measure outcomes that will drive the service system to support individuals in their universal human pursuit of a good quality of life.

Action Items and Recommendations

As we move to institute concrete changes to our human services system, it is important to recognize that the context of the future will include even scarcer resources than we now employ for behavioral health needs. Only substantial and fundamental change to the field of behavioral health will make services more cost effective without hurting individuals with disabilities. All of these action items and recommendations are designed to be utilized by States under the rubric of self-determination with corresponding system changes that includehighly personal individual budgets, independent support coordination/peer support, and fiscal intermediaries. Only under these conditions do we believe that we canseriously exploreless costly alternatives to traditional, professionally dominated “care,” make traditional mental health services more accountable, and encourage individuals to work, enjoy safe housing, and manage their recovery with assistance, when necessary, without continually jeopardizing benefits before personal income reaches adequate levels. Change will require committed leadership from SAMHSA across all Federal programs and, indeed, within all of the States.

Public Policy

The loss of elementary American freedoms within contemporary human services still represents the central core issue that self-determination attempts to address. The current benefit structure has made the intersection of benefits and work so complex that it has the unintended effect of discouraging individuals with disabilities from working. Irrational prohibitions within the Medicaid Waiver and State Program make typical and safe housing inaccessible, force many into unsafe housing or expensive human service environments, and force tens of thousands of people with disabilities to surrender their freedoms and opportunities in exchange for human service substitutions for community and citizenship. Income and asset limitations under the Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) programs force the same consequences for program “beneficiaries.”

People with disabilities want to control the supports they need. Even more important, they want to control their destiny. Self-determination is about creating the possibilities of destiny.

Recommendations to SAMHSA

• Create clear public policy and provide financial incentives for the direction that behavioral health needs to move, guided by a set of principles and values that recognizes and supports full and meaningful lives for individuals served by the public mental health system. This means that not only will individuals control the process of recovery, but that they will be accorded the means to live lives based on common human aspirations, lift themselves out of imposed poverty, and live and work in typical community settings.
• Insist that individuals with disabilities and families be equal partners in the development of this new system of supports.
• Promote the development of the tools of self-determination as a structural foundation forchange within States. These include independent support coordination, fiscal intermediaries, and individual budgets.
• Help design and promote quality assurance systems that include a large measure of accountability for those who provide services.
• Promote applied research to test the cost effectiveness and the most cost-effective ways to move to this system of supports, compared to the cost of not carrying out these essential reforms.
• Make a commitment to fund both training and re-training efforts to move from a system that fosters dependency to one that promotes self-determination.
• At the State and local delivery level, fund demonstrations and provide technical assistance in order to

- Create implementation plans,
- Foster the development of structural changes, and
- Create equal partnerships of people with disabilities, families, and policymakers.

• At the Federal level, help to create a seamless series of incentives and rule changes (including long-term legislative changes) that will

- Address forced impoverishment,
- Allow individuals with disabilities greater means to control personal transportation, and
- Address the barriers within both the Medicaid and Social Security programs that limit the ability to work and afford safe housing.

Specifically, SAMHSA should pursue the following policy changes that address these issues. Funding should be made available to demonstrate the cost effectiveness of pursuing these changes as well.

Medicaid

Proposed legislative change. Allow under 1915 (c) (amended to include specifically persons with behavioral health needs) all of the creative approaches to supporting individuals that can now only be obtained under Section 1115, which is a demonstration or experimental part of the Medicaid statute. Few States seek 1115 Waivers because the protocol is arduous, the oversight cumbersome, and the flexibility States and individuals with disabilities desire slow in being approved. Simply by making this the norm (simple Federal approval within 60 days without excessiveoversight or complexity) rather than the exception, States would be encouraged to, within the same fiscal constraints Medicaid waivers now require, demonstrate the creativity and flexibility that will allow better value for current public dollars.

Policy suggestion. Prior to these legislative changes, SAMHSA should take a leadership role in changing current government protocols for applying for and receiving 1115 Waivers for this population. Specifically, SAMHSA could approach CMS to create a partnership that would result in SAMSHA providing seed money and CMS providing long-term funding under the waiver programs and Medicaid State plan programs in order to accomplish these goals. A joint planning group could then be expanded to include other Federal agencies with key responsibilities to the lives of individuals with psychiatric disabilities.

Both under current 1115 regulations and under proposed legislative changes, these technical changes to the statute should specifically

• Allow room and board costs in order to make typical and safe housing more available to individuals with significant disabilities.
• Allow the purchase/lease of personal transportation, including transportation for those individuals who cannot drive but need to control the means of transportation to live meaningful lives.
• Allow individuals to pay employers directly for coworker support, training costs, transportation, or temporary wage supplementation.
• Allow any person or organization to be a qualified Medicaid provider except where appropriate for normal criminal and other background checks. Although States generally have the authority to set these standards, many Medicaid waivers pose undue restrictions.
Allow individuals to capitalize very small microenterprises up to $1,500 annually.

Social Security

Proposed legislative change. States would have the option to notify the Social Security Administration that either separately or in conjunction with a Medicaid waiver like the one proposed above, changes will be instituted to improve the income, both earned and unearned, of Social Security recipients (both SSI and SSDI) for any disability population whose members typically do not leave the benefit roles in excess of 1 percent of those enrolled.

Policy suggestion . Develop a protocol with the Social Security Administration to facilitate the following type of Social Security waiver. Specifically, this waiver would include the following four elements:

• Social Security reduction formula triggered only after the person earns $280 a month rather than $65 a month.
• $1 reduction on unearned income for every $4 to $7 generated (see Freedom accounts below).
• The establishment of Freedom accounts of up to $10,000 per person for specific life-affirming purposes without affecting any benefits.
• The creation of matched savings accounts, i.e., Individual Development Accounts (IDAs), for each of these Freedom accounts.

Most of the recommendations in this dual waiver approach have just recently been secured for the State of Florida with the assistance of the Center for Self-Determination (Federal Register, February 5, 2004; Nerney, Carver, Morgan, Harkins, & Rafter, 2003).

Vocational Rehabilitation and the Ticket to Work

Proposed legislative change. Under State programs promoting self-determination, individuals with disabilities eligible for vocational rehabilitation services and/or the Ticket to Work could have up to 90 percent of average expenditures for these traditional services or tickets deposited with the person's fiscal intermediary. Through the development of an individual budget controlled by the person with a disability, these funds could be utilized in any meaningful way, such as those proposed for public funds in the section on Medicaid above, with the purpose of attaining meaningful real employment in the competitive private/public sector or self-employment.

Policy suggestion. Work with the Commissioner of Social Security to make the Ticket to Work a cash benefit under demonstration proposals initiated by SAMHSA.

Housing

The projected decline and long waiting lists for Section 8 vouchers (HUD’s most important program for individuals with disabilities) mean that new strategies need to be developed to make typical housing accessible for individuals with psychiatric disabilities.

Government should fund the seed money necessary for the creation of housing development corporations that will work to make typical housing in safe neighborhoods more affordable for individuals with disabilities. Work with the Department of Housing and Urban Development to create a national program. Details of this strategy are available in The Promise of Self-Determination for Persons with Psychiatric Disabilities (Nerney, 2004).

References

Michigan Department of Community Health. (2003). Self-determination policy and practice guideline. Accessed at http:// www.michigan.gov/documents/SelfDeterminationPolicy_70262_7.pdf.

Nerney, T. (2000). Communicating self-determination: The tools of self-determination. Ann Arbor, MI: The Center for Self-Determination.

Nerney, T. (2004). The promise of self-determination for persons with psychiatric disabilities. In J.A. Jonikas & J.A. Cook (Eds.), The UIC NRTC’s National Self-Determination and Psychiatric Disability Invitational Conference, “We Make the Road by Traveling On It,” conference papers (pp. 129-175). Chicago: University of Illinois at Chicago National Research and Training Center on Psychiatric Disability. (Accessed at http://www.psych.uic.edu/uicnrtc/sdconfpapers.htm)

Nerney, T., Carver, P., Morgan, R., Harkins, D., & Rafter, P. (2003). A blueprint for self-determination in Florida. Ann Arbor, MI: The Center for Self-Determination.

Nerney, T., & Crowley, R., (1994). An affirmation of community. Concord, NH: University of New Hampshire.

Nerney, T., & Shumway, D. (1996). Beyond managed care: Self-determination for persons with developmental disabilities. Concord, NH: University of New Hampshire.

Russell, C. (2003). The Florida Self-Directed Care Program: Use of a “money follows the person” model to promote the recovery of individuals with a mental illness. Unpublished manuscript.

Russell, C. (2004). Florida SDC quality assurance and improvement program. Unpublished manuscript.