This article was written in response to a 4-page paper entitled “Executive Summary: Institutional and Community-Based Systems for People With Mental Retardation: A Review of the Cost Comparison Literature,” which was funded and widely disseminated by the Voice of the Retarded—VOR (2002). In this Executive Summary, which is described by VOR as a “research tool,” an analysis of existing studies of costs of supports and services for people with mental retardation and developmental disabilities is reported. It is noted in the summary that it is a “slightly modified” version of a manuscript submitted for publication. Although we have not reviewed the manuscript submitted for publication and cannot comment on it, the Executive Summary is an example of how research can be turned into a call for poor public policy.
The Developmental Disabilities Quality Coalition (DDQC) is comprised of the chief staff executives of The Arc of the United States, American Association on Mental Retardation, American Network of Community Options and Resources, Council on Quality and Leadership, National Association of State Directors of Developmental Disabilities Services, American Association of University Centers on Disabilities, National Association of Protection and Advocacy Systems, National Alliance of Direct Support Professionals, Consortium of Developmental Disabilities Councils, and National Association of Developmental Disabilities Councils. Members of this coalition are gravely concerned about the misguided interpretation of this Executive Summary as it relates to the national agenda for full inclusion, choice, and person-centered outcomes for people with mental retardation and developmental disabilities. In addition to the DDQC and numerous other advocacy and disability organizations nationwide, this agenda is supported at the highest levels of public policy by the current Bush Administration through its “New Freedom Initiative” and by the Supreme Court in its Olmstead decision.
It is imperative that we place this report in its proper historical context. Deinstitutionalization has been taking place in the United States for the past 3 decades. In the 1990s alone there was a 44% decline in the number of persons in state-operated institutions (Lakin, Prouty, Polister, & Smith, 2002). It is critical to note that these reductions were not driven primarily by potential cost savings. In so many cases, states also “matched” someone leaving the institution with someone at home waiting for services. These institutions closed and others are continuing to close because it is the right thing to do, not because it will save money. The best estimate is that all institutions will be closed somewhere between 2011 and 2025, the later date adjusted for slower progress in Georgia, Illinois, Kentucky, Louisiana, Mississippi, New Jersey, Oklahoma, Tennessee, Texas, and Virginia (Braddock, Hemp, Rizzolo, Parish, & Pomeranz, 2002).
The disability field has, over these past 3 decades, learned to separate “level of care” from real estate. They are two separate issues. Where the needed supports for a person take place and the frequency, intensity, and duration of those supports are two separate issues.
There has been a national movement to promote The Community Imperative (1979), which every member of the DDQC has endorsed. The Community Imperative states, in part:
All people have fundamental moral and constitutional rights.
These rights must not be abrogated merely because a person has a mental or physical disability.
Among these fundamental rights is the right to community living.
All people, as human beings, are inherently valuable.
All people can grow and develop.
All people are entitled to conditions that foster their development.
Such conditions are optimally provided in community settings.
Note that nowhere in The Community Imperative, which is a civil rights and social justice statement, is there any mention of cost. The question of the comparative costs of institutional versus community services is not relevant; it is a non-issue. The real question is: Under what circumstances should or, more important, will the taxpaying public pay for 24-hour wrap-around services for people with disabilities regardless of the setting in which those services are provided? In institutions, the taxpaying public is paying for services that are shown to produce poor outcomes for the people served. Clearly, this is poor public policy.
Discussions of comparative costs have been going on ever since people started mounting serious threats to the existence of institutions. The fundamental question that needs to be addressed is whether or not we, as a society, want to have those among us who have disabilities receive the supports they need in their own local communities, close to families and friends, or do we want to segregate them from the rest of society in congregate settings?
Does it make sense to label and categorize people on the basis of some characteristic and treat them as if the condition they have is the most important thing about them? Is this categorization so important, in fact, that it is a legitimate interest of the state to offer alternatives for the provision of needed care and support that, in fact, force people to trade their human and civil rights for services? Doesn't our nation's Constitution have something to say about this?
If it is agreed that people should not have to actually leave society in order to receive the basic support they need to live their lives, then it does not make sense to offer needed supportive services outside the community setting. Again, this is not an issue of cost; it is an issue of civil rights. Other than the criminal justice system, we cannot think of another situation where such restrictions take place nor one that tolerates the effective control of one group by another.
In specific response to the points noted in the Executive Summary, the DDQC offers the following comments:
1. From the studies reviewed here, it is clear that large savings are not possible within the field of developmental disabilities by shifting from institutional to community placements. (VOR, 2002)
Placements are not the issue. Most people with mental retardation live with their families and have never lived in institutions. Their families provide for them because of love and necessity. The fallacy that those in institutions are somehow different and “more severely challenging or disabled” is not borne out by the research or by common sense. The question is one of fairness and resource allocation; although those in institutions may have numerous services available, many families are supporting their family member who has severe disabilities with little or no public support. There is also the issue of how the funds are spent. Institutions have their own electricians, plumbers, power plant operators, roads, and maintenance personnel. In the community, those things are there for everyone and are part of rent, taxes, or general citizenship. Community programs concentrate on the people, not buildings.
2. The scope of the present literature review did not allow for the simultaneous review of research on the many clinical and quality of life outcomes but noted the importance of including in policymaking consideration [of] a full range of individual outcomes. (VOR, 2002)
The literature review refutes the argument made by some institutional proponents that economies of scale and centralized services make institutions more economical than community services. The research on outcomes overwhelmingly makes it clear that the outcomes for people in the community are better than those for individuals segregated in institutions (Lakin, 1999). In a well-constructed study, investigators would have looked at both issues simultaneously. Good public policy supports good outcomes and human rights, especially when there is no significant cost advantage to either form of service and support.
3. Clear-cut evidence was not found in the studies reviewed to support the unambiguous conclusion that community services are inherently less expensive than institutional settings. (VOR, 2002)
From the studies reviewed here, it is clear that large savings are not possible within the field of developmental disabilities by shifting from institutional to community placements. Again, the issue of note is that most people with developmental disabilities are not now nor have they ever been in an institution, that institutions are inhumane and violate people's rights, and that there is virtually no demand, except from the small membership of VOR, to keep institutions open or to admit people to them. It is also apparent that approaches such as self-determination and individualized budgeting were not analyzed in the Executive Summary, even though these are the issues of utmost importance. Determining resources that provide what people really want and need, as opposed to a rigid package, should be explored. The Intermediate Care Facility (ICF) program and the myth of something called “active treatment” make assumptions about people's deficits and then designs a program within the confines of the active treatment framework to address them. Active treatment was designed in the early 1970s to deal with the lack of anything positive in the environment in institutions—not as a panacea for a way to help people with developmental disabilities lead lives of meaning.
4. …public policy should not be generalized statements about cost-efficiency, rather, they should revolve around the individual and his/her needs: “What does this person need?” “Where best to provide for these needs?” and “At what cost?” (VOR, 2002)
We agree with this statement. Person-centered approaches, practicing self-determination, and a solid understanding of a person's needs will lead to the best services and supports. When these are present, the setting will not be an institution. Gross comparisons between costs in institutions and the community oversimplify the costs associated with different ways of supporting people in the community. They also ignore the benefits, which study after study have demonstrated is substantially higher in the community.
5. Finally, a factor that has been included only sporadically in the literature or, in some cases, not at all, has to do with the variability in the characteristics of those being served (referred to here as case mix). Individuals with mental retardation and related developmental disabilities are quite heterogeneous with some individuals being nearly indistinguishable from people without disabilities to those who are quite disabled and dependent. Over the period reviewed, it has been typical for a higher proportion of individuals with mild disabilities to live in community settings while people with more complex needs requiring extensive care remained in institutional facilities. (VOR, 2002)
Most people live in the community and always have. Therefore, to compare the cost of most people in the community to a small subset of those remaining in institutions is inaccurate and misleading. The true comparison would be the cost for all people with similar disabilities in the community, including those who receive minimal or no public support.
The DDQC was compelled by moral obligation and commitment to respond to the obfuscation of the real issues generated by the Executive Summary and the subsequent policy interpretations extrapolated by VOR. We are confident that the arguments set forth herein clarify the relevant issues implicit in today's public policy debate regarding supports and services for people with mental retardation and developmental disabilities.
Authors: Steven M. Eidelman, MBA, Executive Director, The Arc of the U.S., 1010 Wayne Ave., Suite 650, Silver Spring, MD 20950 (email@example.com). Renee L. Pietrangelo, PhD, Executive Director, ANCOR, 1101 King St., Suite 380, Alexandria, VA 22314. James F. Gardner, Executive Director, The Council on Quality and Leadership, 100 West Rd., Suite 406, Towson, MD 21204. George Jesien, PhD, Executive Director, AUCD, 8630 Fenton St., Suite 410, Silver Spring, MD 20910. M. Doreen Croser, MA, Executive Director, American Association on Mental Retardation, 444 N. Capitol St., NW, Suite 846, Washington DC 20001-1512 ( firstname.lastname@example.org)