Web-Based Version 1.1

August 2004

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• Full Copy of Tool Kit - PDF (15 mb)
• Order Form for Tool Kit - PDF

a.    Why this Tool Kit?

b.    How to use this Tool Kit

c.     Shared Statement of Principles

d.    What is an Institution?

e.    What is the Community?

f.     Planning for Quality Community Supports for Moving Into the Community

II. People and Trends (Demographic Issues)

a.     Who are in the Institutions Today?

b.     All People can be Supported in the Community

c.     Trends in Institution Closure

d.     Trends in Deinstitutionalization

a.     What’s Wrong with Institutions?

b.     Cost/Economic Issues

c.     Quality of Life Outcomes in the Community

d.     Choice

e.    Safeguards

f.     Family Issues

IV.    Strategies

a.     State Strategies

b.     Strategies for Advocates

c.     Working with the Media

d.     Position Statements

e.    Olmstead and Other Legal Resources

a.     Personal Stories Collected in Anaheim, CA, May 2004
b.     Stolen Lives Campaign Stories - May 2003, "Seeking Ways Out Together" (S.W.O.T.) Team, Titusville, New Jersey
c.     Liz's Story

a.    Packets Prepared by Groups Advocating For Institution Closure
b.    Web Sites
c.    Bibliography

a.    Author Index
b.    Topical Index

• General information to strengthen real community inclusion.
• Background information for advocates involved in campaigns to close institutions.
• General information on community services, and resources for finding out more.
• Material to counter arguments commonly used by pro-institution advocates.
• Sample position papers, letters to the editor, op-ed pieces, and other materials that can be adapted for your own use.
• Ideas for organizing and advocacy.
• Information about policy and governmental action, and strategies that states can use in closing institutions.

• American Association on Mental Retardation (AAMR) - http://www.aamr.org
• The Arc of the United States - http://www.thearc.org/
• The Center on Human Policy - http://thechp.syr.edu
• The Council on Quality and Leadership - http://www.thecouncil.org
• National Association of Councils on Developmental Disabilities (NACDD) - http://www.nacdd.org/
• The University of Minnesota's Research and Training Center on Community Living - http://rtc.umn.edu/
• TASH - http://www.tash.org

a.     Who are in the Institutions Today?
b.     All People can be Supported in the Community
c.     Trends in Institution Closure
d.     Trends in Deinstitutionalization

• A number of states have not closed any public institutions. These states include: Arkansas, Delaware, Idaho, Iowa, Louisiana, Mississippi, Montana, Nebraska, Nevada, North Carolina, Utah, Virginia, Wisconsin, and Wyoming.
• States which continue to support “an extensive network of public institutions” include: Arkansas, Louisiana, Mississippi, North Carolina, and Virginia.
• In some instances, institution closure has been achieved through transfer of significant numbers of individuals to other institutions.
• One of the major challenges to institution closure is the economic impact on and resistance from local communities and public employee unions.

• Most recently, there has been a slowing of the trend toward deinstitutionalization nationally. From 2001-2003, there was the smallest rate of reduction in institutional size in 30 years.
• Over the years, some of the figures given for deinstitutionalization of public institutions have been misleading, as significant proportions of people were transferred to other types of institutions including nursing homes. 
• Between 1996-2000, the population of people with developmental disabilities in nursing homes increased by more than 100 in six states: Alabama, California, New York, Ohio, Oklahoma, and Virginia. States with the highest per capita utilization rates of nursing facilities were: Arkansas, Indiana, Mississippi, and Oklahoma.
• There is wide variation within states on use of larger settings. For example, in 2000, in 10 states, Arkansas, Georgia, Illinois, Kentucky, Louisiana, Mississippi, New Jersey, Oklahoma, Texas, and Virginia, 40% or more of all persons living in out-of-home residential placement lived in public and private institutional facilities for 16 or more people.
• In 2000, there were 53,913 individuals with developmental disabilities living in residential settings with between 7-15 people. Although these are not typically counted as “institutional” placements, due to their size as well as daily routines and other aspects of life in these settings, many people with disabilities, family members, and advocates consider them to be mini-institutions within the community.
• Deinstitutionalization must be accompanied by provision of necessary community supports. Over the years, some people have been “dumped” into the community without adequate supports. In response, some have focused their energy arguing against deinstitutionalization, while the need is to focus energy on demanding and establishing adequate community supports.

III.    Issues

a.     What’s Wrong with Institutions?
b.     Cost/Economic Issues
c.     Quality of Life Outcomes in the Community
d.     Choice
e.    Safeguards
f.     Family Issues

WHAT’S WRONG WITH INSTITUTIONS?

• Abuse and Neglect - People with intellectual and developmental disabilities are vulnerable to abuse and neglect. These can occur in institutions as well as in the community. However, because of the large numbers of people in institutions and the depersonalization that occurs in large settings, abuse is more common and harder to detect in institutional settings. Experienced advocates talk of a “wall of silence” among institutional staff. Due to inadequate staff and lack of other resources, institutions became places of widespread abuse and neglect. Dick Sobsey, a leading expert on abuse of people with disabilities, says that people who have the best chance of not being abused are those who are fully integrated into the community and surrounded by people who care about them.
• Dehumanization - Within institutions, people have been treated in ways that disregard all human dignity and respect. In many ways, people are thought of more like numbers than as humans. As one example, in the past, many people who were buried in institutional cemeteries had markers with numbers rather than their names.
• Segregation and Isolation from the Community - Institutions cut people off from the mainstream of neighborhood and community life.  Many institutions have been geographically located in rural areas. Even in urban areas, though, institutions have operated on a very self-sufficient basis, with the idea that the institution itself is the “community” for those who live there. Thus, individuals living in institutions have often had little or no opportunity to participate in the life of the community beyond the institution.
• Lack of Human and Civil Rights - People have been confined to institutions for years without any legal reason, only because of the label of “mental retardation.” They have been denied privacy, choice, and control in their lives.
• Lack of Access to Education and Assistive Technology - People in institutions have had very little opportunities to obtain an education and/or acquire skills and competencies that would promote independence. Instead, institutions have fostered dependency and often loss of skills and competencies.
• Lack of Individualization in Services - Institutions do not adapt their services to fit the needs of each individual. Instead, people are forced to fit into the institutional setting.

COST/ECONOMIC ISSUES

There are many myths about the costs of institutional versus community services. Some insist that a person with significant disabilities cannot be served in the community because it would cost too much. Others insist that community services are always less expensive. In reality, the economic issues related to maintaining institutions, as opposed to deinstitutionalization or closure paired with development of quality community services, are complex. Much depends on decisions made at the state level about issues such as infrastructure, community capacity-building, wages of community workers, and the like. Still, research on the economic consequences of institutional downsizing and closure is available and will be summarized in this cover sheet.

Also, it is crucial that costs be viewed in the aggregate—that is, for a large group of people instead of on an individual basis. Making decisions about whether or not someone should live in the community based on the cost of serving that person is like saying that if a person’s services and supports cost more than an arbitrary ceiling amount, he or she is not worth the expense. This goes against everything disability advocates stand for. When costs are aggregated, the average per-person cost is the standard, and it is appreciated that the expenses for some will be higher than the expenses for others. 

Considerations Other than Money

Since 1980, 38 research studies have indicated that people who move into communities from institutions show improvements in daily living skills, community participation, frequency of contact with family members and others in the community, greater choice, and satisfaction (Kim, Larson, & Lakin, 1999). Public money is wisely spent when people grow, learn, become more independent, and enjoy their lives, and studies consistently show that people who move to the community are much more likely to do just those things. Conversely, in institutions, tax dollars are paying for services that are shown to produce poor outcomes for the people served. This is poor public policy. In fact, the states that have closed institutions have done so because it is the right thing to do, not because it would save money.

Comparing Costs

In 2002, states spent an average of $125,746 per public institution resident, as compared with $37,816 per person served in the community through the Medicaid home and community based waiver (HCBS). However, such comparisons can be misleading, in part because the services differ in many respects, such as the amounts or types of support provided and the characteristics of the people served. Most people still live with families, so the costs of 24 hour supports that are provided unpaid by families can make community services look lower for those people.

In studies that looked more closely at the costs of services provided to similar groups of people served in both types of settings, costs of community services ranged from 5% to 27% less than state institutional services provided to similar people. However, a major reason for that difference was that substantially lower wages and benefits are consistently (across states and providers) paid to direct support workers in community service agencies. 

Costs of Closing Institutions

When states close institutions, there is generally a period during closure when more money must be spent. Safety must be ensured in the institution for those who have not yet left, and at the same time there must be expansion of services in the community.  Community service expansion should include the costs of building new or enhanced systems for supporting people with significant disabilities (crisis behavioral response systems, housing and work developers, service coordinators, etc.), as well as one-time expenses for start-up (housing deposits, furnishings, appropriate clothing, etc.). Per-person costs in institutions that are closing go up as people move because institutions have many fixed costs that cannot be reduced. After closure, these costs end. 

One study (Stancliffe, Lakin, Shea, Prouty, & Coucouvanis, in press) compared per diem institutional costs in states that had dramatically reduced or closed institutions between 1988 and 2000 to per diem costs in states that had very minor declines in institutional populations during the same years. This study found that the high-change states had a greater increase in per-person costs in their institutions than did the low-change states. However, their institutional populations declined rapidly, bringing their overall institutional expenditures down over time. Of course, those states that closed institutions had no institutional per diem after closure and were able to spend all of their annual allocation in the community. Additionally, some states have been able to sell their institutional facilities and land, and to use these proceeds to support more people with developmental disabilities in the community.

Cost Savings?

Recent cost comparisons of community and institutional services do not support the position that there are “economies of scale” associated with institutions or that community settings (especially traditional setting such as group homes and sheltered employment) cost less than institutions. These studies also suggest that costs are associated with a state’s traditions as much as with any absolute “cost of service” that can be identified. That is, one state may spend two or three times as much, per person, as another, due to many factors unrelated to the support needs of the individuals being served. It is also important to note that the cost impact of new ways of providing supports, such as consumer-directed services with individual budgets (often referred to as “self-determination”), is just beginning to be studied.  A 2004 Policy Research Brief, Costs and Outcomes of Community Services for Persons with Intellectual and Developmental Disabilities, which was recently published by the Research and Training Center on Community Integration, presents evidence about individual budgets, as does the Spring 2004 IMPACT Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities. States can use their budgets to do what they decide to do.  As advocates, our job is to remind them that all people are entitled to life in the community, and that they can make this a reality if they choose to do so. 

INFORMATION IN THIS SECTION IS BASED ON THE FOLLOWING:

Eidelman, S. M., Pietrangelo, R., Gardner, J. F., Jesien, G., & Croser, M. D. (2003, April). Let’s focus on the real issues. Mental Retardation, 41(2), 126-129.

Kim, S., Larson, S. A., & Lakin, K. C. (1999). Behavioral outcomes of deinstitutionalization for people with intellectual disabilities: A review of studies conducted between 1980 and 1999.  Policy Research Brief, 10(1). Minneapolis: University of Minnesota, Institute on Community Integration. Available: http://ici.umn.edu/products/prb/101/default.html

Kim, S., Larson, S. A., & Lakin, K. C. (2001). Behavioural outcomes of deinstitutionalization for people with intellectual disability: A review of US studies conducted between 1980 and 1999. Journal of Intellectual & Developmental Disability, 26(1), 35-50.

Moseley, C., Lakin, C., & Hewitt, A. (Eds). (2004, Spring). IMPACT: Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities, 17(1). Minneapolis: Institute on Community Integration, University of Minnesota. Available: http://ici.umn.edu/products/impact/171/default.html

Stancliffe, R. J., & Lakin, K. C. (2004, May). Costs and outcomes of community services for persons with intellectual and developmental disabilities. Policy Research Brief, 15(1). Minneapolis: University of Minnesota, Institute on Community Integration. Available: http://ici.umn.edu/products/prb/151/default.html

Stancliffe, R. J., Lakin, K. C., Shea, J. R., Prouty, R. W., & Coucouvanis, K. (in press). The economics of deinstitutionalization. In R. J. Stancliffe & K.C. Lakin (Eds.), Costs and outcomes of community services for people with intellectual disabilities. Baltimore, MD: Paul H. Brookes.

Taylor, S. J. (2003, April). The editor’s perspective on institutional and community costs. Mental Retardation, 41(2), 125-126.

RESOURCE:

Conroy, J. W. (1998, December). Are people better off? Outcomes of the closure of Winfield State Hospital [Final Report (No. 6) of the Hospital Closure Project]. Rosemont, PA: The Center for Outcome Analysis.

INCLUDED WITH THIS SECTION AS BACKUP DOCUMENTS:

Eidelman, S. M., Pietrangelo, R., Gardner, J. F., Jesien, G., & Croser, M. D. (2003, April). Let’s focus on the real issues. Mental Retardation, 41(2), 126-129.

Stancliffe, R. J., Lakin, K. C., Shea, J. R., Prouty, R. W., & Coucouvanis, K. (in press). Excerpts from The economics of deinstitutionalization. In R. J. Stancliffe & K.C. Lakin (Eds.), Costs and outcomes of community services for people with intellectual disabilities. Baltimore, MD: Paul H. Brookes.

Taylor, S. J. (2003, April). The editor’s perspective on institutional and community costs. Mental Retardation, 41(2), 125-126.

QUALITY OF LIFE OUTCOMES IN THE COMMUNITY

Issue

What quality of life improvements are experienced by people who move from institutions into the community? Much research has focused on certain specified “quality of life outcomes.” In order to best understand quality of life outcomes, it is most important to listen to the experiences and perspectives of individuals with disabilities who have lived in the institution and then the community.

What Is Quality of Life

Quality of life is difficult to define; it is different for each person, and depends on personal experience. Goode (1992, p. 3; cited in Taylor, 1994) quotes a definition from the National Institute on Disability and Rehabilitation Research: “the timbre of life as experienced subjectively; one’s feelings about/evaluations of one’s own life…”

There are many ways that people have tried to capture and frame quality of life. One of the most commonly used and referred to today in the field of developmental disabilities is the five “valued experiences” proposed by John O’Brien and Connie Lyle O’Brien (1987). These include: sharing ordinary places and activities; making choices; developing abilities and sharing personal gifts; being respected and having a valued social role; and growing in relationships.

Research on Quality of Life

For research purposes, many different definitions of quality of life have been used. Research studies have examined quality of life across domains such as interpersonal relations, social inclusion, personal development, physical well-being, self-determination, material well-being, emotional well-being and rights.

• There are numerous studies that document positive changes in adaptive behavior for people who leave institutions and move into the community.
• In addition, research reviews have found documentation of positive changes associated with deinstitutionalization.
• Studies focusing on more subjective aspects of quality of life (e.g., self-determination, autonomy, choice, etc.) have also found positive changes.

Quality of Life and the Individual’s Perspective

In order to really understand the difference between quality of life in an institution and in the community, it is necessary to listen to the stories of people who have lived in institutions and in the community. Time after time, these stories document abuse and lack of privacy, choice, and control in the institutions. The stories tell of struggles in the community, as well. However, there is unanimous agreement about the vast improvement of life in the community over life in the institution. For example, Russ Daniels reflects, “Now, I live like a king. I’m happy, I do what I want, go where I want, I can come back when I want.” Similarly, Mark Samis states, “In the past few years, my life has all turned around. Nothing but great things have happened to me since leaving the institution.”

INFORMATION IN THIS SECTION IS BASED ON THE FOLLOWING:

Dagnan, D., Trout, A., Jones, J., & McEvoy, J. (1995). Changes in the quality of life of people with learning disabilities who moved from hospital to live in community-based homes. International Journal of Rehabilitation Research, 18, 115-122.

Daniels, R., & Samis, M. (1995/96). Inside and out: Former residents reflect on their lives. IMPACT: Feature Issue on Institution Closures, 9 (1), 10-11. Minneapolis: Institute on Community Integration, University of Minnesota.

Goode, D. (1992). Quality of life policy: Some issues and implications of a generic social policy concept for people with developmental disabilities. Paper presented at the Annual meeting of the American Association on Mental Retardation, New Orleans.

Kim, S., Larson, S. A., & Lakin, K. C. (1999). Behavioral outcomes of deinstitutionalization for people with intellectual disabilities: A review of studies conducted between 1980 and 1999. Policy Research Brief, 10(1). Minneapolis: University of Minnesota, Institute on Community Integration. Available: http://ici.umn.edu/products/prb/101/default.html

Kim, S., Larson, S. A., & Lakin, K. C. (2001). Behavioural outcomes of deinstitutionalization for people with intellectual disability: A review of US studies conducted between 1980 and 1999. Journal of Intellectual & Developmental Disability, 26(1), 35-50.

Larson, S., & Lakin, K.C. (1989). Deinstitutionalization of persons with mental retardation: Behavioral outcomes. Journal of the Association for Persons with Severe Handicaps, 14(4), 324-332.

O’Brien, J., & Lyle O’Brien, C. (1987). Framework for accomplishment. Lithonia, GA: Responsive Systems Associates.

Pratt, J. (Ed.) (1998). On the outside: Extraordinary people in search of ordinary lives. Charleston, WV: West Virginia Developmental Disabilities Planning Council.

Schalock, R. (2004). The concept of quality of life: What we know and do not know. Journal of Intellectual Disability Research, 48(3), 203-216.

Stancliffe, R. J., & Lakin, K. C. (1998). Analysis of expenditures and outcomes of residential alternatives for persons with developmental disabilities. American Journal of Mental Retardation, 102(6), 552-568.

Taylor, S. J. (1994). In support of research on Quality of Life, but against QOL. In D. Goode (Ed.), Quality of life for persons with disabilities: International perspectives and issues (pp. 260-265). Cambridge, MA: Brookline Books.

Taylor, S. J., & Bogdan, R. (1996). Quality of life and the individual’s perspective. In R. L. Schalock (Ed.), Quality of life: Volume I: Conceptualization and measurement (pp. 11-22). Washington, DC: American Association on Mental Retardation.

Wehmeyer, M., & Bolding, N. (2001). Enhanced self-determination of adults with intellectual disability as an outcome of moving to community-based work or living environments. Journal of Intellectual Disability Research, 45, 371-383.

INCLUDED WITH THIS SECTION AS BACKUP DOCUMENTS:

Daniels, R., & Samis, M. (1995/96). Inside and out: Former residents reflect on their lives. IMPACT: Feature Issue on Institution Closures, 9 (1), 10-11. Minneapolis: Institute on Community Integration, University of Minnesota.

Kim, S., Larson, S. A., & Lakin, K. C. (1999). Behavioral outcomes of deinstitutionalization for people with intellectual disabilities: A review of studies conducted between 1980 and 1999. Policy Research Brief, 10(1). Minneapolis: University of Minnesota, Institute on Community Integration. Available: http://ici.umn.edu/products/prb/101/default.html

CHOICE

1. Choice has been used to justify institutionalization by parents or family members, without regard to the choices or interests of the person with a disability.
2. Choice has been used to justify institutionalization, when the individual who is “choosing” the institution has had no idea what the alternatives would be.
3. Choice has been used to justify “dumping” people in the community without adequate supports. This has sometimes led to reinstitutionalization for the person.
4. Choice has been used to justify placement in mini-institutions within the community, when the individual was not given any alternative choices.

• All people should be presumed competent to make choices about their lives.
• Those individuals who have difficulty expressing their preferences need to be surrounded by a core group of people who know them well to assist with making choices.
• Although family members can play an important role in supporting people with developmental disabilities, they are not entitled to substitute their own interests and wishes for those of people with disabilities.
• Individuals with disabilities do not “choose” institutions or mini-institutions when they have real knowledge and experience of alternatives.
• People with disabilities sometimes make bad choices, as do people without disabilities.  Disability is not a reason for depriving any person from making the same choices other people have the right to make. At the same time, choice should never be used to justify neglect.
• The best safeguard against bad or harmful choices by people with disabilities is a network of trusting, caring relationships. For all people, choice is not typically a solitary activity. It is typically done within the context of a network of close relationships. However, especially due to institutionalization, people with disabilities have been cut off from such networks.

SAFEGUARDS

• Regulations in the field of developmental disabilities create greater bureaucracy.
• Regulations reflect the abuses of the past, and sometimes the present, but limit the potential of the future.
• Regulations encourage investment unnatural environments.
• Regulations foster compliance.
• Regulations place control and power in the hands of regulators, and not people with developmental disabilities and their families.
• Regulations direct attention to concrete and tangible things, and trivialize the most important things in life.

• The best safeguard is personal relationships and social networks beyond the service system. A priority for agency staff and other support workers must be to assist people to build and maintain such community connections.
• People are vulnerable when they have little or no power and control. System reform efforts that enhance people’s power and control will contribute to increased safety.
• Within service agencies, the roles and relationships of staff to the people they support and families must be examined. For example, it is important to ensure that there are a few staff who know each person well.
• As an alternative to the current regulatory framework, people with developmental disabilities and their families should be provided with clear-cut rights and due process mechanisms.
• Abuse claims must be independently and vigorously investigated and people who are found to be abusive must be punished.
• Training of staff is a key to preventing abuse.  The more staff know about how to best support people, the better off people will be.

FAMILY ISSUES

• The most recent research synthesis (and a summary of that synthesis) of parent attitudes about residential placement before and after deinstitutionalization. This synthesis shows that parents who initially opposed community placement for their son or daughter were, for the most part, much more positive about it after their family member had moved, and it offers their suggestions for ways of making the transition more acceptable and comfortable for parents. Even though this synthesis was published in 1991, there has been little research on this topic since then. 
• A paper, written by Sue Swenson of The Arc of the US, that addresses family concerns in a “question and answer” format.

a.     State Strategies

b.     Strategies for Advocates

c.     Working with the Media

d.     Position Statements

e.    Olmstead and Other Legal Resources

STATE STRATEGIES

1. Building a shared vision of “community for all” among many different individuals and groups.
2. Planning that involves a wide variety of individuals who represent different organizations and interests.
3. Closing the front doors. This involves identification of the pathways that lead to institutionalization, and work to provide alternatives. In doing this, some states (e.g., New Hampshire, Michigan) have chosen to focus on children first, and then move on to adults.  Many states have laws eliminating admissions for children or requiring a court to order the admission.
4. Working to increase community supports. This includes identifying and addressing gaps in the community service system and ensuring that there is adequate funding for community services including the availability of very intensive supports for people with significant medical needs or behavioral challenges.
5. Inclusion of people with the most severe disabilities, complex medical needs, and behavioral issues early in deinstitutionalization efforts. This will ensure that lessons are learned about what it takes to support all people in the community.
6. Recognition that there will be compromises associated with institutional closure. For example, during closure, everyone may not have the opportunity to move to the most individualized setting possible right away. However, it is most important that these compromises are recognized, so they can be addressed at a later time. At the same time, it is critical to avoid institutional closure through transfers to other public or private institutions or mini-institutions in the community. Otherwise, nothing will have been accomplished and people will remain at those places for a long time.
7. Recognition that some parents will have great fears about moving their son or daughter from the institution. It is important not to see these parents as “the enemy,” but to work to answer questions and dispel myths. Clear and constant communication is crucial.
8. It is crucial to address workforce issues as part of the institutional closure process. For example, during the closure of Brandon Training School in Vermont, the Vermont Division of Developmental Services made significant effort to assist staff in getting other jobs. At the same time, it is important to be clear that, ultimately, decisions about institutional closure must be based on what is best for people with disabilities (e.g., quality lives in the community) rather than the workforce issues.
9. It is also important to address local community issues related to institutional closure, such as the economic impact of closure as well as future land use. For instance, again, during the closure of Brandon Training School in Vermont, some of the citizens of the community of Brandon were concerned about the economic impact that closure would have upon the community (e.g., on small businesses) as well as what would become of the facility and land around it. The Vermont Division of Developmental Services formed a task force to work with the citizens of Brandon to discuss and address these issues. The facility is now used for multiple purposes including:  real estate developer office, school supervisory union office, senior housing, day care, and a community meeting space. Examples from other states include former institutional facilities that have been converted to use as business/industrial parks and condominiums with golf courses. Again, as with workforce issues, it is important to be clear that decisions about institutional closure must be based on what is best for people with disabilities (e.g., quality lives in the community).
10. States often use public education campaigns as part of their efforts to address community opposition to deinstitutionalization. However, states cannot wait until opposition has been resolved to implement deinstitutionalization. And, experience has shown that community members often become more accepting as they have positive interactions with people with disabilities who are included in their communities.
11. Many states have passed legislation related to zoning so that group homes cannot be excluded from residential neighborhoods based solely on neighborhood opposition. At the same time, states, regions, and localities find that there is virtually no opposition when they develop more individualized alternatives to group homes. In addition, as has been addressed elsewhere in this tool kit, these individualized alternatives offer people with disabilities much greater choice and control in their lives.

• Pull together a coalition of key stakeholders who are willing to learn about and inform others about what has been done elsewhere in regard to institutional closure. Then, inform them on what you know, and let them inform you. This group or coalition can form the basis for your organizing.
• Gather signatures or endorsements for position statements or a statement of principles, and disseminate these to decision-makers (see section on Position Statements). Consider litigation (see section…..)

• Make appointments with the Governor, his or her staff members, and/or heads of state offices, and take a group to these meetings; develop your position and present it succinctly, with backup resource documents that address the most important issues.
• Work as an individual, not as a representative of a nonprofit organization, on the Governor’s political campaign, and make sure his/her staff members know about your organization and its views.
• Write position papers that address major issues that are important in your state (“choice,” for example); offer well-thought-out solutions to state problems. 
• Present information on how other states have achieved closure. Select states that are close to yours in population and other demographics, where possible. You may contact the organizations responsible for this tool kit for this kind of information.
• Make it clear that you represent a large number of people who are not going to go away until your goals have been achieved.
• Find people who are close to the Governor—acquaintances, donors, political supporters, etc.—and help them to convey your message about the importance of closure directly to the Governor.

• Make sure your legislators know who you are and what you represent. Meet with them and their staff members as often as you can, even when there is not a crisis or a specific piece of legislation or political issue currently in front of the legislature.
• Testify when there are legislative hearings related to community services and institution closure.
• Propose legislation, if you have developed a relationship with a legislator who will introduce it.
• As an individual (not as a representative of a tax-exempt organization), work on legislative campaigns, or host a coffee meeting for a candidate in your home.
• Hold forums for candidates, where each answers questions about your issues.
• Send questionnaires to candidates and publish their answers as widely as possible.

• Develop relationships with officials in departments that oversee and fund the services for people with developmental disabilities. Invite them to speak at events you sponsor, or to address your board meetings, for example. If you have disagreements, air them and explain your positions (backing them up with current information and research). 
• Be a source of cutting-edge ideas for state departments. Get on Internet mailing lists that discuss and inform on national trends and great ideas.
• Develop position papers that detail directions policymakers could take. For example, a coalition in New York developed a “most integrated setting” position paper related to Olmstead implementation. The position paper listed changes that could be made in current practice and was distributed to policymakers in several state departments, the Governor, and legislators. It was also endorsed by dozens of organizations and coalitions, and their endorsements were made known to policymakers. The information in this tool kit is tailor-made for this activity.

• Organize people in your community or in the state capitol to plan and put on a public forum in a governmental space (legislative chambers, city council chambers, etc.).
• Invite legislators from your community and other decision-makers to the forum; give them time to respond, but at the end of the evening, after they’ve heard the testimony.
• Plan the testimony so that powerful speakers representing various constituencies are “on” first, followed by audience members who wish to speak (for example, lead off with a parent whose child was once institutionalized and is no longer, followed by a person who once lived in an institution, followed by a university professor who has studied institutions, followed by someone now institutionalized, and so on).
• Make sure all the major issues are addressed by someone.
• Publicize the forum widely.
• Have petitions and/or position statements for people to sign or endorse, along with fact sheets and other materials (see section on position statements).
• Have good moderators who will introduce the evening and the legislators present as well as keep time (2-3 minutes per testifier is best) so the forum stays lively and impassioned.
• Consider videotaping and/or transcribing the forum, and editing these afterwards to present as testimony to state officials and legislators (especially if your forum is not in the capitol).

• http://www.thearc.org/ga/trainmat.html is the training page of The Arc, and covers how a bill becomes law (national), how to be an effective legislative advocate, tips on writing or emailing a member of Congress, how to have a meeting with a legislator or their staff, general tips on working with the media, and how to write a letter to the editor of your local paper
• http://www.tash.org/govaffairs/ has links to help you contact your Senator and/or Representative, along with links to Senate and House Committees that make decisions on policy affecting people with disabilities. 
• http://www.ndss.org/content.cfm has a tab at the top labeled “Advocacy Center.” Click on that for lots of great information for advocates, including tips for advocates, organizing coalitions, interacting with policymakers, and others.
• http://www.disabilitypolicycenter.org/ is the web site of Bobby Silverstein, former principal advisor to Senator Tom Harkins and now Director of the Center for the Study and Advancement of Disability Policy (CSADP). CSADP provides public education, leadership development and training, technical assistance and information dissemination, and conducts action-research and analysis of public policy issues affecting individuals with disabilities and their families.

• Develop events that will interest the media and help you to get the word out, such as a public forum, a candidates’ night, a rally for institution closure, etc. 
• Cultivate specific reporters who have an interest in (or are assigned to cover) your topic.  Make sure they are informed every time something newsworthy is about to occur (your forum, rally, etc.), or has occurred (an allegation of abuse in an institution, for example). Make sure they receive a written statement detailing your position each time you contact them.
• With a group, make an appointment with the editorial board of a local media outlet (e.g., the most well-read newspaper in your area). Present a compelling case for your view of a critical situation (e.g., a proposed bill to re-open an institution). 
• Get stories to the media about a real person who left an institution in your state and is now having a good life in the community, or about a parent or family member who once had misgivings and now is pleased with the results of their family member’s move into the community.
• It is important that families, professionals, advocates and people who left institutions are seen as having one voice. Journalists, like the general public, get sidetracked or confused by infighting between groups. 

• Use your own words--ideas that come directly from you will be most powerful.
• Keep it very brief and to the point--if your newspaper has a word limit, stick to it or they may make it shorter. It will be better to do your own cutting so your most important points are kept.
• One key to getting your letter published is to respond right away to a specific article (or another letter or editorial) that has just been published. Don't wait too long or they may feel your letter is out of date.
• Be sure to include contact information including your name, address, phone number and e-mail address. Often newspaper editors need to call to make sure you are the person who wrote the article. They don't print your phone number or any contact information.
• Your newspaper's letters page should give you an email address or a fax number to use, or you can look on the newspaper's web site, call them, or try these web sites: http://congress.org/congressorg/dbq/media/ or http://capwiz.com/thearc/dbq/media .

• Go to the web site of the Center for an Accessible Society, http://accessiblesociety.org/ , and click on “media” in the box on the left side of the page. There are many resources within this web site, which was created for journalists writing about disability issues. 
• Go to http://www.raggededgemagazine.com/mediacircus/styleguide.htm for a style guide for journalists. The home page of Ragged Edge Magazine , http://www.raggededgemagazine.com/ , leads to all sorts of good articles, such as http://www.raggededgemagazine.com/0199/d199me.htm for tips on working with reporters on your issues or http://www.raggededgemagazine.com/mediacircus/opedtips.htm for tips on writing op-ed pieces that get published.
• Go to the disability section of the Journalists’ Toolbox web site, http://www.journaliststoolbox.com/newswriting/disabled.html , for an enormous number of links and resources, including disability statistics and guidelines for journalists.
• Go to the web site of the National Center on Disability and Journalism, http://www.ncdj.org/ , to http://www.ncdj.org/newsletter.php for their newsletters or to http://www.ncdj.org/styleguide.php for a style guide for journalists.
• Go to the “Resources for Reporters” page of the web site of the Institute on Disability, http://www.iod.unh.edu/reporters-room.html for another style guide for journalists.

• Developing position statements helps to achieve consensus among the members.
• Position statements guide the actions of everyone involved in the organization.
• Organization members evaluate their activities based on whether they fulfill or contradict the organization’s positions.
• Advocates use position statements of their own or of other organizations when they approach legislators and other decision-makers.
• Jointly signed positions allow different organizations to come together in a united front.

• The National Council on Disability report, Olmstead: Reclaiming Institutionalized Lives, can be found at http://www.ncd.gov/newsroom/publications/2003/reclaimlives.htm (abridged and full-length versions both can be downloaded).
• The National Council of State Legislators has a site from which one can access its publications about states’ Olmstead issues and implementation, http://www.ncsl.org/programs/health/Onews.htm and one that can be searched for information on how each state is dealing with long term care: http://www.ncsl.org/programs/health/forum/ltc/LTC_draft.htm
• For the decision itself, go to http://supct.law.cornell.edu/supct/html/98-536.ZS.html
• The Centers for Medicaid and Medicare Services, CMS, presents the position of the federal government at http://www.cms.hhs.gov/olmstead/default.asp
• Freedom Clearinghouse is a project of Free Hand Press, publisher of Mouth magazine. Tap its Olmstead information and find hundreds of strategies, mounds of information, and lots of encouragement: http://www.freedomclearinghouse.org/know/olmstead.htm

• Find a variety of people whose stories should be told. You want to show that everyone can live in the community, so feature stories by people with a variety of challenging circumstances (medical, behavioral, familial, etc.) as well as people without so many challenges.
• Make sure the stories of people who don’t use speech are told. Some such stories can be written by a person who uses augmentative, assisted, or facilitated communication. Others can be told by family members, friends, or direct support workers of people who don’t use speech.
• In the narratives, there is no need to represent the community as a utopia, perfect and without problems. The stories should reflect people’s real lives.
• Many resources can be approached for the purpose of collecting one or more personal stories, if you and your organization don’t have the time to do so. Self-advocacy groups and their advisors are often very willing to work on a project of this type, for example, as are parent groups.  University students and faculty members may wish to collect stories (a graduate student may wish to take this on as a research project, for example). People who work in direct support organizations may be interested in collecting narratives of people with whom they work. And occasionally, a journalist may write an article about one or more people who once lived in an institution. 

a.   Packets Prepared by Groups Advocating For Institution Closure
b.   Web Sites
c.   Bibliography

• Packets prepared by groups advocating for institution closure. We include these as examples of the kinds of information your organization may want to prepare. As you can see, the packets typically are made up of one-page fact sheets on various issues that always come up in debates about institution closure. You may use the information in this tool kit to create your own set of fact sheets.
• A list of web sites that provide more information and resources for your advocacy for institution closure.
• A bibliography of studies, articles, chapters, newsletters, policy briefs, etc. that are included in or that shed light on the issues covered in this tool kit. For other references, see the articles included in the tool kit

Packets Prepared by Groups Advocating for Institution Closure:

• Close the Doors: Campaign for Freedom
• "More Reasons than You Ever Needed for Why the State Centers for People with Developmental Disabilities in Wisconsin Need to Close" and Other Closure materials from People First of Wisconsin
• Shattering Myths Fact Sheets and Other Closure Materials from Maryland Developmental Disabilities Coalition
• "Seeking Ways Out Together" Team (SWOT) Closure Materials

WEB SITES

This list includes web sites that have been listed in different sections throughout this tool kit as well as web sites that can provide more information and resources for your advocacy for institution closure.

Advocacy Center, National Down Syndrome Society
http://www.ndss.org/content.cfm?fuseaction=AdvCen&article=79
Provides many advocacy tools for anyone’s use, including tips for advocates, organizing coalitions, interacting with policymakers, a guide for change agents by Bobby Silverstein, former principal advisor to Senator Tom Harkins and now Director of the Center for the Study and Advancement of Disability Policy (CSADP).

Advocacy Training Materials from The Public Policy Collaboration
http://www.thearc.org/ga/trainmat.html
This is the training page of The Arc, and covers how a bill becomes law (national), how to be an effective legislative advocate, tips on writing or emailing a member of Congress, how to have a meeting with a legislator or their staff, general tips on working with the media, and how to write a letter to the editor of your local paper.

American Association on Mental Retardation (AAMR)
http://www.aamr.org
Explore AAMR, whose mission is: AAMR promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities.

Americans with Disabilities Act/Olmstead Decision, Centers for Medicare & Medicaid Services
http://www.cms.hhs.gov/olmstead/default.asp
The Centers for Medicare and Medicaid Services are the parts of the US Department of Health and Human Services that deal with Medicare and Medicaid. This site provides an official summary of the Olmstead decision, an invitation to give input or ask questions about the decision, letters that have been sent to state Medicaid Directors about the Olmstead decision, and links to other government sites related to the Olmstead decision.

The Arc of the United States
http://www.thearc.org/
Explore the site of The Arc of the United States, whose mission is: The Arc of the United States works to include all children and adults with cognitive, intellectual, and developmental disabilities in every community. Click on Information, then Governmental Affairs, and then Advocacy Center for a host of advocacy tools.

The Arc of the United States Media Guide
http://capwiz.com/thearc/dbq/media
Another useful media guide for journalists.

Assistance with Integrity: The Search for Accountability and The Lives of People with Developmental Disabilities
http://thechp.syr.edu/!integri.pdf
Download this report listed as a resource in the Choice section.

Become an Instant Op-Ed Star! How to Write Opinion Articles that Editors Will Actually Use By Mary Johnson
http://www.raggededgemagazine.com/mediacircus/opedtips.htm
Mary Johnson provides great tips on writing op-ed pieces. You may also want to explore the whole Ragged Edge Magazine site by clicking on “About Us” at the bottom of the page.

Behavioral Outcomes of Deinstitutionalization for People with Intellectual Disabilities: A Review of Studies Conducted Between 1980 and 1999. Policy Research Brief, 10(1). Minneapolis: University of Minnesota, Institute on Community Integration
http://ici.umn.edu/products/prb/101/default.html
Get an online version of the Policy Research Brief contained in the Quality of Life Outcomes in the Community section.

BEYOND THE AP STYLEBOOK: Language and Usage Guide for Reporters and Editors
http://www.raggededgemagazine.com/mediacircus/styleguide.htm
Provides a style guide for journalists.

Capstones Summer 2003 Issue
http://www.thecouncil.org/council/about/Capstones/summer03.pdf
This is a link to the Summer 2003 issue of Capstones, the newsletter of The Council on Quality and Leadership.

Center for an Accessible Society
http://accessiblesociety.org/
Want to know about the ADA, census data on disabilities, and many other disability issues? This site will answer most of your questions.

Center for Health Care Strategies (CHCS)
http://www.chcs.org/info-url_nocat3961/info-url_nocat_show.htm?doc_id=206314
Since 1995, the Center for Health Care Strategies (CHCS) has strived to continuously improve the quality of health and health related services for beneficiaries of our nation's health coverage safety net--Medicaid and the State Children's Health Insurance Program. This page lists and discusses some of their Olmstead work.

Center for the Study and Advancement of Disability Policy (CSADP)
http://www.disabilitypolicycenter.org/
Web site of The Center for the Study and Advancement of Disability Policy (CSADP). CSADP provides public education, leadership development and training, technical assistance and information dissemination, and conducts action-research and analysis of public policy issues affecting individuals with disabilities and their families.

The Center on Human Policy
http://thechp.syr.edu
Web site of the Center on Human Policy.

Centers for Medicare & Medicaid Services
http://www.cms.hhs.gov/medicaid/icfmr/default.asp
This is the CMS web site for the Intermediate Care Facility for People with Mental Retardation Program (ICF/MR).

A Chance to be Made Whole: People First Members Being Friends to Tear Down Institution Walls by People First of Tennessee
http://thechp.syr.edu/pl1st.htm
Abbreviated article by People First of Tennessee on their work on getting other People First members out of institutions.

Closing Brandon Training School: A Vermont story
http://thechp.syr.edu/brandon.htm
Web version of the full report on the closing of Brandon Training School, listed as a resource in the State Strategies section.

Closing the Gap By Zena Naiditch
http://www.equipforequality.org/equalizer_2001closing.html
The newsletter of Illinois’ Equip for Equality covers ADA and Olmstead issues in Illinois, among other things.

CLOSING INSTITUTIONS/SUPPORT FOR COMMUNITY LIVING
http://www.peoplefirstofcanada.ca/archive/pfc/2.html
Resolutions by People First of Canada having to do with institution closure and supporting people to live in the community.

Closing the State Centers for the Developmentally Disabled
http://www.dawninfo.org/advocacy/issues/state_centers.cfm
This page of the Disability Advocates: Wisconsin Network (DAWN) gives the People First Wisconsin position papers on institution closure plus a great deal of information and research about the topic.

Closing State Institutions, The Center for Community Solutions
http://www.communitysolutions.com/store/item.asp?ITEM_ID=78&DEPARTMENT_ID=38
http://www.communitysolutions.com/images/upload/resources/sbmissue44.pdf
Resources by the Center for Community Solutions, an Ohio-based nonprofit focused on policy and system reform.

Closure By Dave Seaton
http://www.winfieldcourier.com/Closure/closure01.html
The closing of the Winfield State Hospital left dozens of developmentally disabled individuals without a home. This is the story of how the movement that closed Winfield came to Kansas and how these individuals found new homes in the Winfield area.

The Community Imperative
http://thechp.syr.edu/community_imperative.html
Endorse, on the web, the Center on Human Policy’s Community Imperative (found in the Position Statements section); see who else has endorsed this national statement of principles.

Community Integration/Medicaid
http://www.napas.org/I-3/I-3-D/community%20integration-medicaid%20home.htm
Contains information about compliance with Olmstead nationwide; includes the text of the decision and much, much more.

Congress.org Media Guide
http://congress.org/congressorg/dbq/media/
Congress.org is a public service of an organization called Capitol Advantage. This page allows one to find media outlets anywhere in the country.

Costs and outcomes of community services for persons with intellectual and developmental disabilities. Policy Research Brief, 15(1). Minneapolis: University of Minnesota, Institute on Community Integration
http://ici.umn.edu/products/prb/151/default.html
Download the Policy Research Brief on costs and outcome of community services.

The Council on Quality and Leadership
http://www.thecouncil.org
The web site of the Council on Quality and Leadership, which provides accreditation, monitoring, evaluation, training, and consultation to human service organizations.

Deinstitutionalization--Keep Focused on How and When, Not Why
http://www.thearclink.org/news/article.asp?ID=610
An article that originally appeared in the Durham Herald-Sun in July, 2003, written by a parent.

Deinstitutionalization of Persons with Developmental Disabilities: A Technical Assistance Report for Legislators
http://www.ncsl.org/programs/health/Forum/pub6683.htm
The web page for the report excerpts in the State Strategies section. The web site of NCSL, the National Conference of State Legislatures, contains a search engine. Try searching with the key words “Olmstead” or “Long Term Care” for other reports of use to advocates and state officials.

Developmental Disabilities Planning Institute
Provides access to research and progress reports on the closure of two New Jersey institutions:
Background on Closure of North Princeton Developmental Center ( http://www.ddpi.njit.edu/ddpi-publications-state-op.htm ) and Background on Closure of E.R. Johnstone Research and Training Center: ( http://www.ddpi.njit.edu/ddpi-publications-state-op2.htm ).

Escape! from Tennessee's DD centers
http://www.mouthmag.com/peoplefirst.htm
A Mouth Magazine article about how People First of Tennessee filed and won lawsuits to close institutions in Tennessee, and how they involved the people living in the institutions in “their own liberation,” in the words of PFT advisor Ruthie May Beckwith.

Essential Lifestyle Planning
http://www.elpnet.net/
The site of the Essential Lifestyle Planning network gives information, news, and articles about Essential Lifestyle Planning.

Family Futures Project
http://www.family-futures.org.uk/index.html
Click on “Planning Tools” for more information on using planning tools such as “Essential Lifestyle Planning,” “Person-Centered Planning,” “PATH,” or “MAPS”

Key Principles of Person Centred Planning, The Family Futures Project
http://www.family-futures.org.uk/Introduction%20to%20PCP.html
The title says it all—this is a very nice description of the key principles of person-centered planning, prepared by the Edinburgh-based project of the Scottish Human Services Trust, Family Futures. Visit other parts of their website to learn more about what is going on in Scotland.

IMPACT: Feature Issue on Behavior Support for Crisis Prevention and Response, 14(1). Minneapolis: Institute on Community Integration, University of Minnesota
http://ici.umn.edu/products/impact/141/default.html
Download the IMPACT Feature Issue on Behavior Support.

IMPACT: Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities, 17(1). Minneapolis: Institute on Community Integration, University of Minnesota
http://ici.umn.edu/products/impact/171/default.html
Download the IMPACT Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities.

Issues and Challenges in Developing Individualized Supports By John O’Brien
http://thechp.syr.edu/nysbisch.htm
Download the article backing up the Planning for Quality Community Services section.

Intermediate Care Facility for People with Mental Retardation Program (ICF/MR), The Centers for Medicare & Medicaid Services (CMS)
http://www.cms.hhs.gov/medicaid/icfmr/default.asp
The web site of the ICF/MR Program Information CMS.

The Journalist’s Toolbox, Disability/Accessibility Resources
http://www.americanpressinstitute.org/content/3738.cfm
Information on disability and accessibility for journalists.

Listen to Me!
http://www.allenshea.com/listentome.html
Provides a workbook for planners.

The Media Edge: Feeding the Beast By Jennifer Burnett
http://www.raggededgemagazine.com/0199/d199me.htm
A Ragged Edge Magazine article about the media and getting your story covered, the way you’d like it covered.

National Association of Councils on Developmental Disabilities (NACDD)
http://www.nacdd.org/
NACDD’s site provides positions, information, links, and more.

National Center on Disability & Journalism
http://www.ncdj.org/index.php
The web site of the National Center on Disability and Journalism (NCDJ), an independent, impartial journalism organization whose mission is to educate journalists and educators about disability reporting issues in order to produce more accurate, fair and diverse news reporting.

NCDJ News
http://www.ncdj.org/newsletter.php
Provides online versions of the NCDJ News.

NCDJ Style Guide
http://www.ncdj.org/styleguide.php
Provides a style guide for journalists.

National Conference of State Legislatures (NCSL) Olmstead Publications
http://www.ncsl.org/programs/health/Onews.htm
Read NCSL’s publications on Olmstead and long term care for information on how and what the states are doing.

National Down Syndrome Society’s Advocacy Center
http://www.ndss.org/content.cfm?fuseaction=AdvCen.Main
This section of the NDSS web site has lots of great information for advocates, including tips for advocates, organizing coalitions, interacting with policymakers, and others.

Office for Civil Rights, New Freedom Initiative – Disability, Most Integrated Setting - The Olmstead Decision
http://www.hhs.gov/ocr/mis.htm
Read the government’s positions on the Olmstead decision, including press releases, grant awards, and much more.

Olmstead: Reclaiming Institutionalized Lives, National Council on Disability
http://www.ncd.gov/newsroom/publications/2003/reclaimlives.htm
Get the full report of the NCD report on the Olmstead decision.

OLMSTEAD v. L. C. - Supreme Court Collection, Legal Information Institute, Cornell University
http://supct.law.cornell.edu/supct/html/98-536.ZS.html
Cornell Law School’s Legal Information Institute presents legal information on the Olmstead decision.

On Choice by Steve Taylor
http://thechp.syr.edu/on_choice.htm
On-line version of the article “On Choice” by Steve Taylor reprinted in the Choice section.

People First of Oregon, Fairview: The Closing Chapter
http://www.open.org/~people1/Fairview/closingcontents.htm
People First of Oregon talks about the closing of Fairview.

Person Centered Planning and Perversion Prevention By Michael W. Smull and Susan Burke Harrison
http://www.allenshea.com/perversion.html
A great article on prevention of perversion of person-centered planning. Describes ways in which what is called “person-centered planning” is misused, and ways in which the process should be implemented.

Public Policy in Action: The Action Starts Here!!
http://www.tash.org/govaffairs/
This is the web site of TASH’s Governmental Affairs division and has links to help you contact your Senator and/or Representative, along with links to Senate and House Committees that make decisions on policy affecting people with disabilities.

Quality Mall – Closing Institutions Store
http://www.qualitymall.org/directory/dept1.asp?deptid=32
A great site for finding materials on or supporting institution closure. Part of the Quality Mall, a site offering person-centered services supporting people with developmental disabilities.

Ragged Edge Magazine Online
http://www.raggededgemagazine.com/
Online version of Ragged Edge Magazine.

Remembering with Dignity: Leadership Through Activism By Jerry Smith
http://www.selfadvocacy.com/Jerry_Smith_article.htm
The story of how self-advocates in Minnesota obtained a $200,000 legislative appropriation in 1997 to begin marking 10,000 graves of people buried in state hospital cemeteries, collected oral histories of people who had lived in Minnesota institutions, and did much more to remember with dignity.

Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2002, University of Minnesota, Research and Training Center on Community Living
http://rtc.umn.edu/risp02/risp02.pdf
Download the 203-page report whose executive summary is given in the section on Who are in the Institutions Today? Gives much data and analysis about state residential institution and community services. Also visit http://rtc.umn.edu/risp/index.html which leads to much of the RTC’s data and information on community living. A rich resource for advocates.

Resources for Reporters
http://www.iod.unh.edu/reporters-room.html
The Institute on Disability’s guide for reporters; well worth visiting.

Revisiting Choice – Part 1 & Part 2 - By Michael Smull
http://www.elpnet.net/choice.html
The web site for the article included in the Choice section.

Safeguards [Policy Bulletin No. 3]
http://thechp.syr.edu/bullsafe.htm
The Center on Human Policy’s bulletin on Safeguards is on the web.

Self-Advocates Becoming Empowered
http://www.sabeusa.org/
Web site of SABE, Self-Advocates Becoming Empowered.

State Long-Term Care: Recent Developments and Policy Directions 2003 Update – National Conference of State Legislatures (NCSL) http://www.ncsl.org/programs/health/forum/ltc/LTC_draft.htm
Download the NCSL report that examines the specific measures taken by each state in their efforts to reform long-term care.

The State of the States in Developmental Disabilities
http://www.cu.edu/ColemanInstitute/stateofthestates/
Download the new State of the States in Developmental Disabilities Study Summary 2004 ( http://www.cu.edu/ColemanInstitute/stateofthestates/summary_2004.pdf ), and examine profiles of disability services in the US, state by state.

Steve Gold’s Treasured Nuggets of Information
http://www.stevegoldada.com/
Steve Gold is an attorney in Philadelphia who shares tools on how to enforce the ADA with an emphasis on the topics of housing, medical assistance/Medicaid, nursing homes, and education.

Stuff to know about... The Olmstead Decision, Freedom Clearinghouse
http://www.freedomclearinghouse.org/know/olmstead.htm
Check this site for great ideas of things to do to implement the Olmstead decision.

TASH
http://www.tash.org
The web site of TASH, which supports the inclusion and full participation of children and adults with disabilities in all aspects of their communities as determined by personalized visions of quality of life.

Testimony to: The Special Committee on Appropriations/Ways and Means Senator Morris, Chair, Representative Neufeld, Vice Chair. September 22nd, 2003
http://www.kacil.org/tm9-22-03.htm
Provides some compelling testimony in favor of closing the remaining two Kansas institutions, including studies, moral arguments, and more.

Top 10 Arguments Against Closing an Institution
http://www.open.org/~people1/articles/inst_arguments_against_closing.htm
People First of Oregon gives answers to the top arguments against institution closure.

Towards Person Centred Approaches
http://www.valuingpeople.gov.uk/pcp.htm
This is a site of the Valuing People Support Team in the United Kingdom. It describes several different person-centered planning approaches.

The University of Minnesota's Research and Training Center on Community Living
http://rtc.umn.edu/
The home page of the RTC on Community Living.

What can we count on to make and keep people safe? Perspectives on creating effective safeguards for people with developmental disabilities
http://thechp.syr.edu/CountOn.pdf
Web site of the document reprinted in the Safeguards section.

BIBLIOGRAPHY

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Blatt, B. (1981). In and out of mental retardation: Essays on educability, disability, and human policy. Baltimore: University Park Press.

Braddock, D. (Ed.). (2002). Disability at the dawn of the 21st century and the state of the states. Washington, DC: American Association on Mental Retardation.

Braddock, D., & Heller, T. (1985, August). The closure of mental retardation institutions I: Trends in the United States. Mental Retardation, 23 (4), 168-176.

Braddock, D., Hemp, R., Rizzolo, M. C., Parish, S., & Pomeranz, A. (2002). Table 2.5: Completed and in-progress closures of public institutions. In D. Braddock (Ed.), Disability at the dawn of the 21st century and the state of the states (pp. 93-94). Washington, DC: American Association on Mental Retardation.

Campaign for Freedom Team. (2000). Out of institution & you’re home: Success stories. Plymouth Meeting, PA: Speaking for Ourselves.

Center on Human Policy, Syracuse University. (1979). The Community Imperative: A refutation of all arguments in support of institutionalizing anybody because of mental retardation.  Syracuse, NY: Author.  Available: http://thechp.syr.edu/community_imperative.html

Centers for Medicare & Medicaid Services. (2004). Intermediate Care Facility for People with Mental Retardation Program (ICF/MR). Available: http://www.cms.hhs.gov/medicaid/icfmr/default.asp

Cheek, M. (2001, Spring). Serving persons with MR/DD who are involved with state criminal justice systems. In R. H. Hanson, N. A. Wiesler, & K. C. Lakin (Eds.), IMPACT: Feature Issue on Behavior Support for Crisis Prevention and Response, 14(1), 22-23. Minneapolis: Institute on Community Integration, University of Minnesota. Available: http://ici.umn.edu/products/impact/141/default.html

Community Integration/Olmstead Compliance Information and Resources, Basic Information.  (n.d.). Washington, D.C.: National Association of Protection and Advocacy Systems (NAPAS). Available: http://www.napas.org/olmsteadbasic.htm

Conroy, J. W. (1998, December). Are people better off? Outcomes of the closure of Winfield State Hospital [Final Report (No. 6) of the Hospital Closure Project]. Rosemont, PA:  The Center for Outcome Analysis.
 
Covert, S. B., MacIntosh, J. D., & Shumway, D. L., (1994). Closing the Laconia State School and Training Center: A case study in systems change. In V. J. Bradley & B. Blaney (Eds.), Creating individual supports for persons with developmental disabilities (pp. 197-211). Baltimore, MD: Paul H. Brookes Publishing Co.

Crossley, R., & McDonald, A. (1980). Annie’s coming out.  Australia: Penguin Books.

Dagnan, D., Trout, A., Jones, J., & McEvoy, J. (1995). Changes in the quality of life of people with learning disabilities who moved from hospital to live in community-based homes. International Journal of Rehabilitation Research, 18, 115-122.

Daniels, R., & Samis, M. (1995/96). Inside and out: Former residents reflect on their lives. IMPACT: Feature Issue on Institution Closures, 9(1), 10-11. Minneapolis: Institute on Community Integration, University of Minnesota.

Davis, D., Fox-Grage, W., & Gehshan, S. (2004).  Deinstitutionalization of persons with developmental disabilities: A technical assistance report for legislators.  Denver & Washington, D.C.: National Conference of State Legislatures.  Available: http://www.ncsl.org/programs/health/Forum/pub6683.htm

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VII.    Index

a.    Author Index
b.    Topical Index

AUTHOR INDEX

(Index of Authors of Documents Backing up Sections Listed in the Table of Contents)