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:/