Introduction

Since at least the 1970s, self-advocacy by individuals with developmental disabilities and groups of people has been a growing movement and force for change in the field of developmental disabilities. There are self-advocacy groups in every state, and some states also have statewide self-advocacy networks. Across the states, local and statewide self-advocacy groups face many common challenges. They have used various strategies to confront these challenges in order to develop and sustain a thriving self-advocacy movement. This analysis reviews self-advocacy in six states in order to learn about some of the diverse strategies employed in different states and draw some lessons based on these.

The paper begins by presenting some definitions of self-advocacy. This is followed by a review of some of the background to the self-advocacy movement. The next section presents case studies of self-advocacy in six states, all of which have had some degree of statewide self-advocacy organizing. These case studies are based on interviews with self-advocacy advisors in these states, and review of reports and other documents. In conclusion, lessons are drawn based on the experiences across these states.

Defining Self-Advocacy

Sutcliffe and Simons (1993) suggest that self-advocacy is difficult to define. It means many things, and has grown in complexity over the years. Williams and Shoultz (1982, p. 159) indicate that self-advocacy is about speaking or acting for oneself. It means choosing what is best for you and taking charge of getting it… standing up for your rights as a person. It is a means to give "voice" to those for whom this has historically been denied (Bhavani, 1990). By all accounts, self-advocacy is about individuals with learning and developmental disabilities asserting control and power in their lives.

Self-advocacy can be undertaken both at the individual level and within a group. Self-advocacy on an individual level refers to an expression of feelings and thoughts in an assertive way, making personal choices and decisions, understanding rights, and making changes to ones lifestyle (Sutcliffe & Simons, 1993). Simons (1992) discusses self-advocacy as “a process of individual development through which a person comes to have the confidence and ability to express his or her own feelings and wishes.”

There is an important link between individual acts of self-advocacy and self-advocacy within a group setting. Individuals often learn a great deal about effective advocacy skills and strategies from peers and from group interaction. Self-advocacy, according to Simons (1992), highlights the ability to represent self and others and allows for self-exploration. Self-advocacy also helps individuals explore issues of community integration, service appraisal, and methods of creating change. In 1991, Self-Advocates Becoming Empowered (SABE) provided the following definition written by self-advocates:

“[It] is about independent groups of people with disabilities working together for justice by helping each other take charge of our lives and fight discrimination. It teaches us how to make decisions and choices that affect our lives so we can be more independent. It also teaches us about our rights, but along with learning about our rights we learn responsibilities. The way we learn about advocating for ourselves is by supporting each other and helping each other gain confidence in ourselves so we can speak out for what we believe in.”

The collective aspect of self-advocacy has been the foundation for the burgeoning international self-advocacy movement.

The History of the Self-Advocacy Movement

Although it is difficult to ascertain when the self-advocacy movement officially began, it appears that self-advocacy was formally recognized and defined by people with disabilities in Europe during the late 1960s and early 1970s. One early account describes a small group of people with disabilities in Sweden who developed a list of requests about how their services should be provided. This list was presented to a parent group that supported them. Also in Sweden, several national conferences were held in 1968 and 1970 which began to incorporate the views of people with disabilities (Goodley, 2000, pp. 8-10). News of these conferences began to spread to other countries. By 1972, a similar conference, called “Our Life,” took place in Britain. Canada also chose to hold a conference based upon the models represented in Britain and Sweden. (Williams & Shoultz, 1982, pp. 52-53).

In the United States several support workers from Oregon attended a convention in British Columbia in the early 1970s. Upon their return they met with both disabled and non-disabled individuals and began working toward holding their own state-wide convention. This convention occurred in Otter Crest, Oregon in 1974. An unexpected 560 individuals attended. It marked the beginning of the “People First” movement in the United States. Following this conference, a statewide network called People First of Oregon was established. Members of this network created models for how to develop and run self-advocacy groups.

Subsequent conferences were held in the United States, and more individuals throughout the country became aware of the self-advocacy movement. (Williams & Shoultz, 1982, pp. 53-56). By 1975 there were 16 People First chapters formed in 12 cities. In 1986, and again in 1987, self-advocates came together at national meetings and demonstrated a growing confidence and self-assurance with regard to speaking up about issues of concern to them. For example, participants put a spin on labeling practices in the field of developmental disabilities and wore buttons which displayed “Mildly Normal,” “Moderately Normal,” “Severely Normal,” or “Profoundly Normal.” In 1988, self-advocates in Connecticut held a press conference without the knowledge of facility administrators to challenge practices at the Southbury Training School.

In the early 1990s the self-advocacy movement continued to solidify in the United States. In 1991, over 800 self-advocates met and agreed to form a national organization, Self-Advocates Becoming Empowered (SABE). The country was divided into nine regions, and two representatives were elected from each region (Dybwad & Bersani, 1996, pp.13-15). SABE members engage in advocacy through leadership training, development of materials and resources, testimony to government officials, sponsorship of conferences, and a myriad of other activities (http://www.sabeusa.org/). At the same time, the number of local self-advocacy groups has continued to expand, and by 1995 there were an estimated 600 self-advocacy groups nationally (Dybwad & Bersani, 1996).

Connections between self-advocates in the United States and those in other countries have been maintained over the years as well. In 1984 the first International Self-Advocacy Leadership Conference was held in Tacoma, Washington, and in 1993 approximately 1,300 individuals from 30 countries attended a self-advocacy conference in Toronto (Bersani, 1995).

The self-advocacy movement has become a significant civil rights force for people with learning and developmental disabilities to express themselves as individuals and as a disenfranchised group of citizens. Since self-advocates first spoke on their own behalf, both the movement and its impact on public policy has increased in size and scope. The result is an ever increasing number of empowered individuals who are pursuing self-determined lives and social change within every state across the country.

The growth and development of self-advocacy on a state level has taken various forms. Examination of this development within different states reveals diverse strategies and lessons regarding effective organizing for self-advocacy.

Self-Advocacy Across the United States:
The Experience in Six States

This section describes self-advocacy efforts in six states: Alabama, Connecticut, Kentucky, Minnesota, New York, and Pennsylvania. For each state, a narrative section describes self-advocacy initiatives. The narrative is followed by a summary of challenges and key strategies for success that were identified by the interviewees.

ALABAMA

Self-Advocacy in Alabama began in 1986, when several self-advocacy groups were formed and the first statewide self-advocacy convention was held. These early efforts received financial support from the Knights of Columbus, the state chapter of the American Association on Mental Retardation, and from the Alabama Council for Developmental Disabilities (ADDC). Although these initial organizational efforts lost ground as financial support declined, some groups did continue to meet, and the focus issue for self-advocates in Alabama became deinstitutionalization.

In 2003, self-advocates began a concerted effort to expand the statewide self-advocacy movement and find funding to support this. Initially, they embarked on a leadership training initiative with the expectation that trained leaders would result in the growth of the self-advocacy movement. When these efforts failed to produce significant increase in the statewide movement, attention shifted to grassroots organizing. People First was awarded a grant from the state Office of Consumer Development and the Department of Mental Health and Mental Retardation, and a “return to our roots” campaign was started. Money from this grant allowed for the hiring of a full-time self-advocacy employee. A combined focus on the development of local grassroots groups as well as a statewide self-advocacy organization has resulted in the creation of a network of 20 separate groups that are linked to the statewide organization through a network of five districts. The attention to grassroots organizing has made a significant impact on the growth and viability of the self-advocacy movement in Alabama.

Self-advocates in Alabama have made significant public policy contributions related to the rights of people with disabilities within their state and on a national level. As a state organization, People First has been in the forefront of advocacy for institutional closures. Today, there is only one of four institutions which have not closed. Each year, People First holds a statewide conference which brings together self-advocates from across the state to express their views and to shape their agenda for change. People First also sponsors a day at the state capital, where each of the regions send self-advocate representatives who meet with elected officials from the legislature and are able to directly advocate for their own public policy agenda. Self-advocates are also serving on numerous boards and councils that advise government and agency leadership about decisions which impact the lives of people with disabilities.

Self-advocates in Alabama have also been involved in the Self-Advocacy Synthesis Project which involves teaching self-advocacy skills to school-age individuals (http://www.uncc.edu/sdsp/home.asp), and have worked with the Alabama Disabilities Advocacy Program (ADAP) to create a guidebook to self-advocacy (http://www.adap.net/selfadvocacy.pdf). Both of these activities recognize the importance of being vigilant in maintaining the self-advocacy movement by teaching self-advocacy skills to young people and by outreach to potential new members. Self-advocacy has become a sustainable and active civil rights organization in Alabama though grassroots organizing and by maintaining continued attention to the development and expansion of its base.

Self-advocates from Alabama have had a strong presence in national self-advocacy initiatives. Through their connections with others as a region of SABE, they have combined efforts with a neighboring SABE region to form the Southern Collaborative, enabling them to combine resources in order to sponsor various events and initiatives. Individual members of the local groups attend national conferences and have become involved in SABE’s Project Leadership, which conducts trainings to help inform people about public policy and effective advocacy strategies (http://www.sabeusa.org/). In 2005 People First of Alabama, Advocating Change Together (ACT), and Self-Advocates Becoming Empowered (SABE) held a self-advocacy exhibition in Birmingham which remained on display for six weeks (http://www.bcri.org/exhibitions/special_ exhibitions/ SABE.htm).

Overall, People First of Alabama continues to focus on grassroots organizing while improving the cohesion of their statewide organization, and maintaining an active relationship with the national self-advocacy movement.

Challenges and Barriers:

• For many years there was a high turnover rate of self-advocates and advisors.
• It has been difficult to get state support, due to conflicts of interest.
• On a statewide basis, overemphasis on starting new groups led to lack of emphasis on nurturing existing groups
• People have a hard time finding transportation to meetings, and it can be difficult to find a meeting space.
• There is a lack of funding to support group development.
• Many self-advocacy groups were too closely linked with agencies, and it seemed by some people that they were “extensions” of agencies.
• There has been a degree of resistance from some service providers to help get out the word about self-advocacy.

Successful Strategies

• A development model which concentrated on grassroots organization while simultaneously creating a statewide system had helped strengthen self-advocacy.
• Self-advocates formed relationships with state and governmental officials.
• There was a concentration on developing strong leaders.
• The state association provided support and training opportunities for self-advocates.
• It was very helpful to hire a full-time staff to concentrate solely on the development of self-advocacy.
• A plan was prepared to guide the development of the self-advocacy movement within the state.
• Community members, self-advocates, and advisors collaborated to build and support self-advocacy efforts.

CONNECTICUT

Self-advocacy in Connecticut can be traced back to the mid-1980s. In 1987, there was a nationally recognized conference held in Stamford. Around this same time, self-advocates began to form coalitions within the Southbury Training School. In 1988, individuals who lived in this institutional facility held a press conference to call attention to institutional conditions. This action had the combined effect of raising public awareness about the conditions at Southbury, and motivating other self-advocates to form groups in Connecticut (Dybwad & Bersani, 1996).

In 1989, People First established itself as a statewide organization. People First of Connecticut is supported by WeCAHR (Western Connecticut Association for Human Rights), an educational and advocacy organization that was begun in 1977 as “an association of families and children building communities that respect and welcome people.” People First of Connecticut also receives financial support from the state Department of Mental Retardation and from the local Arc chapters.

The statewide People First organization is comprised of 16 local chapters which meet bi-monthly. People First of Connecticut has become incorporated to increase funding opportunities. Additionally, Connecticut self-advocates have focused on grassroots development in communities throughout the state. In addition to the People First network of self-advocacy groups, there are also many other local self-advocacy groups throughout the state, most of which are supported by local Arcs.

The issues that self-advocates have concentrated on have evolved with the growth of the movement. Early self-advocacy efforts focused primarily on closing institutions. As Southbury Training School is still open, self-advocates are still fighting these battles and continuing working toward closing this facility. On a statewide level self-advocates have concentrated on legislative issues that have particular impact on their lives. They have been instrumental in getting many Arcs across the state to change their name, and they are currently seeking a name change for the Department of Mental Retardation (DMR), and have nearly met success. One of the more recent self-advocacy legislative campaigns was in response to a hate crime which led to the death of a self-advocate in 2003. Self-advocates across the state and country came together to testify and petition for a law to protect people with disabilities which was subsequently adopted in 2004. On the local level, self-advocacy groups determine what issues they will pursue; often, in part, this includes working for improvements in support services.

Another self-advocacy initiative in Connecticut is Kids as Self-Advocates (KASA). This project began in 2002 under the leadership of Connecticut Family Voices with funding from the Connecticut Council on Developmental Disabilities. This group promotes self-advocacy through youth-run meetings, projects, and activities which educate youth, family, and community members on topics such as health care needs, education, employment, and the need to develop independence and self-reliance (http://www.ctkasa.org). The Connecticut Council on Developmental Disabilities also sponsors the Connecticut Disability Advocacy Collaborative. This initiative promotes collaboration between individuals with disabilities, families, and services providers in an effort to create quality services throughout the state (http://www.ct-dac.org/).

Challenges and Barriers:

• In early days when self-advocates first sought to close institutions, they often experienced resistance from many people and did not did not receive significant support from the state.
• There is a generational gap concerning important issues that face self-advocates. This is primarily due to many of the younger self-advocates not understanding the battles associated with institutionalization. Over time, the issues have changed.
• It is sometimes challenging to find advisors who commit to staying with groups for long periods of times.
• There is difficulty coordinating transportation to meetings.
• If there are only a small number of self-advocates in leadership positions, these same individuals are repeatedly recruited to serve on boards and committees, sometimes to the point of exhaustion.
• There is need for more funding.

Successful Strategies:

• The emergence of dedicated and motivated self-advocates and advisors have kept self-advocacy going.
• It has been important to develop good self-advocate leaders and good self-advocate spokespersons. These are not always the same individuals.
• It has been beneficial for self-advocates to become involved in self-determination. Self-advocates have become more empowered when taking control of their services, and they also have been able to assist others to gain more control and choice in their lives.
• Successful self-advocacy groups have identified issues that self-advocates are collectively interested in, and then have made a plan for how to address these issues.
• Self-advocates have felt personally empowered by bringing in speakers who relate to their lives. Some topics have included sexuality, race, leadership, politics, and the like.
• Keeping self-advocates involved socially is very important. People are more motivated if they are also enjoying themselves.

KENTUCKY

Self-advocacy in Kentucky became an established organization in 2001. Ten to fifteen years prior to 2001 there were small groups that made attempts to build self-advocacy but these efforts were not sustainable. Some of these groups were run by parents and agencies rather then by people with disabilities.

In 2001, the Kentucky Developmental Disabilities Council made available funding for a five-year plan to develop self-advocacy within the state. A statewide advisor was hired for this project, and extensive research was completed about self-advocacy. A three-day summit was convened with the involvement of some existing groups and emerging leaders. The purpose of the summit was to develop a plan to guide the growth of the self-advocacy movement over the five-year period. Summit participants included 15 individuals from across the state that had a commitment to self-advocacy. The summit resulted in the decision to form a statewide self-advocacy association. In 2003, a state organization was incorporated and entitled “Kentucky Self-Advocates for Freedom, Inc.” (KYSAFF). This organization recruited advisors, elected, board members, and created bylaws. The organization continues to operate with funds from the KCDD as well as the Kentucky Protection and Advocacy. In addition, many of the local groups have received some financial support from agencies within their communities. KYSAFF is currently trying to become financially independent and sustainable.

Currently, the state system is organized according to the six congressional districts within Kentucky, and there are currently nine local chapters. KYSAFF is governed by a Board of Directors that is comprised of 17 individuals with disabilities from across the state. KYSAFF is still focusing on developing more groups within the congressional districts. In addition to development of this self-advocacy network, there are three other projects that Kentucky self-advocates have become involved in on a state level. The first is the Voter Registration Project where board members are helping people with disabilities register as voters. The second is the Community Impact Program, where many of the chapters meet with community leaders from agencies, businesses, and government to discuss issues of concern and offer suggestions. Lastly, they have been involved in the Provider Training Project where information about self-determination, self-advocacy, and KYSAFF is presented to Goodwill Industries and other provider organizations (http://www.kyselfadvocates.org/).

The self-advocacy movement in Kentucky is still relatively new. The campaign continues to work on the growth and development of the movement throughout the state. KYSAFF has identified the following components in their vision for the future:

a) to have a large, active membership;
b) to be active in statewide issues;
c) to actively connect with other advocacy organizations in Kentucky;
d) to actively address local issues throughout Kentucky via local chapters;
e) to actively connect to self-advocacy organizations in other states;
f) to actively connect to national self-advocacy organizations;
g) to be financially solvent through fund-raising, grant writing, and membership dues.

Challenges and Barriers:

• Securing funds outside of state organizations has been a difficult process.
• Community organizations and other disability organizations are not always willing to support self-advocacy in positive ways.
• Their have been challenges in finding appropriate transportation, advisors, support staff, and locations for meetings.
• There has been resistance within the state to the idea of community living for all.
• There is frequent turnover of self-advocacy leadership at the state level.

Successful Strategies:

• First build strong local groups, then expand to a statewide organization.
• Getting the right people and personalities who are passionately committed to self-advocacy has been very important.
• There have been cases of very dedicated support staff who support many individuals at meetings and conferences.
• Kentucky has remained focused on helping existing groups to remain sustainable.

MINNESOTA

The self-advocacy movement in Minnesota began in the late 1970s, when local People First groups began to develop, primarily alongside Arc chapters. The idea of self-advocacy spread across the state and many local areas formed groups.

Around the same time that the local People First chapters were forming, some individuals who felt their parents were not giving them enough control in decision making which affected their lives came together in 1979 to form a broader organization, Advocating Change Together (ACT). This organization is run by people with disabilities, and encourages and supports self-advocacy efforts. The organization provides information, skill building, and leadership opportunities to individuals with disabilities

ACT has maintained its funding over the years and today supports two full time and three part time staff. ACT is currently funded by grants from foundations and corporations, a contract with the State of Minnesota to provide educational materials, individual gifts, and sales of products and services relating to the development of self-advocacy.

Historically, ACT has been very involved on developing self-advocacy in Minnesota. They have supported several initiatives which have involved self-advocates from across the state. In 1995 ACT began a program entitled Community Vision. This is a leadership training program which brings together self-advocates, service providers, parents, professionals, and other allies together to create a shared vision of the future. Remembering with Dignity is another project involving a coalition of disability rights and advocacy organizations working to honor people who lived and died in Minnesota’s state institutions. ACT also sponsors a program called Music for Social Change. This project brings together self-advocates and other experienced song leaders to create and sing songs which capture the struggles for self-advocacy (http://www.selfadvocacy.com/).

After attending a national conference entitled the Alliance for Full Participation, self-advocates concluded that the lack of support for self-advocacy was a critical issue in Minnesota. A team was formed called the Minnesota Alliance for Full Participation, and they decided to conduct an "environmental scan" (e-scan) in order to determine what was needed to support self-advocacy. The e-scan consisted of 12 qualitative questions and was administered to 35 self-advocates and 12 professionals. The results of the e-scan indicated a need for more stable and consistent funding, as well as the need for a more centralized infrastructure to connect the groups that are scattered across the state.

ACT was then funded by Arc of Minnesota and the Institute on Community Integration at the University of Minnesota to work with the People First groups in order to create a plan for the development of self-advocacy in Minnesota. ACT will also coordinate implementation of this plan. A working group was then created involving self-advocates from ten groups who met in order to identify a framework to create a more unified self-advocacy system. The plan includes the development of six regions across the state. A leadership circle will also be created, and two representatives, an advisor, and an organizer will attend leadership circle events. The regional representatives will be elected from within the regions, and no decisions concerning group participation will be made from the top down. The work that this new plan will undertake includes a state conference, legislative campaigns, media and publicity, a website, templates for fundraising, and leadership development training.
In March, 2006, People First of Minnesota, ACT, Institute on Community Integration, and the Arc of Minnesota sponsored a gathering entitled “The Time is New.” For two days, 74 self-advocates and allies from 19 different groups discussed the past, present, and future of self-advocacy in Minnesota. At this gathering, the plans for continued development of self-advocacy in Minnesota were laid out in order to obtain input and investment from a broader base of self-advocates and self-advocacy groups. Three other community gatherings were also held to present the development plans to additional self-advocates.

Through the programs and materials offered by ACT, as well as the development of People First groups in Minnesota, self-advocacy has become an influential part of Minnesota’s disability history. Minnesota is currently finding new ways to develop a more cohesive network across the state. Self-advocates within and alongside ACT have engaged in work which is continually improving the self-advocacy movement.

Challenges and Barriers:

• Funding is inconsistent. Most of the funding has been from grants which have only supported special projects.
• People involved in self-advocacy become discouraged due to perceived lack of support from the service system.
• Groups tend to gather without proper focus and they often work on issues that are not important to the whole group. This often is a hindrance to membership.
• Development of self-advocacy leaders requires resources. Once leaders are developed, they are often asked to be representatives by a wide variety of organizations. At the same time, there is need for resources from these organizations to help develop additional leaders.

Successful Strategies:

• Teaching self-advocates about the history of disability and the disability civil rights movement is important. This helps self-advocates understand their position in the movement.
• People become considerably more motivated when they are taking part in projects. A focus for the group is important.
• Self-advocates have been successful in increasing membership and getting the community involved by building personal relationships with as many people as possible.
• In early stages of group development it has been important to have groups begin with manageable issues. For example, this may mean tackling the accessibility of a building in the community. As self-advocates find success, and learn new tactics they can then move on to larger issues.

NEW YORK

The early history of self-advocacy in New York State can be traced to several groups which formed in the late 1970s in Central New York and the Bronx. By the mid-1980s, numerous self-advocates from New York were involved in self-advocacy at the national level, as well as the local and state levels. In June 1986 Bernard Carabello founded the Self-Advocacy Association of New York State (SANYS) with a $25,000 grant from the New York State OMRDD. In 1988 SANYS was incorporated, and the following year the New York State Developmental Disabilities Planning Council announced its intention to support the self-advocacy movement with grant funding.

The availability of financial support contributed to efforts to organize on both a grassroots and statewide level. In 1991 the association’s first statewide self-advocacy conference was held in Albany, NY. This conference brought together about 500 participants from 45 different New York State self-advocacy groups. A statewide advisory board comprised of 19 self-advocates representing six regions of the state was formed to insure that self-advocates maintained control of SANYS, the statewide organization (http://www.capital.net/com/sanys/NYS.htm). During this formative period, self-advocates were involved in the movement to close institutions, legislative activities, disability awareness, service expansion, and establishing a network of support.

Currently, the funding for SANYS has increased largely due to a commitment by the NYS Office of Mental Retardation and Developmental Disabilities (OMRDD). SANYS has hired full-time and part-time employees (self-advocates and advisors) across the state to focus on self-advocacy issues and to support local groups by providing training and technical assistance.

Local groups are not incorporated and operate with limited financial support which largely comes from fundraising activities (e.g., raffles, bake sales, etc.). These groups engage in self-advocacy activities in their home communities, provide a level of social and personal support to their members, and are networked throughout the state through the statewide association. Several of the local groups also hold regional self-advocacy conferences, which creates a forum to discuss local issues, and an opportunity for self-advocates to network throughout each region. The ongoing support they receive from SANYS has been critical to their ongoing viability.

Currently, self-advocates in New York State tackle many issues and are involved in many different initiatives locally, throughout the state, and nationally. The priorities of SANYS include:

1. ongoing grassroots organizing to develop new local groups;
2. helping to reenergize and support existing local groups; and
3. provide and share information on topics important to self-advocates

SANYS has involved local self-advocates in a variety of grant-funded and state-sponsored initiatives. One example is the partnership with AmeriCorps. Self-advocates across the state work for AmeriCorps, and provide free presentations to community organizations through local speakers' bureaus. SANYS members provide training and support for individuals who are interested in pursuing self-determination. SANYS also sponsors the annual state self-advocacy conference.

A recent focus of SANYS has been an update of its bylaws. One of the important issues is re-emphasizing the definition of self-advocacy, that control of the self-advocacy group remain in the hands of self-advocates, and that there be a separation from providers. Through the ongoing development of self-advocacy in New York State, and the support that SANYS provides to local groups, self-advocacy has become an active, intricate system in New York that has had an influence on disability policy and practice.

Challenges and Barriers:

• There have been experiences where the balance of control between self-advocates and advisors has not been maintained according to the principles of self-advocacy.
• Some agencies have developed groups where there is not a realistic understanding of the principles of self-advocacy.
• It is difficult to find dedicated volunteers who will stick with self-advocacy groups.
• Transportation to meetings and events is an issue across the state.
• Their have been challenges in getting legislators and other public officials to believe in the goals of self-advocacy.
• It is always a struggle to find and maintain the financial resources needed to support self-advocacy.

Successful Strategies:

• It is important to continually look ahead and to have a strategic plan.
• Successful groups have a variety of activities occurring on an ongoing basis. This can include grassroots organizing, statewide organizing, community efforts, getting out the word about self-advocacy (newspapers, newsletter, television, conferences, etc.), and involving government officials. Membership and participation correlates with engagement in meaningful self-advocacy activities.
• Finding ways to compensate self-advocates for their efforts (e.g., as speakers, trainers, etc.) has motivated and validated self-advocates as essential participants in shaping disability related public policy and service delivery systems.
• It has been important to find people in communities and government who believe in the importance of self-advocacy and are willing to help support the movement.
• The recruitment and development of good self-advocate leaders is very important.
• Support from all levels of the state agency (NYS OMRDD) since the early inception of the movement has been important to the growth and sustenance of the movement.
• Continuous attention to the development and ongoing support needs of the local grassroots groups has been crucial.

PENNSYLVANIA

In the early 1980s, several self-advocacy groups began to form in different parts of the state. Then, in June of 1982, self-advocates from across the state began efforts to hold a conference in King of Prussia, with support from the state Arc. Approximately 100 individuals attended the conference, and the decision was made to create a statewide organization, “Speaking for Ourselves.” In December 1982 another conference was held to focus on expansion of local groups. In 1983, four more chapters began, and yearly conferences were initiated. In 1985, the decision was made that Speaking for Ourselves would become a non-profit corporation, and form a Board of Directors (http://www.speaking.org).

In the 1980s, self-advocates joined with other advocates in a statewide effort to close institutions, resulting in the decision to close Pennhurst in 1987. Self-advocates also partnered with Temple University to help people in sheltered workshops find real jobs. They joined in rallies in Philadelphia and Harrisburg to fight for more funding for people with disabilities, and they worked on issues concerning accessibility and voting.

Speaking for Ourselves was sustained for many years through volunteer efforts, small donations, and grants. The 1990s brought increased visibility of self-advocacy in Pennsylvania, and slow growth continued. The state eventually began to support the state organization with some funding, which included the salary of a full time advisor. Most local chapters, however, have remained self-supportive with independent grant work, fundraising, and volunteer efforts.

In the 1990s, leadership retreats were held, and the state organization began to work with other states. Self-advocates from Pennsylvania helped form the national self-advocacy organization, Self-Advocates Becoming Empowered (SABE). Many areas in Pennsylvania did not have accessible transportation, and improving this became a major focus for self-advocates. In addition, self-advocates become centrally involved in implementing opportunities for self-determination in the state.

Currently, in Pennsylvania, there are nine chapters that are connected to Speaking for Ourselves. The Board of Directors meets quarterly, and there is at least one representative from each of the chapters on the Board. The state conference is important to the association, and attendance has been growing. The association has focused on developing grassroots participation across the state. The state association has also put effort into helping develop leadership. This has involved leadership trainings, meetings, retreats, and leadership recruitment programs. The association has set as their objective complete independence from any service providers, with all meetings held in public spaces and advertised to the entire community. Self-advocacy in Pennsylvania has a rich history, and the efforts of self-advocates continue to be an important factor in promoting independence, control, and choice in Pennsylvania.

Challenges and Barriers:

• For many years there was insufficient funding to support the staffing needs associated with group development.
• Some groups that were funded by grants were not able to focus on issues that they really wanted to due to the expectations that were associated with the grants.
• It was a challenge to secure ongoing funding for groups after short term grants expired.
• Transportation in Pennsylvania for many years was completely inaccessible.
• Many people with disabilities are poor, and they have difficulty donating time, paying for rides, paying for conferences, and even purchasing appropriate clothing for presentations.
• Many agencies and organizations have not been open to sharing power and control with people with disabilities.

Successful Strategies:

• Having a state association to focus on grassroots development.
• Having self-advocates be involved in tackling issues at both the local level and at the state level and making sure that the issues are ones that self-advocates are collectively passionate about.
• Concentrating on developing leadership is important, as good leaders then inspire others.
• Obtaining funding from the state to support self-advocacy. It was a helpful tactic to use numbers to show the state how small a percentage they would need to give to self-advocacy in comparison to other dollars spent on disability services.
• Figuring out long term goals, and making step by step plans to reach the goals.
• Network with organizations that can be helpful such as universities, advocacy groups, and other statewide and national self-advocacy organizations.

Successful State Self-Advocacy Strategies:
Key Issues and Lessons

Based upon the state case studies presented above, several key issues and lessons regarding successful self-advocacy strategies have been identified. These are highlighted below.

1. Grassroots Development of Groups. A commitment to the development of grassroots groups on the local level, and to insuring that these groups receive ongoing support has contributed to the growth and sustainability of self-advocacy.
2. Promoting Leadership Among Self-Advocates. Leadership recruitment and development is a necessary part of a local and statewide strategy.
3. Reliable Financial Support. Groups need a source of reliable financial support. While expenses of local groups are not high, the amount of energy needed to raise funds, especially during formative stages, can drain the energy of the group and take the focus off its self-advocacy mission. Some statewide groups have a high degree of state support from DMR/OMR; others have found it difficult to get state support. While support from the state office can be very beneficial, it can also have drawbacks associated with conflicts of interest. Most have gotten support from diverse sources, including state DMR/OMR, as well as grants from the DDPC, the Arc, and other disability oriented and community oriented organizations. With reliable funding at the state level, some resources and assistance can be channeled down to assist local groups.
4. Maintaining Maximum Independence. It seems that most, if not all, self-advocacy groups need to rely on other organizations for some financial as well as other resources (e.g., meeting space). Overall, however, it is crucial that self-advocacy groups balance their need for support with the need to maintain their independence. Over reliance on other organizations may lead self-advocacy groups to compromise on some of their positions and, as a result, they may become less effective advocacy organizations.
5. Statewide Organization/Network. The availability of a funded statewide organization that is run by self-advocates, supports local grassroots groups, and serves as the link for a statewide and national network helps to sustain the movement, and provides a mechanism to approach funding, staffing, and other resources needs in an economical and coordinated manner.
6. Committed, Skilled Advisors. The availability and ongoing commitment of volunteer advisors to work with local groups is important to the group during both the formative and operation stages of development. It is key that advisors be skilled in advising, but not directing the group.
7. Support for Both New Groups and Existing Groups. It is important to provide training, support, and technical assistance to new groups and, at the same time, ensure that there is ongoing support for existing groups.
8. Focus. Groups need a focus, a way to involve members with purposeful activities, and the experience of having an impact.
9. Transportation. Membership participation requires a commitment of transportation resources for meetings and group related activities.
10. Vision. Local groups and statewide efforts that approach their development with a vision of where they are going and a step by step plan for getting there are more likely to be successful.
11. Cultivating Allies. Finding allies within the community and among public officials is an important strategy on both a local and statewide level.
12. Networking with Other Self-Advocacy Groups. Networking on a regional, statewide, and national level links each group to external supports, and provides opportunities to continuously strengthen and revitalize the group and its leadership.

Resources

Advocating Change Together (ACT) Website: http://www.selfadvocacy.com/

Alabama Disabilities Advocacy Program Website: http://www.adap.net/

Bersani, H. (1995). Leadership: Where we've been, where we are now, where we're going (special feature on leadership by persons with disabilities). Impact, 8, 2-3. (Available from the Institute on Community Integration, 109 Pattee Hall, 150 Pillsbury Drive SE, University of Minnesota, Minneapolis, MN 55455).

Bhavnani, K. (1990). What’s Power Got to do With It? Empowerment and Social Research. In I. Parker and J. Shotter (Eds.), Deconstructing Social Psychology. London: Routledge.

Birmingham Civil Rights Institute, Self-Advocacy Exhibition: http://www.bcri.org/exhibitions/special_exhibitions/SABE.htm.

Charlton, J. (1998). Nothing About Us Without Us: Disability Oppression and Empowerment. Berkeley: University of California Press.

Connecticut Advocacy Disability Collaborative Website: http://www.ct-dac.org/

Connecticut Kids as Self-Advocates Website: http://www.ctkasa.org

Dybwad, G. & Bersani, H.J. eds. (1996). New Voices: Self-Advocacy by People with Disabilities. Cambridge: Brookline Books.

Goodley, D. (2000) Self-Advocacy in the Lives of People with Disabilities. Buckingham: Open University Press.

History of Self-Advocacy in New York State: http://www.capital.net/com/sanys/NYS.htm

Kentucky Self-Advocates for Freedom Website: http://www.kyselfadvocates.org/

Sailing My Own Ship: A Guide to Self-Advocacy. (n.d.). Tuscaloosa, AL: Alabama Disabilities Advocacy Program. Available online at: http://www.adap.net/selfadvocacy.pdf

Self-Advocates Becoming Empowered (SABE) Website : http://www.sabeusa.org/

Self-Advocacy Synthesis Project Website: http://www.uncc.edu/sdsp/home.asp

Speaking Out People First of Alabama Website: http://www.almrservices.org/speakingout.htm

Shapiro, J. P. (1993) No Pity: People With Disabilities Forging a New Civil Rights Movement. New York: Three Rivers Press.

Simons, K. (1992) Sticking Up for Yourself: Self-Advocacy and People with Learning Disabilities. Community Care publication in association with the Joseph Rowntree Foundation.

Speaking for Ourselves Website: http://www.speaking.org

Sutcliffe, J., & Simons, K. (1993). Self-Advocacy and Adults with Learning Disabilities: Contests and Debates. Leicester: National Institute of Adult Continuing Education.

Williams, P., & Shoultz, B. (1982). We Can Speak for Ourselves. Bloomington: Indiana University Press.

Interview Contacts:

Alabama:

• Joe Meadours: Self-Advocate
• Vicki Turnage: Advisor of People First of Alabama

Connecticut:

• Jean Bowen: Advisor of People First of Connecticut

Kentucky:

• Trudy Fletcher: Co-Facilitator of Kentucky Self-Advocates For Freedom

Minnesota:

• Mary Kay Kennedy: Director of Advocating Change Together

New York:

• Steve Holmes: Administrative Director of Self-Advocacy Association of New York State

Pennsylvania:

• Mark Friedman: Long time Advisor of Speaking for Ourselves