The Alliance for Full Participation (AFP) is a coalition of 14 national organizations organized with the purpose of focusing separate constituencies on long-term initiatives for people with intellectual and developmental disabilities. At the current time, AFP is emphasizing employment and real jobs. Current AFP members include the American Association on Intellectual and Developmental Disabilities (AAIDD), American Network of Community Options and Resources (ANCOR), The Arc, Association of University Centers on Disability (AUCD), Autism Society of America (ASA), Association for Persons in Supported Employment (ASPE), Council on Quality and Leadership (CQL), National Association of Councils on Developmental Disabilities (NACDD), National Association of Direct Support Professionals (NADSP), National Association of State Directors of Developmental Disability Services (NASDDDS), NISH, Self Advocates Becoming Empowered (SABE), TASH, and United Cerebral Palsy (UCP).

The AFP evolved from a set of informal relationships. During the late 1990s, representatives from national intellectual and developmental disability associations located in Washington, DC, began to meet and discuss association management and emerging trends in the field of intellectual and developmental disabilities. Following a series of reports in the Washington Post and other major newspapers regarding deaths, neglect, and fraud and abuse in the community services, the Council on Quality and Leadership/National Center on Outcomes Resources (2000) formed the Developmental Disabilities Quality Coalition (DDQC).

The DDQC adapted The Community Imperative (1979); repudiated a report by the Voice of the Retarded on community services (Eidelman, Pietrangelo, Gardner, Jesien, & Croser, 2002); and, with support from the Administration on Developmental Disabilities, organized an invitational national conference at the Wingspread Conference Center in Racine, Wisconsin. The Wingspread Conference (Council on Quality, 2001) focused on the following themes: Public Awareness, Self-Determination, Workforce Development, and Quality Management Systems and concluded with an urgent message that the intellectual and developmental disabilities movement needed to (a) think more broadly, (b) take action through deeper thinking and analysis, (c) find partners and opportunities, (d) organize locally, and (d) act now. These themes have guided AFP and are evident in its emphasis on state teams and community organization; partnerships with business, state, and federal agencies and self-advocates; formation of a national advisory council; and the adaption of the SABE motto—“Just Do It”—for the 2005 AFP Summit. This Summit attracted 2,400 people who gathered in Washington, DC, to support an inclusive life agenda for individuals with developmental disabilities. Prominent among the participants were self-advocates and representatives of state teams.

2011 Summit

In late 2007, the AFP revisited the feasibility of maintaining a national collaborative network and emphasized the importance of national organizations affirming a single positive message about people with developmental disabilities participating in the life of the community. The boards of directors of the participating organizations favorably reviewed a proposal to organize a second event in 2011 and concluded the following: (a) A second summit in 2011 should represent a rallying point for an ongoing initiative. (b) Employment would be the single, focused priority initiative. (c) The AFP would place an increased emphasis on the development and organization of grassroots efforts through its state teams and assist them in recruiting members and focusing their attention on specific areas to promote local employment practice or policy. (d) The period leading up to the summit would be marked by the development of a series of publications, webinars, and resources that would build the capacity and sustainability of state teams.

In 2009, the AFP reincorporated as a 501(c) (3) organization with a mission: “That people with developmental disabilities and their families realize the promise of integration, productivity, independence and quality of life choices.” AFP announced its new campaign, “Real Jobs—It's Everybody's Business,” and established its goal of doubling the employment rate for people with developmental disabilities by 2015 from 22 to 44%. The AFP decided to mark the mid-point of its employment campaign with a national summit scheduled for November 17–19, 2011, in the Washington, DC, area.

In support of this mission and to establish clear goals and objectives around employment, AFP developed the following definition of employment: (a) Employment expectations for individuals with developmental disabilities will be the same as those for people without disabilities. Education settings will assist in raising these expectations by providing information, supports, and job experiences to all students. (b) In all instances the individual will be the focus of the employment process. Discovering interests, experiences, and skills are important facets of the job search. Customization, choice, and individualized and natural supports help ensure job satisfaction and retention. Career development will be a consideration throughout the job process. (c) Employment will be in regular, competitive, and inclusive employment settings. Frequent and ongoing interactions with coworkers and the development of relationships are expected. Compensation will be at least minimum wage, up to the prevailing wage for the work performed. Wages and benefits will be comparable to coworkers performing similar tasks.

The Scorecard

The AFP's initiative to double the employment rate of people with intellectual and developmental disabilities is titled the “National Employment Challenge.” AFP partners and state teams are being asked to establish baseline numbers and develop strategies to double their state's employment rate. To assist the state teams with their benchmarking and recording processes, AFP formed the Professional Advisory Council, which consists of researchers, educators, and practitioners who are national leaders in employment for individuals with disabilities: David Mank, John Butterworth, Suzy Hutcheson, William Kiernan, Wendy Parent, Cary Griffin, Richard Leucking, Charlie Lakin, and Paul Wehman.

This Council recently developed a Scorecard to assist teams in gathering data, analyzing the numbers, and then setting measureable goals and objectives for improving employment practices or policies. The Scorecard is organized into nine sections: (a) annual performance goals with clear benchmarks; (b) Employment First policy; (c) collection and publication of data; (d) strategies to achieve outcomes at the state, local, and regional levels; (e) status of informal collaborations; (f) formal interagency agreements; (g) innovations in employment services; (h) resources for transition-aged youth; and (i) strategies to advance economic self-sufficiency. State teams work together to score these items on a Likert scale from 1 to 5. The state teams' challenge is to improve the numbers and publicize the changes to stakeholders, including policymakers. The Scorecard helps teams focus and establish priorities and evaluate progress.

State teams are taking various approaches to completing their first Scorecard. Several teams have used electronic surveys to distribute the questionnaire throughout the state. Other teams are relying upon their membership base to answer the questions. Data are being gathered from state agencies, such as the Departments of Vocational Rehabilitation and the Departments of Developmental Services. Several states have incorporated their AFP team into the State Employment Leadership Network and are accessing resources from the network. Still others are relying upon the state data project at the Institute for Community Inclusion at University of Massachusetts Boston to obtain their state's numbers and employment trends (http://www.statedatainfo.org).

As of March 2011, 38 state teams were either active or in formation, with the goal of having 100% representation by 2011. The composition of state teams varies widely. Several of them are subsets of Association on Persons in Supported Employment chapters, others are woven into Medicaid Infrastructure Grant activities; several are actively involved in Employment First initiatives, a few are extensions of existing developmental disabilities or employment coalitions, and still others are stand alone groups. Membership is comprised of people with developmental disabilities, local affiliate or chapter representatives associated with the national partners, employers, coworkers, business organizations, service providers, government officials, family members, advocacy organizations, and members of the general community.

The AFP leadership believes that if a state team experiences positive results from its activities, the chances are excellent for sustaining itself after 2015. To build state team capacities, AFP provides assistance through e-mails, an interactive website, quarterly topical webinars, webinars on state team organizing, newsletters, and information and referral services.

State Teams

State teams report their progress through quarterly reports and the Scorecards. Identifying data and interpreting the numbers has been an important activity for many of the state teams because it is generating discussion about the true picture of employment versus segregated services. State teams are now able to describe patterns of employment and resource allocation. Following are several comments received from state teams members about the status of employment in their state and their team's priorities.

Alabama

Alabama noted that it has a comprehensive set of goals established by the Departments of Education, Vocational Rehabilitation, and Mental Health. It is working on an Employment First Policy. The state team wants to encourage the expectations of family members about the viability of employment and advocate for consumer-directed services. It is recommending that teacher training curriculum be adapted to emphasize the importance of quality transition services, advocating for benefits-planning training in the state, and urging a stronger relationship between the Departments of Mental Health, Vocational Rehabilitation, and Medicaid.

Alaska

Alaska's state team is part of a coalition that is urging the state to set a specific target for increasing the number of people with developmental disabilities receiving supported employment services. Currently, the State Department of Developmental Services has a goal to increase the number of developmental disability waiver recipients receiving supported employment services and is tracking the percentage of change in the number of supported employment recipients.

California

This state has employment goals that have not yet been translated into an improvement in service. Currently, there is no unified system for goal setting. Although Employment First is a philosophy, service dollars are not being redirected. This team plans to establish a strategy for rectifying these problems, although the state's fiscal crisis will make progress in the near term difficult. Project Search holds promise for creating new employment opportunities.

Colorado

In this state, clear goals are written, but there has not been action on channeling resources into competitive employment supports and services. Data are frequently misinterpreted and there is movement to go back to a readiness approach to employment. Again in Colorado, Project Search is being promoted and new jobs developed according to its model.

Indiana

The AFP team successfully advocated for a resolution that passed its Developmental Disabilities Commission in late October 2009. The resolution endorses the AFP national challenge and urges further action by the Family and Social Services Administration. Indiana's team website has plans to spotlight 100 individuals who have become employed. An important value of this team is to improve the public awareness of the employability of individuals with intellectual disability.

Iowa

The Iowa state team is an active member of the Iowa Employment First Initiative. Work is centered on redirecting resources that will assure that Employment First policies will turn into quality employment practice. Currently, funding regulations discourage competitive employment. Iowa operates on a strong county system and Polk County does have several successful employment initiatives in progress. This is not consistent throughout the state, however. The rural nature of Iowa makes it difficult to find or create jobs.

Minnesota

The Minnesota state team is entwined with the Employment First coalition, a grassroots group of individuals and organizations who have come together to promote employment. Priorities are associated with improving employer representation, sharing success stories, gathering data to promote policy change, and targeting changes within school systems in order to help ensure that students receive supports that will allow them to choose work or higher education.

New Hampshire

The team is planning to map state employment resources on its website and engage in creative projects that can help self-advocates across the state become fully able to work in their community-based settings versus the sheltered workshops. The team will work with self-advocates and help them look for jobs/career opportunities, gain financial management skills, and offer guidance on how best to find and keep jobs. The state does have employment goals and has established a real time information system that allows job seekers to access their individual information. Admission trends to segregated employment are decreasing.

New York

The state team is part of a statewide coalition that has developed a long list of targets and initiatives related to improving employment. The Office of Mental Retardation/Developmental Disabilities has pledged to double the number of people with developmental disabilities who are employed or engaged in volunteer activities by 2011.

Oregon

New key performance measures have been developed based on an expected 5% improvement in employment by 2011 using baselines established in 2010. Employment First initiatives build consensus and support to strengthen the move to improve employment outcomes. Over the next year, training will be delivered to case managers and personal agents on implementing Employment First.

Virginia

State Employment Leadership Network has assisted the state in obtaining data and in developing a Memorandum of Understanding between the Department of Rehabilitation and the Department of Developmental Services for the purpose of obtaining accurate numbers of those receiving and obtaining employment. Customized Employment training is available throughout the state from Virginia Commonwealth University. This state is also working to replicate Project Search.

Washington

This state has a goal of achieving employment for all since it issued its Working Age Adult Policy in 2004. For over 30 years, Washington has collected and analyzed data and is now working with the Institute for Community Inclusion to package the information for the public. In the spring of 2010, six forums were conducted in Washington about the AFP national challenge, and hundreds of stakeholders attended. Training and technical assistance were provided on how to improve employment outcomes. Each county in the state has a program that is responsible for developing services and supports to fulfill the Working Age Adult Policy, and many associations are bound by formal agreements to affect employment (Department of Rehabilitation, the Department of Developmental Services, and the school systems). The state maintains a best practices website for promoting outstanding employment strategies.

Conclusion

The AFP is combating a pervasive national and local problem—the chronic and debilitating unemployment of individuals with intellectual disabilities. Its work and National Employment Challenge have garnered the attention of federal policymakers, state legislatures, self-advocates, family members, and those who support them. There is no turning back from the declaration of the right to work for all people in our society.

Elizabeth Weintraub, an active member of the Maryland 2005 state team noted,

The Alliance for Full Participation is important, because it is an organization trying to show to society that this country is not just for a certain group of people. Everyone belongs; no matter who you are, and what the type of support you need and want.

Employment is also not for a certain group of people, and our expectation is that our American society will soon come to understand that this is so.

References

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Author notes

Karen F. Flippo, MRA (Karen.Flippo@umb.edu), Senior Technical Assistance Specialist, Institute for Community Inclusion, University of Massachusetts Boston, 100 Morrissey Blvd., Boston, MA 02125-3393. James F. Gardner, PhD, President and CEO, The Council on Quality and Leadership (CQL), 100 W. Rd., Towson, MD 21204.