ADD UPDATE MARCH 2007 www.acf.hhs.gov/prgrams/add March Message from the Commissioner A house with a white picket fence is a symbol of the American dream. It represents self-sufficiency, security, and stability. It brings to mind images of family dinners and backyard parties, of a place to relax at the end of a long day. But for individuals with developmental disabilities, it can be a challenge to find accessible, affordable housing. Without access to safe, long-term housing, individuals and families cannot fully participate in community life. Home can be a retreat and a refuge, but it also serves as the foundation for almost everything we do. Without adequate housing, health and well-being are difficult to achieve. ADD supports programs that offer individuals with disabilities alternatives to institutional living. People with developmental disabilities belong in communities, not in institutions. Individuals with disabilities must have a voice in where and with whom they live, what their surroundings are like, and how they spend their time. Choice is a key component when we consider housing in America for individuals with developmental disabilities. In order to offer broader choices to meet the needs of a diverse community, the pool of accessible and adaptable houses and apartments must be expanded. Grantees across this country are working with communities, architects, and builders to provide education about simple ways that new construction can be adapted to be accessible to all potential residents. Grantees are assisting individuals with developmental disabilities leave institutions and move into communities where they can share spaces, activities, and experiences with their neighbors. Because of grantee activities, services that support community living are being expanded and standards of care are being improved. Additionally, grantees are working to combat homelessness, an issue that continues to be a significant problem in our country. People with developmental disabilities have a higher risk of being homeless compared to the general population. The U.S. Department of Health and Human Services (HHS) has been working on the HHS Strategic Action Plan on Homelessness, for which ADD recently submitted a summary of homelessnessrelated activities undertaken by our grantees. An overview of these activities can be found on page two of this newsletter. On a different subject, page six of this month’s ADD Update addresses another topic that has been grabbing headlines: autism. Last month the Centers for Disease Control released the findings of a major new study on autism. On average, they found that about one in 150 children born in 1992 and 1994, or 6.7 per thousand, have autism. I recently made a presentation to the President’s Council on People with Intellectual Disabilities (PCPID) on autism; a summary of that presentation is included in this newsletter. I N S I D E T H I S I S S U E : Commissioner’s Message 1 Secretary’s Report On Homelessness 2 New Hampshire UCEDD Increases Control in Housing 3 Virginia Council Develops Housing Toolkit 3 Ohio Council Expands Definition of Accessibility 4 DC Council Addresses Housing 5 At HOME with the Louisiana P&A 5 Understanding Autism 6 P&A Sponsors Historic Debate 8 Personal Networks 9 Collaboration in Indiana 10 Spotlight on Self-Advocates 11 Spotlight on ADD Staff 12 ADD Update PAGE 2 HHS Secretary’s Report on Homelessness The following data comes from a report that was submitted by ADD for inclusion in the HHS Strategic Action Plan on Homelessness. This is just a sampling of the many ADD programs included in the report, and of the many ADD programs working to combat homelessness among individuals with developmental disabilities in the United States. ADD’s grantees provide a range of “on the ground” assistance related to individuals and families with disabilities who are homeless. Six examples of this diversity are: The Alaska P&A participates in a monthly outreach/intake with several other agencies at the Anchorage homeless shelter. Every other week it also conducts an outreach/intake at the veterans domiciliary, a facility for homeless veterans. The Colorado P&A is involved with the “Mayor’s Ten Year Plan to End Homelessness” in Denver. It participated in the first National “Homeless Connect” Day which attracted several hundred people. The P&A will make attorneys and advocates available for the next “Homeless Connect” Day. The P&A is part of two-day training for the private bar who will be volunteering their assistance at the June event. The Wyoming P&A has developed a brochure regarding homelessness and voting rights. It also provides a variety of informational materials to persons who are homeless; provides referral services, and has provided legal representation to homeless individuals in employment, discrimination, and abuse/neglect situations. The Michigan UCEDD is working with a coalition in Detroit to identify homeless children and to provide them with services. The UCEDD has determined that there are approximately 2,000 homeless children in Detroit; up to 60% has some type of disability. As part of a coalition it works in the homeless shelters to provide literacy skill training to parents and children. The Kansas P&A (DRC) has for several years been a part of the Kansas Statewide Homeless Coalition's Summit on Housing and Homelessness. In October 2006, DRC conducted a workshop at the Summit in Hutchinson on disability rights for homeless individuals with disabilities. DRC staff attends meetings of the Governor's Mental Health Planning Council's subcommittee on Housing and Homelessness. Coordinators help with credit checks, background checks, section 8 applications, transition from the Rescue Mission, and other housing issues. In addition, DRC advocacy staff work with Independent Living Centers and local housing authorities to find housing for homeless clients/consumers when those issues are part of a disability discrimination case. The California UCEDD provides a coordinator for a shelter-based therapy program that is housed in the University’s mental health department. It sends therapists into two shelters for homeless women and their children to conduct individual, family, and group therapies. Additionally, it provides linkage to the University’s hospital's mental health department for case management, psychiatry services, and psychological evaluations. At one shelter, the UCEDD has conducted a domestic violence prevention group for the women classified as disabled under the HUD definition and their children. The UCEDD is currently conducting a multifamily group that is focused on abuse prevention/risk reduction, in addition to the individual therapy offered to the children and the trauma-focused therapy offered to their mothers. ADD UPDATE PAGE 3 "While the number of people living in institutions and large facilities has decreased, the vast majority of individuals residing "in the community" live in residences owned and controlled by someone else.” New Hampshire UCEDD Increases Control in Housing The New Hampshire UCEDD, the Institute on Disability (IOD), is partnering with a national organization on inclusion to ensure that individuals with disabilities have access to accessible community-based housing. The Center for Housing and New Community Economics (CHANCE) was established in March of 2001. CHANCE's mission is to improve and increase access to integrated, affordable, and accessible housing coordinated with, but separate from, personal assistance and supportive services. CHANCE's purpose is to offer alternatives to approaches that segregate, congregate, and control people with disabilities. The IOD works in all aspects of the center in partnership with ADAPT, a national organization that focuses on promoting services in the community for people with disabilities. The development of community housing and services for people with disabilities has been a major national policy direction for the past 20 years. Unfortunately, the administrative structures supporting community services typically promote congregate and agency controlled approaches to housing and personal assistance services. While the number of people living in institutions and large facilities has decreased, the vast majority of individuals residing "in the community" live in residences owned and controlled by someone else. Housing and personal assistance services are dictated far more often by government and agency preferences than by the needs and desires of persons with disabilities. Current approaches have not assured that people with disabilities are afforded control over, or even a voice in, the most basic decisions regarding where they live, with whom they live, the nature of the assistance they receive, and how they spend their time. ADAPT and the IOD collaborate with a broad coalition of people and organizations concerned with housing, economics, personal assistance services, and advocacy. The coalition includes people with disabilities and their families, as well as people from federal, state, and local agencies. Collaboration between the private and public sectors is encouraged and facilitated. http://www.iod.unh.edu Virginia Council Develops Housing Toolkit The Virginia Council’s Transportation and Housing Alliance (THA) grant to the Thomas Jefferson Planning District Commission brought stakeholders and advocates together with experts in planning, housing, and transportation. During 2006, alliance members developed the THA Toolkit that localities can use to assess needs and plan transportation and housing for people with disabilities in coordination with land use. The Toolkit provides localities and Planning Districts with new opportunities for coordinated needs-based planning and growth. The use of the toolkit is being promoted by the Virginia General Assembly's Disability Commission as a means by which localities can meet comprehensive planning requirements specified in the Code of Virginia §15.22223. Revisions to this Code section, which will be effective July 1, 2007, include a requirement that localities determine and plan for the current and future needs of residents who are elderly or are people with disabilities. The toolkit is also being tested by the Virginia Housing and Development Authority as a possible new market study assessment, which is required of developers that apply for low income housing tax credits. http://www.vaboard.org ADD Update PAGE 4 Blue Print for Accessible Housing Regional Training Project Ohio Council Expands Definition of Accessibility There are as many different kinds of accessibility as there are individuals. To limit our vision of accessibility to a wheelchair ramp is to adopt too narrow a definition. “For some individuals it is not enough to find both affordable and available housing. Some persons with disabilities must also find housing that is accessible to them. To the general public, accessibility means a building that a person who uses a wheelchair can enter. While wheelchair access is certainly essential for those with mobility impairments, accessibility applies to other kinds of modifications.” By expanding our definition of accessible housing, we can expand the opportunity for all individuals to live in community-based housing that meets their needs. For example, to a person who has a hearing impairment, accessibility may mean lights on alarms to make that person’s living space accessible. For an individual with Traumatic Brain Injury (TBI) and short-term memory loss, computer generated reminding systems are currently being researched as viable modifications.” “The availability of accessible rental units is extremely limited. Although federally funded public and private housing complexes are required to make some units accessible to people with disabilities, accessibility requirements are inconsistently enforced, and accessible apartments in designated "elderly only." Complexes are no longer available to non-elderly people with This article was submitted by thedisabilities. Subsidized housing complexes that do rent to people with disabilities often give elderly individuals priority for accessible units.” (Ohio Legal Rights Service March 2002) The purpose of this project is to bring together an estimated 60 or more interested collaborators from Joint Vocational Schools, housing boards and county boards of MR/DD to provide 2-4 regional trainings to educate them on the topic of accessibility. The goal would be that 25% of them would actually build a home, for a total of 15 new homes. The council’s expectation of the activities this project will accomplish include but are not limited to the following: - Train in geographically diverse areas, 2-4 regions including rural & urban. - Provide a one-time training in each area. - Identify both vocational school/building trades contacts and housing board contacts. - Provide a floor plan for homes to be built. - Provide a “materials” contact with corporate sponsor. - Provide ongoing support for these partnerships as they begin building. - Build accessible homes. Ohio DD Council http://www.ddc.ohio.gov/ ADD UPDATE PAGE 5 DC Council Addresses Housing Needs In the District of Columbia, the Council has taken steps to inform and involve the community regarding accessible housing. Two community forums were held as part of the D.C. DDC Quality Assurance Advocacy initiative. Leadership representatives from the DC Housing Authority, DC Department of Housing & Community Development, DC Housing Finance Agency, University Legal Services, DC Office on Human Rights, Affordable Housing Alliance and a private developer served as panelists and addressed over 124 individuals regarding the process for utilizing housing services and alternatives. Discussions focused on accessible and affordable housing and specific questions related to housing and how to make appointments for follow-up if necessary. As a result of these forums, one self advocate with developmental disabilities was able to get the “right” resources communicating to bring to fruition the installation of a much needed elevator in his home. http://dhs.dc.gov/dhs/cwp/view,a,3,q,492383,dhsNav,|30989|.asp At HOME in Louisiana The Louisiana HOMES (Housing Options Made Easy and Simple) Project was funded by the U.S. Department of Housing and Urban Development as a collaborative project among the Louisiana P&A (the Advocacy Center,) the Greater New Orleans Fair Housing Action Center, and the Human Development Center of LSU Health Sciences Center. Due to the catastrophic effects experienced in Louisiana as a result of the two 2005 hurricanes, the goal of this one-year project (January, 2006 - January, 2007) is to more effectively and efficiently meet the ongoing, widespread housing needs of Louisiana citizens, including those with disabilities, as protected by federal, state, and local fair housing laws. The project’s objectives are: 1) to fully inform the public about their rights to safe, affordable, accessible housing under FEMA, the Fair Housing Act, and other local, state and federal laws; 2) to assist people affected by the two hurricanes to find housing that issuitable to their needs; and 3) to assist people to file complaints with HUD and otherwise redress housing discrimination that has occurred in the wake of the two hurricanes The project’s major activities target the following groups displaced by Hurricanes Katrina or Rita, recognizing that these groups may not be mutually exclusive: 1) individuals with disabilities (especially those with sensory impairments, i.e., individuals who are blind, Deaf, or Deaf-blind), their family members, and their service providers; 2) individuals and families from the Vietnamese community; and 3) individuals and families living in FEMA trailer parks. For additional information about this project, please contact the Advocacy Center via telephone at 1-800-960-7705 or email: advocacycenter@advocacyla.org. ADD UPDATE PAGE 6 The following information comes from Commissioner Morrissey’s presentation to the President’s Committee on People With Intellectual Disabilities (PCPID). Startling Statistics - Prevalence: 1 in 150 Births – Center for Disease Control and Prevention 2007 - Fastest-growing developmental disability: Based on statistics from the U.S. Department of Health and Human Services, autism is growing at a startling rate of 10-17 percent per year. At this rate, the prevalence of autism could reach 4 million Americans in the next decade. - In 10 years, the annual cost will be $200-400 billion – Autism Society of America - Cost of lifelong care can be greatly reduced with early diagnosis and intervention - Research is a necessary step in the diagnosis, treatment, and overall care of individuals with Autism Research has focused on - Chemical imbalances - Differences in the brain - Genetics - Problems with the immune system - Food allergies - Exposure to environmental toxins - Thimerisol (a vaccine ingredient) - But to date there is no scientific evidence to support these definitively. - * Interagency Autism Coordinating Committee IACC On November 17, 2006 a meeting was held at the National Institutes of Health. At this meeting IACC members, federal attendees, and invited public attendees convened to evaluate progress being made in autism research. The meeting included: - Updates on federal activities relating to autism - A demonstration of the National Database for Autism Research - Scientific Updates - Evaluation of the IACC Autism Research Matrix Although the cause of autism remains a mystery, ADD and its grantees continue their focus on research and supports in this area. Through such efforts we find hope that one day a cure will be found. Until that time persons with autism will lead productive and fulfilling lives through a variety of pro- ADD UPDATE PAGE 7 (continued from page 6) Diagnosing Autism Spectrum Disorders in Texas (Texas UCEDD) - Study to explore the prevalence of Autism Spectrum Disorder (ASD) in Texas. - Purpose: To develop an objective, research-based understanding of three important issues related to autism: the prevalence, the diagnostic practices, and strategies to establish a tracking system in Texas. Contact: Penny Seay, pseay@mail.utexas.edu Behavioral Intervention in Autism (Massachusetts UCEDD) - Behavioral Intervention focuses on providing rigorous and sustained one-to-one and natural-context treatment to teach developmental skills. These skills include attending, imitation, receptive and expressive language, pre-academic social and self-help skills. - The major objective of this project is to develop web-based instruction software and evaluate the effectiveness of the curriculum in teaching requisite competencies. Contact: Charles Hamad, Charles.Hamad@umassmed.edu Regional Autism Center (Pennsylvania UCEDD) - The Regional Autism Center (RAC) was created to provide comprehensive, coordinated, family-centered care – from accurate diagnosis to the most advanced treatments – and to offer families a repository of knowledge, support and guidance. - The RAC team employs state-of-the-art clinical assessment tools to provide the most definitive diagnosis of ASD. RAC is home to some of the world’s most far-reaching research efforts aimed at understanding the causes of autism and the factors associated with problems. Contact: Susan E. Levy, 215-590-7500 Autism Support, Services, Education, and Training (Utah UCEDD) - The goal of ASSERT is to promote the development of critical communication and social skills so that children will succeed in inclusive school classrooms. - Intervention procedures are data-based, derived from research in applied behavioral analysis, and incorporate validated curriculum materials. Contact: Thomas Higbee, thigbee@cc.usu.edu Increasing Response Diversity in Children with Autism (New York UCEDD) - The specific aim of this project is to establish a standardized research protocol for examining the effects of contingent reinforcement (e.g., praise, preferred items) on increasing the diverse responses displayed by persons with autism and establish reliability on independent and dependent measures. Contact: Deborah A Napolitano, deborah_napolitano@urmc.rochester.edu ADD Update Page 8 Historic Debate in Vermont Vermont Protection & Advocacy has been working for several years to enhance civic participation by people with disabilities through efforts that have ranged from inspecting polling places for accessibility to conducting voter registration at theatrical presentations by self-advocates! Prior to the 2006 election, a conversation between VP&A Director Ed Paquin and Tami Trowell, Family Sign Language Program Director at the Austine School for the Deaf, sparked an initiative to reach out to Vermont’s unique K-12 school for the Deaf and the broader Deaf Community of southern Vermont. At the center of their conversation was a seeming lack of political participation by members of the Deaf Community. Realizing that this was due, at least in part, to the inaccessibility of political events, VP&A and Austine devised a multifaceted project. The first aspect of the project focused on making politics, throughout the Brattleboro community, more accessible to Deaf and Hard of Hearing individuals. In doing so, VP&A coordinated with various community organizations that were planning to host political events in the Brattleboro area and offered to fund American Sign Language interpreters for their events. These efforts were well received and interpreters were provided for major political debates throughout the community. The Town Clerk also provided an ASL interpreter at the local polling place for specified times. In the second part of the project, VP&A coordinated and funded efforts to bring a United States Senate Forum to the Austine School for the Deaf. The first step in the coordination process was to join forces with several of the Brattleboro community’s civic organizations. VP&A was successful in obtaining sponsorship from the following community organizations: the Vermont Center for Independent Living, the League of Women Voters, ALANA Community Organization (dedicated to building inclusive and equitable communities), Democracy for America, and the American Association of University Women. After enlisting these partners, VP&A pitched the event to the candidates. The idea of bringing such a debate to the Deaf Community was embraced and VP&A was ultimately successful in securing the candidates’ participation. Those present at the debate included Republicancandidate Rich Tarrant, Independent candidate, and at the time Congressman, Bernie Sanders, and Libertarian candidate Peter Diamondstone. The forum took place at 7:00 p.m. on October 11th in the gymnasium at the Austine School’s Croker Hall. Prior to the start of the forum, the candidates held campaign rallies on school grounds. Attendees then filed into the gymnasium where chairs were set up to accommodate two hundred and fifty audience members. By the start of the event over three hundred were in attendance, including many Austine students and staff as well as members of the Deaf Community! The event was kicked off with a performance by Austine School students, who signed a silent version of the National Anthem. Once eyes were dried in the audience, Ms. Trowell said a few words relaying the importance of this event and introducing the moderator, Dr. Anne Potter, Director of the Austine School. Dr. Potter is herself Deaf and moderated the event in ASL. Her questions were interpreted to both the candidates and the audience. The candidates’ responses were then interpreted back to Dr. Potter and the Deaf members of the audience. The debate had two segments. During the first, Dr. Potter asked questions of her choice. The second portion consisted of questions from the audience. There were several questions posed on matters ranging from the war in Iraq, to the economy, to issues effecting members of the Deaf Community such as funding for Closed Captioning. Feedback to the spirited debate has verified that a very successful meeting of the Deaf and hearing communities had occurred, building bridges across the unfamiliarity of close neighbors! The morning after the forum, VP&A assisted Tami Trowell in giving a presentation to the middle and high school students at the Austine School. The focus of the presentation was to educate the Deaf community’s youth on the importance of voting. VP&A staff presented students with the facts about how to participate successfully in the political process. Then Tami led an interactive demonstration of the process, which involved students playing the roles of candidates debating, then registering to vote and finally casting ballots in voting booths provided by the Brattleboro Town Clerk! VP&A and the Austine School are proud to have been a part of making these events possible …. and perhaps making a bit of history as well; we believe we have hosted the first US Senate debate to have been held at a school for the Deaf and moderated by a Deaf individual! http://www.vtpa.org. ADD UPDATE PAGE 9 Personal Networks: People, Plans and Possibilities This article originally appeared in Connections, a publication of the Rhode Island DD Council. If your son or daughter has a developmental disability, do you ever wonder what will happen to that child when you're no longer around to help? That's a troubling thought because you know that taking care of someone is not the same as caring about someone. The good news is that you're not alone and there are some parents in Rhode Island just like you who have created a way to help ensure that the kind of caring support you provided during your lifetime can continue when you're not around. Personal Lifetime Advocacy Network of Rhode Island (PLAN) is a two-year-old nonprofit organization run by parents whose sons and daughters have a disability. PLAN can help you organize a personal support network for your son or daughter. The network can include relatives, neighbors, former service providers, teachers; members of faith communities, service clubs, leisure and recreation groups, or anyone else who genuinely cares about your son or daughter. Perhaps you know these people already. But do they know each other? Have they been invited to make a commitment? Caring relationships are the key to safety, security and a good life. Cultivating loving networks for individuals with disabilities is the heart of PLAN's work, says John Susa, president of the organization. Personal networks are not just about the future, they can have a payoff once the commitment process begins and a family's vision starts to unfold. It's an investment John Susa and his wife Connie helped establish PLAN in Rhode Island to create a network for their son Mark who has a disability. The Susas are among the dozen families now participating in the program that John says will add another four families a year through its carefully crafted model for growth. Families pay $1,000 to become members of PLAN and $250 per year thereafter to continue their membership. Families also pay $45 per hour for the work of a facilitator who is hired by PLAN and paid to make things happen. "We hire people to be facilitators based on their knowledge and connections to the community and their compatibility with the individual with a disability," says Susa. PLAN's facilitators have a background in community support and counseling. Several have university degrees. Most have at least two years of college. Network members assume responsibilities which could include monitoring medical care and helping to manage financial affairs; finding housing and helping with moving; and communicating with professional care providers and social workers. Other roles are as simple and varied as holding birthday parties, going shopping, and just spending time together. In addition to creating networks for families, PLAN Rhode Island helps families deal with other issues including estate and financial planning and its relationship to Medicaid, long-term housing security, alternatives to guardianship, and the maintenance of government benefits such as social security. " We tell families that they can expect to spend about $2500 the first year to get their network started and between $1200 and $1500 per year thereafter." Susa says. "While this may seem like a lot to some people, a family's payments really only cover about half of PLAN Rhode Island's expenses." (continued on page 10) There are 15 people in the PLAN network that was created for Mark Susa, (left) who today lives independently with some help. His father, John Susa, is Coordinator of Individual and Family Support for The Paul V. Sherlock Center on Disabilities, The Rhode Island Center of Excellence on Disability Education and Research. "My interests," he says "focus on the long-term effectiveness of supports and services to children and adults with developmental disabilities.” ADD Update PAGE 10 (continued from page 9) A little history According to Susa, a widely known advocate for people with disabilities, PLAN was established here only after his research showed that the concept could be successfully implemented in Rhode Island. There are similar programs operating in nearby Connecticut and Massachusetts and throughout the country. But he says that PLAN of Rhode Island most closely resembles PLAN of Vancouver, which has successfully operated for 20 years and currently hosts 130 networks. It was created by Al Etmanski a former executive director of the British Columbia Association for the Mentally Retarded and a self-proclaimed "recovering social worker" who had hit on a novel idea of care giving: ask people with disabilities what they want instead of simply providing them with services. He and others organized the Vancouver program so that it was concerned not with services and rights but with relationships, since they believed that isolation and loneliness were the biggest issues in the lives of people with disabilities, not the disabilities themselves. The future Susa says that he admires the creative ways the Vancouver program has been able to acquire corporate and foundation sponsors so that families without financial resources can participate. "Over the next 24 months we hope to get funding from foundations and organizations that are interested in our work so that we will be able to offer reduced cost or no cost networks to families who really need and want them." PLAN holds public meetings on a regular basis. All meetings will be held in the offices of the Rhode Island Developmental Disabilities Council, 400 Bald Hill Rd., Suite 515, Warwick Rhode Island. For more information on PLAN, call (401) 785-9541 or email cbsusa@excite.com Collaboration in Indiana Born of an idea to be “just like everyone else,” Darcus Nims and her friends embarked on a 17-year journey to do the “same things everyone else did. It just took a little longer.” The journey began in 1990 when Nims and Betty Williams established Self-Advocates of Indiana (SAI), a statewide self-advocacy group for persons with disabilities. “Speaking for yourself and others… Making hopes, dreams, and needs come true to better our lives,” became the mantra of the Self-Advocates. In the fall of 1997, staff from the Indiana Institute on Disability and Community, Indiana‘s University Center for Excellence in Developmental Disabilities, began a partnership with SAI in an effort to find funding to grow the organization. Over the course of the next year and a half, Nims, Williams, and Institute staff worked to identify priorities and determine strategies to meet these goals. In 1999, this collaborative effort resulted in SAI receiving a $20,000 grant from the Indiana Governor’s Council for People with Disabilities. Nims and Williams immediately began the task of building local SAI chapters across Indiana. Initially, seven towns were targeted. Interested individuals learned skills enabling them to start local self-advocacy groups. Since 1997, Indiana Governor’s Council for People with Disabilities has provided SAI with the financial backing to build their (continued on page 11) PAGE 11 (continued from page 10) their capacity as an organization and as individual self-advocates. As a result of funding support and the work of Indiana Institute staff, SAI now has a Board of Directors, a training team of speakers who address issues related to self-advocacy and self-determination to a variety of audiences from high school students to state entities. SAI was incorporated in 2002 and 17 members currently sit on 16 local and state committees. SAI has their own website (http://www.saind.org/) and has held three statewide advocacy conferences. Featured keynote speakers have included Chester Finn, President, Self-Advocates Becoming Empowered (SABE) and Faith McCormick from the Administration on Developmental Disabilities. Since 2006, Indiana’s Developmental Disabilities Network, comprised of the Indiana Institute on Disability and Community, the Governor’s Council for People with Disabilities, and Indiana Protection and Advocacy Services, have worked to keep SAI’s resources strong, when the organization faced negative trends such as funding cuts, through in-kind support and direct expense coverage. Additional support has been provided by The Arc of Indiana. The Arc serves as fiscal agent for SAI’s grant from the Governor’s Council and hired SAI President, Betty Williams, to serve as The Arc’s Coordinator of Consumer Education and Training. Most recently, SAI and the Indiana DD Network, collaborated to develop a Building Leadership Series project. This five-year endeavor, born out of a crucial unmet need to build leadership and advocacy skills in persons with disabilities, trained 18 persons with cognitive disabilities in year one. The Series consisted of three two-day workshops over the course of three months. The workshops were co-trained by staff from the Indiana Institute on Disability and Community’s Center on Aging and Community and people with disabilities using interactive activities, video, discussion, role play, lectures, and workbooks specifically designed for the project. ADD applauds the Indiana DD Network for its collaborative work with SAI. We believe that collaboration within the grantee networks in each State is key to maximizing success. We encourage you to share your achievements in network collaboration, so that other States might gain inspiration from your ideas. If your State is working on a collaborative project, Spotlight on Self-Advocates At the age of one or two, Chester Finn sat down at his aunt’s piano. Ever since, music has been a major part of his life. He plays “a little bit of everything,” and has a music studio at his home, which is fully equipped with three saxophones, a few keyboards, and a guitar. He likes all kinds of music, and is in particular a fan of Stevie Wonder and the band Earth, Wind, and Fire. Along with his love of music, Finn has a passion for helping individuals with developmental disabilities find harmony in their own lives. For the past ten years, Finn has been employed in the New York State Office of Mental Retardation and developmental Disabilities (soon to undergo a name change) as a special assistant to the Commissioner. A self-advocate himself, Finn provides a voice of experience helping the State to meet the needs of individuals with developmental dis-abilities and their families. In his professional role, Finn meets with families, evaluates policies, and makes recommendations. One of his most notable duties has been his work on an employment program designed to create at least 200 positions for individuals with developmental disabilities at public and private institutions throughout New York. While other supported employment programs provide job coaches, the New York model on which Finn has been working utilizes mentors from within the organization where the individuals works. Additional coaches and supports are available as needed, but the program is built on colleague mentorship. A second component of the program provides employment training for youth transitioning from high school into the working world. In Chester Finn, New York residents can find a solid role model, professionally as well as in self-determination and in life. ADD Update PAGE 12 Spotlight on ADD Staff Last month, in an effort to ensure that our grantees know our staff, ADD debuted a new regular feature in which we will highlight a member of the ADD team. Because not all staff members interact with all grantees on a regular basis, we hope that this new feature will help our grantees become familiar with our staff, and more comfortable contacting the appropriate team member with any issues or questions that may arise. This month, we will use this space to bid a fond farewell to Shirley Redmond—long-time ADD staff member, devoted disability advocate, and constant cheerful presence in our offices. She will be greatly missed, but we wish her all the best as she begins her well-earned retirement. A government employee for 35 years, Shirley has spent her entire adult life and professional career working to improve the lives of individuals with developmental disabilities. Shirley looks forward to a retirement spent volunteering, relaxing at her local Borders, and traveling—particularly continuing to go on cruises. We wish her much happiness, fulfilling volunteer experiences, many good books, and calm seas and warm sunshine. Any grantees who have questions about issues formerly handled by Shirley should contact Mary Beth Greene (mary.greene@acf.hhs.gov). http://www.acf.hhs.gov/programs/add Administration on Children and Families U.S. Department of Health and Human Services Mail Stop: HHH 405D 360 L’Enfant Promenade, S.W. Washington, DC 20447 Phone: 202-690-6590 Fax: 202-690-6904 E-mail: Rebekah.yeager@.acf.hhs.gov Administration on Developmental Disabilities The American dream belongs to everyone. The next ADD Update will focus on Assistive Technology. Please send us your stories and program descriptions by April 15, and tell us what you’re doing in this area. The next two issues of the Update will be dedicated to community inclusion and transportation, respectively, so start preparing your stories now! We’re also looking for self-advocates to profile. If you know of a self-advocate with a story to tell, please nominate him or her by sending an email to Rebekah Yeager at Rebekah.yeager@acf.hhs.gov.