NACDD Annual Reports

• NACDD 2006 Annual Report
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• NACDD 2005 Annual Report
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• NACDD 2004 Annual Report 
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Council Chronicles

• Volume 1 Issue 1, April 2004
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• Volume 1 Issue 2, October 2004
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• Volume 2 Issue 1, September 2005
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• Volume 3 Issue 1, January 2006
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MINNESOTA

The Minnesota Governor's Council on Developmental Disabilities received the Minnesota Government IT Recognition Award for its Partners in Policymaking: Developmental Disabilities Leadership Training program., The Partners program was recognized in the special category of State Government to Citizens at the 2007 MN Government IT Symposium. The online Partners training program was also recognized earlier by the Center for Digital Government (www.centerdigitalgov.com), a national research and advisory institute on information technology policies and best practices in state and local government. See the following links for press releases about these awards:

http://www.mncdd.org/news/pdf/News_release-DDC_Digital_Gov_award09-20-07.pdf

http://www.mncdd.org/news/pdf/2007_BOW_DGAA_release.pdf

CALIFORNIA

Sascha Bittner, Chair of the California Council on Developmental Disabilities was one of four individuals honored by KQED, AT&T and Kaiser Permanente in their 2007 Celebration of Disability Culture. Sascha was recognized for making a difference in the lives of people with disabilities. See the following link for information about Sascha and the award:

http://www.kqed.org/topics/history/heritage/disabilityculture/index.jsp

Disability Issues in the News

Cable Network GSN Launches the Without Prejudice Project
This summer, GSN (The Network for Games) will air Without Prejudice?, a groundbreaking new television series that features frank discussions about race, gender, religion, disabilities and a variety of hot button issues. To complement the premiere of the show, GSN is launching the Without Prejudice Project, an initiative designed to help Americans address and combat prejudice in all its forms. The network is working with a coalition of social justice organizations to encourage a national conversation about prejudice in America. To join the conversation, please visit www.gsn.com/withoutprejudice and catch Without Prejudice? every Tuesday at 9PM/8C beginning July 17th.

Disability Advocates Respond To "Ashley Treatment" Designed To Keep Girl Small: http://www.inclusiondaily.com/news/families/ashleyx.htm

Growth Attentuation Issue: Position Statement of the Board of Directors of the American Association on Intellectual and Developmental Disabilities (AAIDD):
http://www.aamr.org/Policies/board_positions/growth.shtml

NACDD letter to the American Society for Pediatrics--Bioethics Division in opposition to growth attenuation as a therapy to assist care giving of children and adults with very severe disabilities.

The National Association of Councils on Developmental Disabilities (NACDD) is a membership organization consisting of the 55 State and Territorial Councils on Developmental Disabilities. The Councils are engaged in systems change, advocacy and capacity building resulting in services and systems that that enable individuals with developmental disabilities to exercise self-determination, be independent, productive, integrated and included in all facets of community life.

The NACDD is adding its voice in opposition to growth attenuation as a therapy to assist care giving of children and adults with very severe disabilities. We fully endorse the thoughtful and thorough position statement issued by the American Association on Intellectual and Developmental Disabilities on this matter (http://www.aamr.org/Policies/board_positions/growth.shtml) and encourage all interested individuals to read it.

NACDD understands the challenges facing families because of the paucity of services and supports in the community and the complexity and restrictions posed on funding and access to home and community based services.

The Seattle Children’s Hospital Doctors Gunther and Diekema administered growth attenuation therapy to Ashley, a 6 year old girl with profound and multiple disabilities. The treatment, given at the request of Ashley’s parents, required an administration of powerful hormones which would halt Ashley’s growth and maintain her small stature, making it easier for her parents to care for her. In addition to this “therapy”, Ashley underwent a hysterectomy and removal of both breast buds to assure that she would not mature sexually. Ashley’s family believed that if Ashley had a small stature throughout her life, it would be easier to take care of her at home and on family outings. The family was also concerned that her growth may eventually result in an out of home placement if they could no longer take care of her.

NACDD agrees with Ashley’s parents that a child belongs at home living with their loved ones during their childhood. Providing care to a person with significant medical and cognitive disabilities is a 24 hour a day job. Family members may need the assistance of professionals to augment their own care giving. Unfortunately, we are experiencing a crisis of care in this country. The availability of competent professionals and the funding to provide adequate wages and benefits to these individuals does not meet the current needs. As a result, a family member may face difficult challenges in keeping their children with them.

History is rife with examples of medical interventions that altered personality or physique because of a perceived non-conformity with the rest of society. People with significant disabilities are a part of the fabric of human life. Their qualities should be honored and respected, and their rights should be recognized and appreciated. There is abundant evidence of the ability of children and adults with cognitive disabilities to learn and live in the community. Federal legislation conveys the values people with disabilities are part of the human experience and should be included in all facets of community life.

NACDD calls upon the State of Washington, Children’s Hospital and Medical Center, other medical institutions and the ethics boards that reside within them to adopt clear requirements. Individuals with disabilities who are unable to advocate for themselves must have an informed and independent advocate who will be included in any process for making treatment decisions that raise the kind of ethical questions similar to those in Ashley’s situation.
NACDD also recommends that a person with a disability be required to serve on a hospital ethics’ board.

Ashley’s treatment has resulted in an important dialogue among people with disabilities, family members, advocacy organizations and physicians. If the result requires changes in policies calling for in-depth reviews, expansion of personal care personnel, protection of human rights, and better understanding of current community practices, it will be most effective for the medical profession, family members, and advocates to work together to make these changes and assure that another family will not have to face a situation similar to Ashley’s.

Sincerely,

NACDD Board of Directors

Becky Harker, President
Althea McLuckie, Vice President

Press Releases

Michael Brogioli appointed Chief Executive Officer of the National Association of Councils on Developmental Disabilities.

Michael Brogioli has been named Chief Executive Officer of the National Association of Councils on Developmental Disabilities (NACDD), a national network of organizations working on behalf of people with developmental disabilities. He will assume his new post on October 1, 2008.

Prior to this appointment, Brogioli served as the Interim Executive Director of the Obsessive Compulsive Foundation in Boston. During previous assignments he was Vice President of Policy and Government Relations for Special Olympics International and Executive Director of the Autism Coalition for Research and Education. Early in his career he was a legislative assistant to United States Senator Tom Daschle.

“Michael’s experience and skills coupled with hands-on experience in federal public policy and organizational coalition building will be a great asset to NACDD. Under his stewardship, NACDD will expand its work with our member Councils, advocating for systemic change for people living with developmental disabilities. His contributions in the areas of nonprofit management, governmental relations and advocacy match the organization’s needs perfectly,” said Becky Harker, President of NACDD.

Commenting on his appointment, Brogioli said, “I am delighted to once again work with and on behalf of people with developmental disabilities. The work of the Councils is so vitally important; it will be a privilege to help lead the Association as we make the case for lasting change to benefit people with disabilities, their families, caregivers and communities.”

Based in Alexandria, Virginia, NACDD is a national, member-driven organization consisting of 55 State and Territorial Councils. NACDD and its member councils advocate for and work towards positive system change on behalf of individuals with developmental disabilities and their families. NACDD is the national voice of the Councils on Developmental Disabilities and supports the Councils in implementing the Developmental Disabilities Assistance and Bill of Rights Act.

Download Official Press Release

Community for All" Tool Kit: Resources for Supported Community Living

The "Community for All" Tool Kit provides the philosophy, policy and research rationale that promotes community supports and services for all people with disabilities.

Also included are personal stories of people who have lived in institutions and resources such as information packets and fact sheets created by self-advocates to close institutions, a list of web sites of interest, a bibliography, and a CD-ROM of all documents included with the kit.

• Planning for Quality Community Supports for Moving Into the Community
• All People can be Supported in the Community
• What’s Wrong with Institutions?
• Quality of Life Outcomes in the Community
• Choice
• State Strategies
• Strategies for Advocates
• Olmstead and Other Legal Resources and more and more

The Tool Kit is a collaborative effort of the following organizations: American Association on Mental Retardation (AAMR), The Arc of the United States, The Center on Human Policy, The Council on Quality and Leadership, National Association of Councils on Developmental Disabilities (NACDD), The University of Minnesota's Research and Training Center on Community Living and TASH.

The "Community for All" Tool Kit may be ordered from the Human Policy Press, Syracuse University for just $25 plus shipping:

Order Form: click here for to open the pdf document

Visit the Tool Kit web site at: http://thechp.syr.edu/toolkit/