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National Association of Councils on Developmental Disabilities

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NACDD Annual Reports
Council Chronicles, NACDD Newsletter

National and Local Coverage of Councils

MARYLAND -- Adult students with disabilities trained to become educational aides
WEST VIRGINIA -- Everyday Heroes
IOWA -- Disabled voters are an important constituency
Disability Issues in the News
Press Releases

"Community for All" Tool Kit Information

Computerworld Honors Program Recognizes State Government Reform Initiative and Digital Document Imaging Program

 

 

NACDD Annual Reports

Council Chronicles

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National and Local Coverage of Councils

MARYLAND -- Adult students with disabilities trained to become educational aides

Danielle Oliver obtained her dream job in a child care center as an educational aide after completing training at Howard Community College that was specifically designed for people with cognitive developmental disabilities. This project was started with funds from from the Maryland DD Council and a grant from the Columbia foundation. The Arc of Howard County was also intimately involved with the program's development and implementation. To read more about this new training course, please click on the link below:

http://www.washingtonpost.com/wp-dyn/content/article/2006/12/30/AR2006123000863.html

 

WEST VIRGINIA -- Everyday Heroes

Nine "everyday heroes," graduates of the Court Appointed Special Advocates (CASA) program of the Eastern Panhandle in West Virginia, volunteer their time to help children who have been abused and neglected. The West Virginia DD Council supports this important program that trains volunteers to work with teachers, counselors, the court and others to determine what each child needs and ultimately, to find each child a permanent home. To read more about this project, please click on the following link:

http://www.journal-news.net/News/articles.asp?articleID=5826

 

IOWA -- Disabled voters are an important constituency

Check out the op-ed piece below written by Iowa Executive Director Becky Harker about the importance of people with disabilities casting their votes and then view a .video clip of Senator Harkin quoting her letter on Fox 17 news. The link to the video is located in the blue bulletin board section of the ID Action home page, http://idaction.org under election day news coverage of polling place accessibility. (Be patient as the video may take several minutes to load.)

The Des Moines Register recently published a letter by Becky Harker, Director of the Iowa Council on Developmental Disabilities and President of NACDD, about the importance of people with disabilities voting on November 7. A copy of the text of the letter is also included below.

November 6, 2006

Amid the roar of political advertising and heated debates, the approaching midterm elections could cause increased cynicism regarding our individual roles in the outcome.

As a historically underrepresented and overlooked population, the more than 400,000 voting-age Iowans with disabilities are among those who have questioned their contributions as voters in past elections. But times are changing and this group could soon become one of the state's most influential blocs.

Funding from the federal Help America Vote Act (HAVA) has resulted in a marked increase in the physical accessibility of the state's polling places, and every Iowa precinct now offers voting machines that are fully accessible to people with a variety of disabilities.

Voter turnout among the disability community increased by 11 percent in the 2004 presidential election, closing the gap between voters with disabilities and the general population to just four percentage points; Iowa elections officials attributed the state's high voter turnout to voting by Iowans with disabilities.

In the 2006 midterm elections, voter turnout and absentee ballots will determine which party controls the U.S. House and Senate, the Iowa House and Senate and the Iowa governorship.

Regardless of political party affiliation, the significance of individual responsibility and self-advocacy has never been stronger.

Cast your vote on Nov. 7 to ensure your voice is heard.

Becky Harker,
executive director, Iowa Developmental Disabilities Council;
president, National Association of Councils on
Developmental Disabilities
Des Moines


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Disability Issues in the News

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

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Press Releases


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NACDD Annual Reports

Council Chronicles

If you don't have Acrobat Reader, you can download if for free by clicking on the icon below.

click here to download acrobat reader

return to index

National and Local Coverage of Councils

MARYLAND -- Adult students with disabilities trained to become educational aides

Danielle Oliver obtained her dream job in a child care center as an educational aide after completing training at Howard Community College that was specifically designed for people with cognitive developmental disabilities. This project was started with funds from from the Maryland DD Council and a grant from the Columbia foundation. The Arc of Howard County was also intimately involved with the program's development and implementation. To read more about this new training course, please click on the link below:

http://www.washingtonpost.com/wp-dyn/content/article/2006/12/30/AR2006123000863.html

 

WEST VIRGINIA -- Everyday Heroes

Nine "everyday heroes," graduates of the Court Appointed Special Advocates (CASA) program of the Eastern Panhandle in West Virginia, volunteer their time to help children who have been abused and neglected. The West Virginia DD Council supports this important program that trains volunteers to work with teachers, counselors, the court and others to determine what each child needs and ultimately, to find each child a permanent home. To read more about this project, please click on the following link:

http://www.journal-news.net/News/articles.asp?articleID=5826

 

IOWA -- Disabled voters are an important constituency

Check out the op-ed piece below written by Iowa Executive Director Becky Harker about the importance of people with disabilities casting their votes and then view a .video clip of Senator Harkin quoting her letter on Fox 17 news. The link to the video is located in the blue bulletin board section of the ID Action home page, http://idaction.org under election day news coverage of polling place accessibility. (Be patient as the video may take several minutes to load.)

The Des Moines Register recently published a letter by Becky Harker, Director of the Iowa Council on Developmental Disabilities and President of NACDD, about the importance of people with disabilities voting on November 7. A copy of the text of the letter is also included below.

November 6, 2006

Amid the roar of political advertising and heated debates, the approaching midterm elections could cause increased cynicism regarding our individual roles in the outcome.

As a historically underrepresented and overlooked population, the more than 400,000 voting-age Iowans with disabilities are among those who have questioned their contributions as voters in past elections. But times are changing and this group could soon become one of the state's most influential blocs.

Funding from the federal Help America Vote Act (HAVA) has resulted in a marked increase in the physical accessibility of the state's polling places, and every Iowa precinct now offers voting machines that are fully accessible to people with a variety of disabilities.

Voter turnout among the disability community increased by 11 percent in the 2004 presidential election, closing the gap between voters with disabilities and the general population to just four percentage points; Iowa elections officials attributed the state's high voter turnout to voting by Iowans with disabilities.

In the 2006 midterm elections, voter turnout and absentee ballots will determine which party controls the U.S. House and Senate, the Iowa House and Senate and the Iowa governorship.

Regardless of political party affiliation, the significance of individual responsibility and self-advocacy has never been stronger.

Cast your vote on Nov. 7 to ensure your voice is heard.

Becky Harker,
executive director, Iowa Developmental Disabilities Council;
president, National Association of Councils on
Developmental Disabilities
Des Moines

 

return to index

Disability Issues in the News

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

return to index

Press Releases


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/

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