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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
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
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Disability Advocates Respond To "Ashley Treatment" Designed To Keep Girl Small: http://www.inclusiondaily.com/news/families/ashleyx.htm
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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White House Proclaims November National Family Caregivers Month
Kensington MD: “Each year during National Family Caregivers Month, we celebrate all those who dedicate themselves to caring for others and recognize their efforts to comfort and improve the lives of their loved ones in need,” according to today’s White House proclamation of November as National Family Caregivers Month.
According to the National Family Caregivers Association (NFCA), over 50 million people provide more than $306 billion dollars in “free” caregiving services every year. And family caregivers provide more than 80% of all long term care services. American businesses can lose more than $33 billion each year due to employees’ need to care for loved ones 50 years of age or older.
"This year we are encouraging people to speak up during National Family Caregivers Month." said Suzanne Mintz, NFCA president and co-founder. "One of the most important attributes on being an advocate for your loved one is the willingness and the ability to speak up and keep your eye on the ultimate goal, protecting not only the health and safety of your loved ones but for yourself as well."
NFC Month is organized each year by the National Family Caregivers Association for family caregivers reaching across the boundaries of diagnoses, age, and relationship to address the common needs and concerns of all family caregivers. NFC Month is designated as a time every year to thank, support, educate and celebrate family caregivers. For more information on National Family Caregivers Month and family caregiving call 800-896-3650 or visit www.thefamilycaregiver.org.
November is National Family Caregivers Month. It is designated as a time to thank, support, educate and celebrate more than 50 million family caregivers across the country currently providing an estimated $306 billion in "free" caregiving services. This year the focus is on family caregivers speaking up for their rights. This is an opportunity to advocate for stronger public policy addressing family caregiving issues and raise awareness about community programs supporting family caregivers.
Top 10 Ways to Celebrate National Family Caregivers Month
1. Offer a few hours of respite time to a family caregiver so they spend time with friends, or simply relax.
2. Send a card of appreciation or a bouquet of flowers to brighten up a family caregiver’s day.
3. Encourage local businesses offer a free service for family caregivers through the month of November.
4. Help a family caregiver decorate their home for the holidays or offer to address envelopes for their holiday cards.
5. Offer comic relief! Purchase tickets to a local comedy club, give a family caregiver your favorite funny movie to view, or provide them with a book on tape.
6. Find 12 different family photos and have a copy center create a 2006 calendar that the family caregiver can use to keep track of appointments and events.
7. Offer to prepare Thanksgiving dinner for a caregiving family in your community, so they can just relax and enjoy the holiday.
8. Take a few minutes to write a letter encouraging your mayor, county executive, or governor to issue a local proclamation establishing November as National Family Caregivers Month. Contact information for government officials can be found at www.firstgov.gov.
9. Become a part of the National Family Caregiver Story Project found at www.thefamilycaregiver.org and encourage the family caregivers you know to share their stories.
10. The National Family Caregivers Association’s Family Caregiving Community is designed by family caregivers for family caregivers and provides opportunities for you to access the latest resources, connect with others, and find support. Registration is FREE available at www.thefamilycaregiver.org.
Marshfield Hills, Massachusetts’ Marylyn Howe Appointed by President Bush to National Council on Disability
Marylyn Howe, a resident of Marshfield Hills, Massachusetts, was appointed by President George W. Bush to serve as a member of the National Council on Disability (NCD). The U.S. Senate confirmed Ms. Howe’s nomination on June 22, 2007.
Ms. Howe currently is the director of public policy at the Massachusetts Developmental Disabilities Council. She formerly was the executive director of the Massachusetts Assistive Technology Partnership at Children's Hospital in Boston, where she advocated strongly for people with disabilities to become empowered and independent through technology. She is a former Board Member of the National Association of Assistive Technology Act Programs and a former President and co-founder of the Association of Late-Deafened Adults.
NCD is an independent federal agency and is composed of 15 members appointed by the President, by and with the advice and consent of the Senate. It provides advice to the President, Congress, and executive branch agencies to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.
For more information, please contact NCD’s director of communications Mark S. Quigley at mquigley@ncd.gov or by telephone at 202-272-2004 (V), 202-272-2074 (TTY).
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The 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.
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