Life planning and establishing guardianship for those with developmental disabilities can be complicated, and the terms of such decisions may have far-reaching effects. To assist families with these concerns, The Kennedy-Willis Center on Down Syndrome at Pathfinder Village hosted a workshop presented by the New York State Commission on Quality Care and Advocacy for Persons with Disabilities last Friday, March 26.
"Guardianship and Healthcare Issues for People with Special Needs" featured legal experts from the state Office of Mental Retardation and Developmental Disabilities (OMRDD), NYSARC, and the state Commission on Quality Care and Advocacy for Persons with Disabilities. The workshop offered participants information to establish advance directives, such as guardianship, living wills, health care proxies, and powers of attorney. An emphasis was placed on the rights of individuals, and how guardianship and end-of-life decisions can best be implemented under current statutes in New York state.
Featured presenters included Patricia W. Johnson, Esq., the assistant counsel for the state’s Commission on Quality of Care; Paul R. Kietzman, Esq., general counsel for the NYSARC, the state’s largest private service provider for people with developmental disabilities; and William Combes, A.C.S.W., the state director of the programs for Protection and Advocacy for Persons with Developmental Disabilties/Traumatic Brain Injury through the Quality of Care Commission.
Featured presenters included Patricia W. Johnson, Esq., the assistant counsel for the state’s Commission on Quality of Care; Paul R. Kietzman, Esq., general counsel for the NYSARC, the state’s largest private service provider for people with developmental disabilities; and William Combes, A.C.S.W., the state director of the programs for Protection and Advocacy for Persons with Developmental Disabilties/Traumatic Brain Injury through the Quality of Care Commission.
“Discussions about guardianship, healthcare, and end-of-life issues regarding loved ones who have developmental disabilities are complicated, but advance planning is the best way a family may make these decisions objectively. It is important that families seek guidance from qualified professionals while going through this process,” said Carl Koenig, interim director of the Kennedy¨Willis Center on Down Syndrome.
“The establishment of these plans takes time,” continued Mr. Koenig. “Once guardianship and a life plan are established it is important that these instructions be kept up-to-date to reflect the current status of the individual and his family.”
The Kennedy-Willis Center on Down Syndrome opened in 1996, and provides counseling and training for direct care staff, medical professionals, and families who care for loved ones who have Down syndrome and other disabilities. The Center has sponsored over 30 conferences on a variety of topics pertaining to Down syndrome, including behavioral patterns, sexuality, life planning, aging, and inherent medical conditions.
Founded in 1980, Pathfinder Village is a remarkable residential community for children and adults who have Down syndrome and other developmental disabilities. Additionally, it offers a day school program for students living in the area's school districts. Pathfinder Village is licensed by the State of New York and its programs are regulated by the State Department of Education, Department of Health, and OMRDD. It is located on State Route 80, two miles east of Edmeston and 15 miles west of Cooperstown. More information is available at its website, www.pathfindervillage.org, and Pathfinder Village now has a fan page on the popular social network site, Facebook.
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