ࡱ> '(   D0mailto:nysarc@nysarc.org>*mailto:amking@voa.org@,pmorrissey@acf.hhs.gov/ 0DArialngsRoD| )0Y 0"DTimes New Roman| )0Y 0 DWingdingsRoman| )0Y 0 a .  @n?" dd@  @@`` `X\     ,,HH 0AA@8  ʚ;ʚ;g4EdEd )0ppp@ <4dddd 0D <4!d!dy 0Dv0___PPT10 6___PPT9{x10?  %3!=Federal Initiatives Supporting Older Adults with Disabilities>>0AAMR & RRTC on Aging and Developmental Disabilities at the University of Illinois, Chicago Special Forum on Aging Supports & End of Life Issues Washington, D.C. December 2, 2005 P5A New Frontier: Aging and Developmental Disabilities66(Medical science has extended life Aging and developmental disabilities is a relatively recent phenomenon If we embrace the concept of self-determination for people with developmental disabilities We must embrace it for life, for each individual New ChallengesPeople with developmental disabilities are living and living longer -- How do we explain aging to them? How do we help them accept not doing things or doing them differently? How do we explain the importance of living a healthy life? How do we prepare them for death and dying?GAnswersExpose them to inter-generational environments and have conversations about them Offer new and different ways of doing things and ask them what they think Be a model of healthy living and share with people with developmental disabilities Find opportunities to promote spirituality ImplicationsCannot wait till someone is over 65 or sick to address these questions We need to prepare ourselves as well as assist people with developmental disabilities It is never to late to start, even if we get a late start There are things we can do right nowGetting Our Act TogetherHow to prepare for these events, how to respond to them, and how to recover from them are not easy for anyone. First, we have to acknowledge that these events are unavoidable Second, we need to accept that these events should not occur in isolation or without preparation Third, if we believe in the concept of self-determination for people with intellectual disabilities, we cannot deny their right to exercise self-determination during end-of-life situations Fourth, there are resources and expertise available to help individuals with intellectual disabilities and others deal with death and the process of dying Fifth, we must make a commitment to disseminate this information through many venues, including Self Advocates Becoming Empowered.$pP|P Valuable ResourcesA In 2000 NYSARC, Inc. published a monograph End of Life Care, a Guide for Supporting Older People with Intellectual Disabilities and Their Families, written by Ann Botsford and Lawrence Force and a Resource Supplement The Volunteers of America, Inc., Last Passages Program developed a Trainer's Guide: End-Of-Life Care, Supporting Older People with Intellectual Disabilities and Their Families by Lawrence Force, Geraldine Abbatiello, Ken Doka, and Lawrence Faulkner These several products may be obtained from NYSARC, Inc. The e-mail for NYSARC, Inc. is nysarc@nysarc.orgPPPDP PPkP,g3Dmj r 00A $ADD s ContributionBetween September of 2001 and September of 2004 the Administration on Developmental Disabilities funded Volunteers of America, Inc. to undertake a variety of activities related to these products. Volunteers of America, Inc.: Documented current end-of-life care programs and practices in each State Identified agencies, organizations, and people in each State interested in the issue Formed a National Council of experts, advocates, and families Through the National Council, disseminated NYSARC, Inc. products Replicated, and as appropriate adapted, the New York model in Oklahoma Provided training and opportunities for networking through a national conference Angela King oversaw this grant for Volunteers of America, Inc. Her contact information is: amking@voa.org, (817) 860-1559 2PP}P 0 Suggested Next StepsObtain a copy of the monograph, supplement, and training guide from NYSARC, Inc. Work with relevant partners in your state to have a state specific conference on this issue Contact Volunteers on America, Inc. to obtain the end-of-life care programs and practices for your state  Future Federal Efforts>Provide AOA s AAAs and Aging and Disability Resource Centers with the monograph, supplement, and training guide Provide ADD  s grantee with these materials, including the Family Support 360 grantees that provide one-stop services to families with a member with a developmental disability  Something to Do TomorrownIn the NYSARC monograph there is a list of the rights of the dying taken from a book by David Kessler, Rights of the Dying We should all take this list to heart, get permission to copy it, laminate it, and share it with others It is more than a list of rights It represents the standards by which we should treat others experiencing death and the process of dying*of The Right& &To be treated as a living human being To maintain a sense of hopefulness, however changing its focus may be To be cared for by those who can maintain a sense of hopefulness, however changing this may be To express feeling and emotions about death in one's own way To participate in all decisions concerning one's care To be cared for by compassionate, sensitive, knowledgeable people who will attempt to understand one s needs To expect continuing medical care, even though the goals may change from  cure" goals to "comfort" goalsZ The Right& bTo have all questions answered honestly and fully To seek spirituality To be free of physical pain To express feeling and emotions about pain in one's own way Of children to participate in death To understand the process of death To die To die in peace and dignity Not to die alone To expect that the sanctity of the body will be respected after deathcZc Contact InformationPatricia A. 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