Family Handbook on Future Planning (2003). Davis, Sharon, (Ed.). Produced by The Arc of the United States and the RRTC on Aging with Developmental Disabilities.
This guide helps families take the initial steps to address the future personal, legal, and financial needs of their sons or daughters with intellectual and developmental disabilities. It teaches families how to review and inventory their relative’s needs and strengths, determine what the plan should include, and locate qualified professionals and resources to finalize the plan. It is an update of The Arc’s 1991 handbook on future planning and the 1989 publication How to Provide for Their Future.
Also available at The Arc website: www.thearc.org
To order bound copies contact Jill Fosse at The Arc:
firstname.lastname@example.org, (301) 565-5476
Coordinating systems serving carers of children and adults with developmental disabilities (2002). Janicki, M.
Aging adults with intellectual and developmental disabilities face many of the same challenges as other aging adults. Physical aging, social isolation, disengagement from work or activities and challenges of retirement are issues that must be faced by aging adults with cognitive disabilities in addition to the possibility of needing additional assistance from carers to determine their future. This report gives an overview of common definitions, care and support issues, and how systems can partner in the delivery of community support networks. Reproduced with permission of the U.S. Administration on Aging and The Lewin Group.
Promoting healthy aging, family support, and age-friendly communities for persons with developmental disabilities: Report of the 2001 Invitational Research Symposium on Aging with Developmental Disabilities (2002). Heller, T., Janicki, M, P., Hammel, J., & Factor, A.R.
This report summarizes the research to date and presents recommendations for future research, progressive policies, and innovative intervention to promote healthy aging, support aging adults and their families, and create age-friendly communities. These recommendations coalesce the thinking of the 100 plus international researchers, service providers, families and persons with disabilities who participated in the conference.
Grandparents raising grandchildren with developmental disabilities (2002). Heller, T., & Ganguly, R.
This paper examines the demographics of grandparent caregivers of children and adults with developmental disabilities, their reasons for assuming this role, their needs, concerns and challenges. Additionally it reviews supportive interventions for this population and implications for the aging network in designing and coordinating services as part of the National Family Caregiver Support Program. Reproduced with permission of the U.S. Administration on Aging and The Lewin Group.
Adolescents and Adults With Autism, Report #1: A Book of Quotes: Shared Experiences of Families of Adolescents and Adults with Autism (2002). Seltzer, M.M., Krauss, M.W., Greenberg, J.S., Leavitt, L., Magana, S. & Orsmond, G.I.
This report is based on interviews with more than 400 parents caring for a son or daughter with autism. This is the largest federally funded study of these families conducted to date. The thoughts and feelings these parents share express the extraordinary wisdom, energy, struggle, and triumphs associated with this caregiving experience.
Adolescents and Adults with Autism, Report #2: A Profile of Adolescents and Adults With Autism Spectrum Disorders (2002). Seltzer, M.M., Krauss, M.W., Greenberg, J.S., Leavitt, L., Magana, S. & Orsmond, G.I.
This report presents the objectives, methodology, and initial findings of the first large-scale research study of 405 adolescents and adults with autism and spectrum disorders (ASD) and their families. It contains data on diagnosis, symptoms and behaviors, services and treatments, and participation in social and recreation activities. The authors compare these data to the research findings to date.
Adolescents and Adults with Autism: Reflections From Adult Siblings Who Have a Brother or Sister With Autism Spectrum Disorder, Report #3 (2002). Krauss, M.W., Seltzer, M.M., Greenberg, R., Orsmond, G.I. & Magana, S.
This report presents siblings’ perspectives on having a brother or sister with autism. It is based on a study of caregiving that included more than 400 families. Quotes from more than 200 adult siblings provide insight into their experiences over the life course. Topics include sibling relationships, community acceptance, positive and negative experiences of having a sibling with a disability, future expectations, and advice to parents and to teenage siblings.
Adolescents and Adults With Autism: Recommended Resources From Families, Report #4 (2002), Krauss, M.W., Seltzer, M.M., Greenberg, R., Orsmond, G.I. & Magana, S.
This report contains the books, videos, and internet web sites that helped families learn more about their son or daughter’s autism spectrum disorder. Families recommended these resources in a study of more than 400 parents caring for a child with autism spectrum disorder.
Aging With Mental Retardation: Oral Health for Older Individuals With Disabilities (2001). Farsai, P. & Calabrese, J.
This brief discusses oral health care for older people with disabilities. It explains the conditions leading to oral health problems for people with disabilities and specifies what to look for in dental treatment and in choosing a dentist. The fact sheet also discusses barriers to accessing proper oral health care and provides recommendations for maintaining proper oral hygiene as people with disabilities age.
Can be downloaded at no charge.
Healthy aging: Adults with intellectual disabilities: Women’s health and related issues (2000). Walsh, P. N., Heller, T., Schupf, N. & van Schrojenstein Lantman-de-Valk, H. Geneva, Switzerland: International Association for the Scientific Study of Intellectual Disabilities and the World Health Organization.