Briefs and Reports
New!
RRTCADD Disability Research Brief: Health of Aging Family Caregivers in Illinois (2009). Yamaki, K., Hsieh, K., & Heller, T
This brief compares the rates of obesity between adults with and without I/DD from 1985 to 2000. It is based on an analysis of the National Health Interview Surveys.
ITEM NO: 300.048
COST PER UNIT: $3.00.
Can be downloaded at no charge
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Sibling Leadership Network Update. (2007), Kramer, J., & Heller, T.
Highlights of the RRTCADD's first Sibling Leadership Conference for siblings of people with disabilities held on November 9-10, 2007 at Washington, D.C. The conference featured over 80 brothers and sisters of individuals with intellectual disabilities.
ITEM NO: 300.041
COST PER UNIT: $3.25
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Involvement of Adult Siblings of People with Developmental Disabilities in Future Planning. (2006). Kramer, J. & Heller, T. Disability Research Brief: Institute on Disability and Human Development.
Little is known about the role adult siblings play in planning for the future care of their sibling with a developmental disability. This research brief presents the results of a sibling survey to find out the extent siblings are involved in future planning and designated as the future caregiver, the resources they need to assume these responsibilities, and their concerns for the future.
ITEM NO: 330.005
COST PER UNIT: $3.00
Can be downloaded at no charge
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Future planning resource guide for families and adults with developmental disabilities in Illinois, (2006 rev.). Caldwell, J., Lopez, E., DeBrine, E., Factor, A., Heller, T., & Ennis, D.
This updated guide helps families navigate the maze of adult services and supports for individuals with developmental disabilities. It responds to families' need for a centralized source of information that describes adult services and how to access them. Content includes an overview of the service system and information on legal and financial planning, vocational and residential services, community supports, recreation and leisure opportunities, transportation, and advocacy. Information is in a user-friendly, question-and-answer format that was recommended by families. The guide is a template that other communities can follow in providing information on local services. Also available in Spanish!
ITEM NO: 100.019
COST PER UNIT: $15.00
Can be downloaded at no charge
SPANISH VERSION ITEM NO: 100.S19
COST PER UNIT: $15.00
Can be downloaded at no charge
----------------------------------------------------------------
Sibling Connections Fall 2005 Newsletter, (2005). Kramer, J. & Heller, T. RRTC on Aging with Developmental Disabilities.
Highlights of the RRTCADD’s first conference for siblings of people with disabilities held on October 29-30, 2004. The conference featured nationally known experts on the lifelong relationships of people with disabilities and their siblings and also provided siblings the chance to hear local experts in the field of disability and the opportunity to network with each other.
ITEM NO: 330.004
COST PER UNIT: $3.25
Can be downloaded at no charge
----------------------------------------------------------------
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.
ITEM NO: 300.011
COST PER UNIT: No charge.
Can be downloaded at no charge here (RRTCADD) or The Arc website: www.thearc.org
To order bound copies contact Jill Fosse at The Arc:
fosse@thearc.org, (301) 565-5476
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Las experiencias compartidas de familias Latinas de adolescentes y adultos con autismo / Shared experiences of Latino families of adolescents and adults with autism (Adolescentes y adultos con autismo un estudio de cuidado familiar proyecto Latino). (2003), Magana, S., Seltzer, M.M. & Krauss, M.W.
This bilingual report presents the challenges and rewards of caregiving expressed by Latino families who were part of a national study of families caring for adolescent and adult sons or daughters with autism. Families share their thoughts about their children living at home and away from home, their perspectives on caregiving, how their lives have changed, and what they have learned from this experience.
ITEM NO: 300.028
COST PER UNIT: $5.00
Can be downloaded at no charge
----------------------------------------------------------------
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.
ITEM NO: 530.004
COST PER UNIT: $5.00
Can be downloaded at no charge
----------------------------------------------------------------
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.
ITEM NO: 530.003
COST PER UNIT: $5.00
Can be downloaded at no charge
----------------------------------------------------------------
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.
ITEM NO: 530.002
COST PER UNIT: $5.00
Can be downloaded at no charge
----------------------------------------------------------------
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.
ITEM NO: 530.001
COST PER UNIT: $5.00
Can be downloaded at no charge
----------------------------------------------------------------
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.
ITEM NO: 310.012
COST PER UNIT: $7.00
Can be downloaded at no charge
----------------------------------------------------------------
Pooled trust programs for people with disabilities: A guide for families, (2001), by The Arc of the United States.
Pooled trusts enable families to pool their resources into a "master" special needs trust to protect their relatives' government benefits while increasing the total funds available for investment and reducing families' share of administrative costs. This publication's question-and-answer format provides a clear understanding of pooled trust programs and serves as a guide to help families and professionals evaluate this future planning option. It contains a directory of known pooled trust programs in the United States for people with disabilities and provides an overview of using various trusts as a financial planning tool.
ITEM NO: 300.005
COST PER UNIT: $7.00 for a bound copy
Can be downloaded at no charge
----------------------------------------------------------------
Aging family caregivers: Needs and policy concerns, (2000). Heller, T. Family Support Policy Brief #3. National Center for Family Support.
This policy brief discusses the needs of aging caregivers, including planning for the future of their relative with a developmental disability. It addresses cultural differences in family caregiving and trends in family support policies.
ITEM NO: 310.013
COST PER UNIT: $3.00
----------------------------------------------------------------
RRTCADD Disability Research Brief: Health of Aging Family Caregivers in Illinois (2009). Yamaki, K., Hsieh, K., & Heller, T
This brief compares the rates of obesity between adults with and without I/DD from 1985 to 2000. It is based on an analysis of the National Health Interview Surveys.
ITEM NO: 300.048
COST PER UNIT: $3.00.
Can be downloaded at no charge
----------------------------------------------------------------
Sibling Leadership Network Update. (2007), Kramer, J., & Heller, T.
Highlights of the RRTCADD's first Sibling Leadership Conference for siblings of people with disabilities held on November 9-10, 2007 at Washington, D.C. The conference featured over 80 brothers and sisters of individuals with intellectual disabilities.
ITEM NO: 300.041
COST PER UNIT: $3.25
----------------------------------------------------------------
Involvement of Adult Siblings of People with Developmental Disabilities in Future Planning. (2006). Kramer, J. & Heller, T. Disability Research Brief: Institute on Disability and Human Development.
Little is known about the role adult siblings play in planning for the future care of their sibling with a developmental disability. This research brief presents the results of a sibling survey to find out the extent siblings are involved in future planning and designated as the future caregiver, the resources they need to assume these responsibilities, and their concerns for the future.
ITEM NO: 330.005
COST PER UNIT: $3.00
Can be downloaded at no charge
----------------------------------------------------------------
Future planning resource guide for families and adults with developmental disabilities in Illinois, (2006 rev.). Caldwell, J., Lopez, E., DeBrine, E., Factor, A., Heller, T., & Ennis, D.
This updated guide helps families navigate the maze of adult services and supports for individuals with developmental disabilities. It responds to families' need for a centralized source of information that describes adult services and how to access them. Content includes an overview of the service system and information on legal and financial planning, vocational and residential services, community supports, recreation and leisure opportunities, transportation, and advocacy. Information is in a user-friendly, question-and-answer format that was recommended by families. The guide is a template that other communities can follow in providing information on local services. Also available in Spanish!
ITEM NO: 100.019
COST PER UNIT: $15.00
Can be downloaded at no charge
SPANISH VERSION ITEM NO: 100.S19
COST PER UNIT: $15.00
Can be downloaded at no charge
----------------------------------------------------------------
Sibling Connections Fall 2005 Newsletter, (2005). Kramer, J. & Heller, T. RRTC on Aging with Developmental Disabilities.
Highlights of the RRTCADD’s first conference for siblings of people with disabilities held on October 29-30, 2004. The conference featured nationally known experts on the lifelong relationships of people with disabilities and their siblings and also provided siblings the chance to hear local experts in the field of disability and the opportunity to network with each other.
ITEM NO: 330.004
COST PER UNIT: $3.25
Can be downloaded at no charge
----------------------------------------------------------------
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.
ITEM NO: 300.011
COST PER UNIT: No charge.
Can be downloaded at no charge here (RRTCADD) or The Arc website: www.thearc.org
To order bound copies contact Jill Fosse at The Arc:
fosse@thearc.org, (301) 565-5476
----------------------------------------------------------------
Las experiencias compartidas de familias Latinas de adolescentes y adultos con autismo / Shared experiences of Latino families of adolescents and adults with autism (Adolescentes y adultos con autismo un estudio de cuidado familiar proyecto Latino). (2003), Magana, S., Seltzer, M.M. & Krauss, M.W.
This bilingual report presents the challenges and rewards of caregiving expressed by Latino families who were part of a national study of families caring for adolescent and adult sons or daughters with autism. Families share their thoughts about their children living at home and away from home, their perspectives on caregiving, how their lives have changed, and what they have learned from this experience.
ITEM NO: 300.028
COST PER UNIT: $5.00
Can be downloaded at no charge
----------------------------------------------------------------
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.
ITEM NO: 530.004
COST PER UNIT: $5.00
Can be downloaded at no charge
----------------------------------------------------------------
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.
ITEM NO: 530.003
COST PER UNIT: $5.00
Can be downloaded at no charge
----------------------------------------------------------------
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.
ITEM NO: 530.002
COST PER UNIT: $5.00
Can be downloaded at no charge
----------------------------------------------------------------
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.
ITEM NO: 530.001
COST PER UNIT: $5.00
Can be downloaded at no charge
----------------------------------------------------------------
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.
ITEM NO: 310.012
COST PER UNIT: $7.00
Can be downloaded at no charge
----------------------------------------------------------------
Pooled trust programs for people with disabilities: A guide for families, (2001), by The Arc of the United States.
Pooled trusts enable families to pool their resources into a "master" special needs trust to protect their relatives' government benefits while increasing the total funds available for investment and reducing families' share of administrative costs. This publication's question-and-answer format provides a clear understanding of pooled trust programs and serves as a guide to help families and professionals evaluate this future planning option. It contains a directory of known pooled trust programs in the United States for people with disabilities and provides an overview of using various trusts as a financial planning tool.
ITEM NO: 300.005
COST PER UNIT: $7.00 for a bound copy
Can be downloaded at no charge
----------------------------------------------------------------
Aging family caregivers: Needs and policy concerns, (2000). Heller, T. Family Support Policy Brief #3. National Center for Family Support.
This policy brief discusses the needs of aging caregivers, including planning for the future of their relative with a developmental disability. It addresses cultural differences in family caregiving and trends in family support policies.
ITEM NO: 310.013
COST PER UNIT: $3.00
----------------------------------------------------------------
