National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities
Setting a National Agenda for Family Research, Practice, and Policy
In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.
View Families Issue Brief, AAIDD Inclusion Journal Article, and Video
Caregiving and Family Support Interventions: Crossing Networks of Aging and Developmental Disabilities
This scoping review addressed the following questions: (a) What types of caregiver interventions are being done in both aging and developmental disability research? (b) How are these interventions similar and different? (c) What kinds of outcomes do these interventions have? (d) What innovative approaches are these interventions using? and (e) What can each field (developmental disabilities and gerontology) learn from the other based on this review? The disability review spanned 20 years (1992–2012), resulting in 14 studies; the aging review spanned 5 years (2008– 2012), resulting in 55 studies. Data from the final selected studies were then extracted and compared on research design, type of intervention (governmental programs, small-group psychosocial, and other), and outcomes. Generally, in both fields, family-support interventions benefited participants’ well-being and improved service access and satisfaction. Increased partnership between the fields of aging and developmental disabilities is critical to future scholarship in caregiving for both populations.Read More...
Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices. Intellectual and Developmental Disabilities
Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices. Intellectual and Developmental Disabilities, February 2015, Vol. 53, No. 1, pp. 2-29. doi: http://dx.doi.org/10.1352/1934-9556-53.1.2
Improving health behaviours of Latina mothers of youths and adults with intellectual and developmental disabilities
Health outcomes of mid-life and aging Latina and Black American mothers of children with developmental disabilities
Health behaviors, service utilization and access to care among older mothers of color who have children with developmental disabilities
Older adults of color with developmental disabilities and serious mental illness: Experiences and service patterns
Self-directed Support: Impact of Hiring Practices on Adults with Intellectual and Developmental Disabilities and Families
http://www.aaiddjournals.org/doi/abs/10.1352/1944-7558-117.6.464 Read More...
The Future is Now: A Future Planning Training Curriculum for Families and Their Adult Relatives with Developmental Disabilities
This curriculum equips families and their adult relative with a disability with the communication skills and information to jointly plan for the future. Read More...
Latina mothers caring for a son or daughter with autism or schizophrenia: Similarities, differences and the relationship between co-residency and maternal well-being
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2903044/ Read More...
Siblings of Adults with Developmental Disabilities: Psychosocial Outcomes, Relationships, and Future Planning
A Rich Mosaic: Emerging research on Asian families of persons with intellectual and developmental disabilities
http://www.sciencedirect.com/science/article/pii/S0074775009370068 Read More...
Family Support Interventions for Families of Adults with Intellectual and Developmental Disabilities
Though families are considered the primary provider of support to people with intellectual and developmental disabilities (I/DD), only a small amount of I/DD funding in the United States goes toward offering assistance to these families. In addition, formal interventions typically target families of children with I/DD, which are no longer available when the individual enters adulthood. This chapter reviews the literature on family support interventions for families caring for adults with I/DD. It first examines the impact of lifelong caregiving and the support needs of these families. It then draws attention to various interventions currently available for these families.
To order the hardcover book ($198.00 US), contact Elsevier at http://www.elsevier.com/.
Health Profile of Aging Family Caregivers Supporting Adults With Intellectual and Developmental Disabilities
Health and Access to Health Care of Female Family Caregivers of Adults with Developmental Disabilities
Health Behaviors, Service Utilization, and Access to Care Among Older Mothers of Color Who Have Children with Developmental Disabilities
http://aaiddjournals.org/doi/pdf/10.1352/1934-9556(2008)46%5B267%3AHBSUAA%5D2.0.CO%3B2 Read More...
Family Support and Intergenerational Caregiving: Report of the State of the Science in Aging with Developmental Disabilities Conference
Adolescents and Adults With Autism With and Without Co-morbid Psychiatric Disorders: Differences in Maternal Well-Being
Psychological distress among Latino family caregivers of adults with schizophrenia: The roles of burden and stigma in the stress-process model
http://ps.psychiatryonline.org/data/Journals/PSS/3797/07ps378.pdf Read More...
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. Read More...
Longitudinal Outcomes of a Consumer-Directed Program Supporting Adults with Developmental Disabilities and Their Families
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.
http://www.aaiddjournals.org/doi/pdf/10.1352/0895-8017%282006%29111%5B250%3AHCOAWM%5D2.0.CO%3B2 Read More...
Psychological distress and well-being of Latina and non-Latina white mothers of youth and adults with an autism spectrum disorder: Cultural attitudes towards co-residence status
http://onlinelibrary.wiley.com/doi/10.1037/0002-94184.108.40.2066/abstract Read More...
Health Outcomes of Midlife and Older Latina and Black American Mothers of Children With Developmental Disabilities
Bidirectional Effects of Expressed Emotion and Behavior Problems and Symptoms in Adolescents and Adults With Autism
Depressive Symptoms in Adults with Mild to Moderate Intellectual Disability and Their Relation to Maternal Well Being
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!
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.
Adults With Autism Living at Home or in Non-Family Settings: Positive and Negative Aspects of Residential Status
Brief Research Report: Impact of a Consumer-Directed Family Support Program on Reduced Out-of-Home Institutional Placement
African American families who care for adults with developmental disabilities or mental illness: A call for research
http://www.rcgd.isr.umich.edu/prba/perspectives/springsummer2004/magnana.pdf Read More...
http://ps.psychiatryonline.org/article.aspx?articleid=88730 Read More...
Controlled Evaluation of Support Groups for Grandparent Caregivers of Children with Developmental Disabilities and Delays
Cultural Context of Caregiving: Differences in Depression Between Puerto Rican and Non-Latina White Mothers of Adults With Mental Retardation
Management of respite and personal assistance services in a consumer-directed family support programme
Las experiencias compartidas de familias Latinas de adolescentes y adultos con autismo / Shared experiences of Latino families of adolescents and adults with autism
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.
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
Well-being and family role strain among Cuban American and Puerto Rican mothers of adults with mental retardation
http://www.tandfonline.com/doi/abs/10.1300/J137v05n03_03#preview Read More...
African-American grandmother carers of children with disabilities: Predictors of depressive symptoms
Service utilization patterns of adults with intellectual disabilities: A Comparison of Puerto Rican and Non-Latino White Families
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
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
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
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.
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.
Change in social support and psychological well-being: A longitudinal study of aging mothers of adults with mental retardation
Continuity or discontinuity of family involvement following residential transitions of adults with mental retardation
Grandparent Caregivers I: Characteristics of the grandparents and the children with disabilities for whom they care
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.
http://www.aaiddjournals.org/doi/pdf/10.1352/0895-8017%281999%29104%3C0466%3APRFCFA%3E2.0.CO%3B2 Read More...
Dr. Heller examines later-life caregiving for adults with intellectual disabilities from a life-course perspective that takes into account the social trends and service patters that affect these families. It discusses demographic trends, cultural differences, interventions to support later-life transitions including planning for the future, and a future research agenda.
COST PER UNIT: $131.00
Order directly from the publisher at www.elsevier.com or (800) 545-2522
COST PER UNIT: $19.95
Order directly from the American Association on Mental Retardation at www.aamr.org or 1-301-604-1340