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Family Support and Respite
Contains products that offer family caregivers assistance in supporting a family with disabilities and thereby helping families stay together.
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Managed by: John Agosta of National Center for Family Support at the Human Services Research Institute
Co-managed by Janae Zolna
Product Categories
Books, Publications & Reports (printed and/or online) (39 Products)
Electronic Media (34 Products)
Organizations, Programs, and Projects (24 Products)
Online Forums (1 Products)
Other (7 Products)
People Who Can Help (2 Products)
Books, Publications & Reports (printed and/or online)
 | 2010 FAST Family Support Survey: National Results
This survey asked parents of transition-aged youth about three things. These were: 1) What information did they need?; 2) What was the quality of information they had?, and; 3) What was the quality of support they were receiving? | | A "Stranger" Among Us
A comprehensive guide to all aspects of hiring one-to-one support for children and young adults with disabilities. Uses examples, checklists, and sample questions in a reader-friendly format. “Stranger” covers a complex topic with sensitivity. | | A Parenting Guide for Families of Children with Disabilities: Developing Social Skills Towards Independent Living
This book helps families decide how to raise their child with a disability. It is easy to follow | | Achieving Best Behavior for Children with Developmental Disabilities
A workbook made for the parents of children with disabilities. The book has many ideas to help kids control their behavior. | | An Introduction to Pediatric Palliative Care
This article talks about end of life care for children with disabilities. | | Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns - Revised and Expanded Ed
This book explains the "whys" and "hows" behind unusual or challenging behavior in persons who have Asperger syndrome. | | Autism & Alleluias
A book written by the mother of young adult with Autism. She uses the stories gathered over many years to explain what her life has been like. The author also explains how Christianity helped her. | | Autism 24/7
This book tells what it is like to be the parent of a child with autism. It shows that this role needs attention 24 hours-a-day, seven days a week. | | Autism and Asperger's Digest Magazine
This magazine has articles about the lives of people who have Autism or Asperger's Syndrome. It has many resources. | | Becoming a Resilient Family: Child Disability and the Family System
This article gives ideas to help families grow closer and stronger when they find out their child has a disability. | | Benefits For Children With Disabilities
This booklet tells how children and youth can make use of SSI and SSDI benefits. It is written to parents and updated every year. You can download a copy for free as a PDF file. | | Building a Joyful Life with your Child who has Special Needs
A book for parents about staying healthy and strong while raising a child who has special needs. | | Circles of Support and Mutual Caring
This booklet is for people who know older families, and particularly those where a person with a disability and their older relative are giving essential support to each other. This is often known as ‘mutual caring’. | | Contemporary Issues in Intellectual Disabilities
This academic book is about many topics affecting people with intellectual disabilities. | | Dr. Thompson's Straight Talk on Autism
A book with advice about supporting children who have autism. | | Exceptional Parent Magazine
A monthly magazine devoted to parents and professionals involved in the care of individuals with developmental disabilities. | | Family Caregiver Handbook
A guide for family and other unpaid caregivers who care for an adult or senior with disabilities. | | Family Information Guide to Assistive Technology and Transition Planning
A guide for families that focuses on the role of assistive technology during transition times in a child's life. | | Family Quality of Life Survey
This is a survey that addresses family quality of life and helps families or family support personnel identifiy family strengths and priorities for support. | | Family Support Services in the United States: 2008 (Policy Research Brief)
This brief is about family support Services for people with ID/DD. | | How to Care for an Adult With Down Syndrome
This article is about caring for adults with Down Syndrome. | | How to Detect Developmental Delay and What to Do Next
This book helps new parents who suspect their baby has a disability. | | Impact: Feature Issue on Parenting Teens and Young Adults with Disabilities
This newsletter/magazine has articles about being the parent of a young adult who has disabilities. Some articles explain research and policy, some give ideas parents can use, and some tell the stories of people. | | Impact: Feature Issue on Supporting Success in School and Beyond for Students with Autism Spectrum Disorders
This issue of the Impact newsletter is about supporting students with Autism Spectrum Disorder. | | Inclusive Programming for High School Students with Autism or Asperger's Syndrome: Making Inclusion Work for Everyone!
This book is about making inclusion work for high school-aged students. It is written to school staff and parents. | | Life Landscapes: Parents talk about raising children with disabilities
This is the first in the Life Landscapes series; this installment features stories written by parents and photographs of families across a range of ages, cultures, geographic locations in the province of Saskatchwean, and disability. | | Made for Good Purpose What Every Parent Needs to Know to Help Their Adolescent with Asperger's, High Functioning Autism or a Learning Difference Become an Independent Adult
This book gives parents ideas about how to help their children become independent adults. | | Mike's Crush
This book has lessons for youth with Asperger's syndrome about relationships and boundaries. There is also a version for families. | | MN State Services for the Blind-Child Services
MN State Services for the Blind-Child Services provides information and support to families of Blind, Visually Impaired or DeafBlind children ages 0-14. | | National Caregiver Training Program
This training teaches people how to provide personal care. There are many units that have curriculum guides and DVDs.
| | Puberty Information for Parents
These are two page fact sheets that give parents of adolescents with disabilities information and advice about puberty. There are separate sheets for parents of boys and of girls. | | Sibling Study Report
Easter Seal's Sibling Survey report about the experiences of sibling caregivers. | | STARS: Specialized Training for Associates in Rural Settings
A basic staff training curriculum developed in Alaska for direct support professionals serving infants and young children, and their families. | | Still in the Shadows with Their Future Uncertain A Report on Family and Individual Needs for Disability Supports (FINDS), 2011
This report summarizes how people with disabilities are faring in the community. It covers schools, jobs, housing, and support for families. | | Supportive Care in the Congregation: Providing a congregational network of care for persons with significant disabilities
This small book outlines a vision for networks of support within faith communities. These networks help people with disabilities and their families. | | Survival Strategies for Parenting Children with Bipolar Disorder
A book describing the symptoms of, understanding the medication for, and accessing necessary support for children with bipolar disorder and related conditions. | | The Caring Kit
The Caring Kit is everything an organization needs to start a community-based respite care training program for parents who have children with disabilities ages birth to twenty-one. | | Transportation Access and Respite Care: Critical Information for Family Caregivers, Care Recipients, and Respite Providers
A fact sheet that helps identify transportation options related to receiving and providing respite care | | Work, Life, and the Mental Health System of Care A Guide for Professionals Supporting Families of Children with Emotional or Behavioral Disorders
This book helps parents keep balance in their lives when they a child with an emotional or behavioral disorder. |
Electronic Media (Videos, CDs, T.V., Radio, Websites, etc.)
| AbilityPath.org
A website that has a lot of information for supporting the healthy development of children with disabilities. | | Best Boy
Best Boy is an Academy Award winning video about Philly, a man with an intellectual disability who lived with his parents. The story documents his parents failing health, and Philly's entry into the adult services support system.
| | Complex Child E-Magazine
This is an online magazine with articles written by parents. It has articles on many medical topics, and there is a new issue every month. | | Coping With Disaster: Suggestions for Helping Children With Cognitive Disabilities
A web page about helping children with disabilities to understand and cope with disasters. | | Discover Camp!
A website for families preparing to select a summer camp for their child with disabilities. | | Dual Diagnosis: A Guide for Caregivers
This on-line guidebook explains the dual diagnosis of intellectual disability and mental illness. It is written at a very technical level. | | Families Fight To Care For Disabled Kids At Home
A news story from NPR. It is about people with disabilities losing the state funding they need for necessary care when they turn 21. | | Family Information Guide to Assistive Technology and Transition Planning
A guide for families that focuses on the role of assistive technology during transition times in a child's life. | | Family Support Services in the United States (Policy Research Brief)
This brief reports on how well state governments have provided family support services for persons with disabilities. | | Finding a Balance: Obesity and Overweight Among Special Needs Children
This report reviews why children with disabilities sometimes have trouble controlling their weight. There is also an easy to use toolkit for parents and families. | | Home and Community-Based 1915(c) Medicaid Waivers for Respite Support: State-by-State Tables of Medicaid Waiver Information
A report that provides information for individual states about how their Medicaid Home and Community Based Waiver services include respite. | | Impact: Feature Issue on Parenting Teens and Young Adults with Disabilities
This newsletter/magazine has articles about being the parent of a young adult who has disabilities. Some articles explain research and policy, some give ideas parents can use, and some tell the stories of people. | | Impact: Feature Issue on Supporting Success in School and Beyond for Students with Autism Spectrum Disorders
This issue of the Impact newsletter is about supporting students with Autism Spectrum Disorder. | | Intellectual Disability: Promoting Daily Living Skills in Adults
This sheet gives ideas on teaching life skills to people with disabilities. | | MN State Services for the Blind-Child Services
MN State Services for the Blind-Child Services provides information and support to families of Blind, Visually Impaired or DeafBlind children ages 0-14. | | My Tasting Journal: Keeping Track of the Foods I Try
This is an e-book. It is for DSPs and family members who want to help people try new foods. | | National Caregiver Training Program
This training teaches people how to provide personal care. There are many units that have curriculum guides and DVDs.
| | National Information Center for Children and Youth with Disabilities
NICHCY is the national information center that provides information on disabilities and disability-related issues with special focus on children and youth (birth to age 22).
| | NICHCY publications catalog and state sheets
NICHCY is the national clearinghouse of information for families who have a son or daughter with a disability and a clearinghouse for the many professionals who care for and about these individuals. | | Our-Kids Listserv
An essential e-mail list for families of children with disabilities | | Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder
This DVD shows what it is like to have trouble with "sensory integration." It talks mostly about children and also explains how parents, teachers and others can help. | | Parenting and Child Health website - South Australia Department of Child, Youth, and Women Health Service
This web site has information about the health and development of children. There are many pages about the needs of children with disabilities. | | PowerPoint presentations on assistive technology
These are four PowerPoint presentations about assistive technology and how it helps people with disabilities. | | Puberty Information for Parents
These are two page fact sheets that give parents of adolescents with disabilities information and advice about puberty. There are separate sheets for parents of boys and of girls. | | Real Look Autism
This website uses real life stories from families who have a child with Autism. It has videos that show parents and therapists working together to help a child. There are also articles about ways to help children with Autism. | | Representation Agreements-Supporting your relative in making sound decisions
This on-line course will explain Representation Agreements, a legal tool for people who want or need help with some decisions. It allows others to represent them in financial and health decisions. | | S.M.I.L.E. on Down Syndrome Parent Network
An organization in Indiana that provides information and support to the families of children who have Down syndrome. S.M.I.L.E. also serves small parts of Kentucky and Illinois. | | STARS: Specialized Training for Associates in Rural Settings
A basic staff training curriculum developed in Alaska for direct support professionals serving infants and young children, and their families. | | Still in the Shadows with Their Future Uncertain A Report on Family and Individual Needs for Disability Supports (FINDS), 2011
This report summarizes how people with disabilities are faring in the community. It covers schools, jobs, housing, and support for families. | | The Family Center on Technology and Disability (FCTD)
This website offers information and services on the subject of assistive technologies. | | TRN Online Presentations
These online presentations are for staff training. Each is one hour long. They may also be helpful to family members and people with disabilities. | | Vanderbilt Kennedy Center Tip Sheets and Resources
A set of one-page fact sheets about many topics related to disability. They are intended for individuals and families with and without disabilities, service providers, students and trainees. | | Vision Library for Enhancing Quality of Life CD-ROM
This CD-rom has many PowerPoint slides. They are about improving quality of life for people with disabilities. | | When Parents Can't Fix It: Living With a Child's Disability
This moving and and important film looks at the lives of five families who are raising children with disabilities- the problems they face, and the rewards and stresses of adapting to their child's condition. |
Organizations, Programs, and Projects
| Camp Friendship
Resident camp sessions offered summer and winter holiday. Day/weekend options also available. Designed for persons w/developmental, physical or multiple disabilities, special medical needs, Down Syndrome, autism, or other conditions. ACA accredited. | | Camp New Hope
Camp New Hope is operated by Friendship Ventures and offers traditional summer resident camp sessions for children and adults with disabilties. | | Community Guides
A program to assist families who have a member with disabilities to find supports in their community. | | Families United Network
This program offers peer support and information over the phone to parents, siblings, or other caregivers. It is free and volunteer-based. | | Family Quality of Life Survey
This is a survey that addresses family quality of life and helps families or family support personnel identifiy family strengths and priorities for support. | | Family Support Advisory Council
A Louisiana group that keeps a watchful eye on the delivery of community and family supports. | | Family Support Network
A source of information and training for families living in southeastern Massachusetts | | Family Voices
Clearinghouse for information concerning the health care of children with special health needs. | | Federated Human Service Cooperative
This group helps people with disabilities and their families set-up local provider organizations. They have a helpful website and an online newsletter. | | Friendship Ministries
Friendship Ministries provides information and new ideas for helping people with disablities learn about faith and become members of a church. | | Last Passages: Sharing Information and Promising Practices to Enhance End-of-Life Care for People with Developmental Disabilities
A project with mterial for caregivers to persons with developmental disabilities who are very ill, or near the end of life. | | Lucky Mindy Adventures
Escorted travel for individuals with disabilities. | | MN State Services for the Blind-Child Services
MN State Services for the Blind-Child Services provides information and support to families of Blind, Visually Impaired or DeafBlind children ages 0-14. | | Mothers From Hell 2 (MFH2)
MFH2 is a national group of parents, relatives, friends, and anyone who just plain 'gets it' fighting for individuals with disabilities.
| | National Center for Family Support
The National Center for Family Support is a good source of training and technical assistance on family support. GO TO THE WEB to access information and many resources about family support. | | National Information Center for Children and Youth with Disabilities
NICHCY is the national information center that provides information on disabilities and disability-related issues with special focus on children and youth (birth to age 22).
| | NICHCY publications catalog and state sheets
NICHCY is the national clearinghouse of information for families who have a son or daughter with a disability and a clearinghouse for the many professionals who care for and about these individuals. | | Parents are Experts: Parents Training Parents
A program providing training to parents so they can advocate for their children with disabilities. | | Partners in Policymaking
Partners is an innovative, competency based leadership training program for adults with developmental disabilities and parents of young children with disabilities. | | S.M.I.L.E. on Down Syndrome Parent Network
An organization in Indiana that provides information and support to the families of children who have Down syndrome. S.M.I.L.E. also serves small parts of Kentucky and Illinois. | | Search Beyond Adventures
Supervised vacation trips for people with disabilities. | | STARS: Specialized Training for Associates in Rural Settings
A basic staff training curriculum developed in Alaska for direct support professionals serving infants and young children, and their families. | | Trips, Inc., Special Adventures
Trips, Inc., provides travel opportunities to people of various abilities in a safe, respectful and fun atmosphere. All of our special adventures seek to create an environment that promotes personal and emotional growth, friendship and learning. | | Yachad, National Jewish Council for Disabilities
This program believes in full inclusion of Jewish people with disabilities in community life. It provides services to people of all ages. |
Online Forums
Other
| 2010 FAST Family Support Survey: National Results
This survey asked parents of transition-aged youth about three things. These were: 1) What information did they need?; 2) What was the quality of information they had?, and; 3) What was the quality of support they were receiving? | | Accessible Journeys
Since 1985, our only job has been designing custom, wheelchair accessible vacations and escorting groups on accessible holidays exclusively for slow walkers, wheelchair travelers, their families and their friends.
| | Adaptive Adventures
Adaptive Adventure mission is to increase awareness and participation in adaptive sports and recreation throughout the world. | | How to Care for an Adult With Down Syndrome
This article is about caring for adults with Down Syndrome. | | Kathie Snow
Kathie is the author of the book "Disability is Natural." She also has a son who was born with cerebral palsy. Kathie has a web site, an Email newsletter, and conducts workshops across the United States and Canada to share that disability is natural | | Search Beyond Adventures
Supervised vacation trips for people with disabilities. | | Trips, Inc., Special Adventures
Trips, Inc., provides travel opportunities to people of various abilities in a safe, respectful and fun atmosphere. All of our special adventures seek to create an environment that promotes personal and emotional growth, friendship and learning. |
People Who Can Help
| Cathy Ficker Terrill
Cathy is a porfessional,parent of a child with a dsiabiltiy and a person with a brain injury. She has done extensive work at the local, state, national and international arena in the areas of strategic planning, building social capitol, organizational... | | David Wetherow
Facilitation and training in PATH, person-centered planning, self-determination and community living.
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