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Family Support and Respite
  >>Located in Store(s): Family Place

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: Yoshi Kardell (ykardell@hsri.org) of Human Services Research Institute

Product Categories
Books, Publications & Reports (printed and/or online) (44 Products)
Electronic Media (27 Products)
Organizations, Programs, and Projects (20 Products)
Online Forums (1 Products)
Other (4 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 Client Called Noah
This book tells about Noah's transition from living with his family to living in a variety of institutional and group home settings during his teenage and young adult years. It shows how difficult it is for families to get support.
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
This workbook is made for the parents of children with disabilities. It has many ideas to help kids control their behavior.
Adolescents on the Autism Spectrum: A Parent's Guide to the Cognitive, Social, Physical, and Transition Needs of Teenagers with Autism Spectrum Disorders
This book talks about the developmental stages of a teenager with Asperger Syndrome.
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 offers parents many ideas about how to teach their sons and daughters new skills.
Autism and Asperger's Digest Magazine
This magazine has articles about the lives of people who have Autism or Asperger's Syndrome. Its target audiences are parents and professionals.
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 has ideas on creating natural support networks for families in which a person with IDD and their older relative are providing essential supports for 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.
Critical Issues in Intellectual and Developmental Disabilities: Contemporary Research, Practice, and Policy
This manual explores emerging issues in the fields of intellectual and developmental disabilities in ten areas.
Disability is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities (Third Edition)
This book offers advice and insight into living with a disability, and being the parent of a child with a disability. It is based on the paradigm that disability is natural, rather than somehow different from "normal."
Dr. Thompson's Straight Talk on Autism
This book has practical 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 Experiences with Long-term Supports and Services for Family Members
This data brief reviewed how families felt about the in-home supports they were receiving. The data showed that a family's cultural background made a difference in how satisfied they were with services.
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. You can download it as a PDF file.
Family Research Toolkit
This set of surveys addresses many aspects of family quality of life. Most are designed for use by researchers, but a few can be useful to families and counselors.
Family Support Services in the United States: 2008 (Policy Research Brief)
This brief is about family support Services for people with ID/DD. You can download it for free as a PDF file.
Family Support, Culture and Disability
This curriculum helps self-advocates and families think about the kind of support that works best for them.
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 Supporting Success in School and Beyond for Students with Autism Spectrum Disorders
This newsletter is about supporting students with Autism Spectrum Disorder. You can download it for free as a PDF file.
Life Landscapes: Parents talk about raising children with disabilities
This book has many stories written by parents across a range of ages, cultures, geographic locations in the province of Saskatchewan. There are also photographs of the families.
Life Planning for Adults with Developmental Disabilities: A Guide for Parents and Family Members
A book for families of children and adults with DD to help plan for the future. They will learn how to choose the best place for their loved ones to live when they leave home and how to find meaningful work and recreation activities for them.
Listening to Family Caregivers: The Need to Include Family Caregiver Assessment in Medicaid Home-and Community-Based Service Waiver Programs
This report is about how well the needs of family caregivers are assessed when states evaluate the needs of older people and adults with disabilities.
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.
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, and both can be downloaded as PDF files.
Reflections From A Different Journey: What Adults With Disabilities Want All Parents to Know
This book has a collection of 40 essays written by adults with various disabilities. Each has advice for parents of children with disabilities.
Revolutionary Common Sense—153 Reproducible Articles: How You Can Create Positive Change for People with Disabilities
This book contains articles about advocating for, as well as working with people who have disabilities. It is written by the parent of a son with a disability.
Sibling Study Report
Easter Seal's Sibling Survey report about the experiences of sibling caregivers.
Still in the Shadows with Their Future Uncertain A Report on Family and Individual Needs for Disability Supports (FINDS), 2011
This 2011 report summarized how people with disabilities were 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
This toolkit has everything an agency needs to start a respite care training program to support the parents of children with disabilities.
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
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.
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.
Archives of the National Information Center for Children and Youth with Disabilities
Until 2013, NICHCY was the national clearinghouse of information on disabilities and disability-related issues, with a special focus on children and youth (birth to age 22). It's archives are available online.
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.
Conversations that Matter
This website has many short video presentations about person-centered planning and supports. They have been done by experts in the field.
Coping With Disaster: Suggestions for Helping Children With Cognitive Disabilities
This webpage explains how to help children with cognitive disabilities after a disaster.
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 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 Positve Behavior Support Network - Facebook Page
This Facebook page helps bring people together who are working on positive behavior supports.
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.
Illinois Life Span Project
A central source of information about services available to persons with developmental disabilities in the state of Illinois.
Intellectual Disability: Promoting Daily Living Skills in Adults
This sheet gives ideas on teaching life skills to people with disabilities.
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.
Our-Kids Listservs
These e-mail lists are for the families of children and adults with disabilities
Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder
This book provides information about young children who have sensory processing difficulties.
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.
Project Hope
This website has information about how to get help with mental health needs. It is prepared for DSPs who support people with intellectual disabilities.
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.
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.
SpecialNeeds.com
This website has many resources for families with children with disabilities.
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.
Vision Library for Enhancing Quality of Life
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 film looks at the lives of five families who have children with disabilities. It shows the problems they face, and the rewards and stresses of adapting to their child's condition.
Organizations, Programs, and Projects
Accessible Journeys
This agency plans vacations 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.
Center for Disability Information and Referral
This Center is a primary source of quality information on disability for residents of Indiana.
Developmental Disabilities Lecture Series
This community education program features national speakers and reviews state-of-the-art practices for people with developmental disabilities.
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 Support Advisory Council
A Louisiana group that keeps a watchful eye on the delivery of community and family supports.
Family Support Network
This agency coordinates services for families that include a child who has a complex mental health diagnosis living in southeastern Massachusetts.
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.
Illinois Life Span Project
A central source of information about services available to persons with developmental disabilities in the state of Illinois.
Lucky Mindy Adventures
Escorted travel for individuals with disabilities.
Missouri Family to Family
This organization delivers high quality information for people with developmental disabilities and their families. It also provides chances for peer support, leadership development, and volunteerism.
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 website to access information and many resources about family support.
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.
Planned Lifetime Advocacy Network
This organization helps parents make sure their son or daughter with disabilities will have a great future.
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
This agency offers supervised vacation trips for people with disabilities.
The Community of Practice for Supporting Families of Individuals with Intellectual & Developmental Disabilities
This partnership develops systems of support for families of persons with intellectual and developmental disabilities.
Trips, Inc., Special Adventures
Trips, Inc., provides travel opportunities to people of various abilities in a safe, respectful and fun atmosphere.
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
Illinois Parents of Adults with Developmental Disabilities Unite
This Yahoo! group helps parents, self-advocates, siblings and others to share information about what is happening in the state of Illinois.
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?
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
Linda Perry
Linda has over 35 years experience in supporting people with disabilities. She is the Executive Director of the Vela Microboard Association.
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...
Pam Walker
My research interests include community living, family supports, recreation, meaningful daytimes, and the social geography of disability.


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This web site is maintained by the Research and Training Center on Community Living with support from the National Association of State Directors of Developmental Disabilities Services, the Human Services Research Institute and the Administration on Intellectual and Developmental Disabilities. E-mail weste050@umn.edu.
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