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Family Advocacy
  >>Located in Store(s): Family Place

Provides information, resources, and names of organizations that help families advocate effectively for their family member with a disability.

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Managed by: Jennifer Fuglestad (Jennifer.Fuglestad@thementornetwork.com) of The MENTOR Network

Product Categories
Books, Publications & Reports (printed and/or online) (37 Products)
Electronic Media (27 Products)
Organizations, Programs, and Projects (40 Products)
Online Forums (2 Products)
Other (3 Products)
People Who Can Help (4 Products)

Books, Publications & Reports (printed and/or online)
A Comprehensive Guide to Intellectual and Developmental Disabilities, 2nd Edition
This is a textbook with a broad range of information about people with intellectual disabilities. It also has information helpful to family members, educators, social workers, researchers, and health professionals.
A Part or Apart? Disability and Inclusion in the Faith Community
This photo essay shows people with disabilities being included in their faith communities. There are also written stories about disability and inclusion, and a discussion guide to help everyone talk about what they see.
A World Without Words: The Social Construction of Children Born Deaf and Blind
This book tells the story of two children who were deaf-blind and had intellectual disabilities. It is written by a researcher who studied them.
ADA & Youth Issues Handouts
These articles on topics of interest to families and Youth related to their rights under the American's with Disabilities Act. All articles are available on the web.
After the Diagnosis of an Autism Spectrum Disorder: A Resource for Families Whose Child is Newly Diagnosed
This publication is designed to provide Indiana families a place to start to navigate systems after their child receives an autism spectrum disorder diagnosis. You can download it as a PDF.
Alphabet Kids - From ADD to Zellweger Syndrome A Guide to Developmental, Neurobiological and Psychological Disorders for Parents and Professionals 2nd edition
This book explains 70 different disability labels sometimes given to children.
Appreciating Asperger Syndrome
This book explains the traits of people who have Asperger's syndrome. It tells the story of a mother and her son, as well as stories from others who have Asperger's.
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.
Can I Tell You about Autism?
This book explains what it is like to have autism. The first part is written for children, while later chapters are written for adults and explain how they can help.
Characteristics of Selective Mutism: Evidence For An Anxiety Related Etiology
This book provides the answers to many questions about Selective Mutism. The information is based on survey research done involving over 400 families.
This quarterly magazine has many stories and articles to support self-advocates and family advocates.
Coping Strategies For Parents Who Have Children With Disabilities
This article shares advice for parents of newly-diagnosed children and youth. You can read it online.
Does She Know She's There?
This book is written by a mom who had a daughter with cerebral palsy in 1961.
Educating Policymakers to Support Disability & Culturally Diverse Community Issues
This presentation encouraged people with disabilities and people of color to advocate with one voice. It also had tips for talking with policymakers. It was given at the 2014 TASH conference.
Exceptional Parent Magazine
A monthly magazine devoted to parents and professionals involved in the care of individuals with developmental disabilities.
From Institutions to Individuals: On becoming person-centred
This book has stories written by, for, and about people who have intellectual disabilities.
From Stumbling Blocks to Stepping Stones: Help and hope for special needs kids
Shari tells her story about growing up with disabilities. She also offers great advice for people with disabilities and families. Shari is a certified teacher and has a child with a disability.
Guiding Your Teenager with Special Needs through the Transition from School to Adult Life Tools for Parents
This book is about helping teens with disabilities prepare to become adults.
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. Can download as PDF file for free.
Impact: Feature Issue on Stories of Advocacy, Stories of Change From People with Disabilities, Their Families, and Allies
This newsletter has eleven stories that show how systems change has come about through advocacy by people with disabilities and their allies. It is available both online and as a print publication.
Jenny Fox’s Search for Semi-Independent Living in Hennepin County
This letter is from the parents of a young adult with a developmental disability. It tells their daughter's life story and voices concerns they have with county services, especially for housing.
Negotiating the Special Education Maze: A Guide for Parents and Teachers, Fourth Edition
This book explains the special education process and helps parents get their children through it.
Parenting an Adult with Disabilities or Special Needs: Everything You Need to Know to Plan for and Protect Your Child's Future
This book is about the concerns parents have when their adult children with disabilities go out into the world, and what to do about addressing those concerns.
Position Statement on Spirituality
This statement explains the belief that people with disabilities have the right to worship, or not, how and where they want.
Realizing the College Dream with Autism or Asperger Syndrome A Parent's Guide to Student Success
This book is a parent's story about her son with ASD who went to college. The entire book can be viewed online.
Schuyler's Monster: A Father's Journey with His Wordless Daughter
This book is written by a father about his experiences with his daughter Schuyler and her disability.
Securing a Future for Your Child with a Disability: A Parents' Guide to Adult Services in Arlington County
This booklet helps families plan and make decisions for their children as they enter adulthood. It was written for parents who have children with disabilities in Arlington County, Virginia.
Sibling Leadership Network Position Statement on Voting
This statement says that the brothers and sisters of people with disabilities support their right to vote in elections.
Son Rise
This book and movie tells the true story of the first 30 months of life of Raun who has autism.
Son Rise: The Miracle Continues
This book tells the story of a boy with autism and how his family supported him.
Special Education: A Parent's Guide to a Child's Success
This book presents the complexities of the special education experience in a simple-to-understand way. It offers practical tips, checklists and strategies on how to make the system work to insure the educational success of all children.
Special Needs: Get a Game Plan, Hurricane Preparedness
This three-page fact sheet has a set of steps for families to follow to be ready for a disaster, such as a hurricane. This guide focuses on meeting a family members specialized health and medical needs.
Supporting Families When Parents Have Intellectual Disabilities
This booklet is about helping parents who have disabilities.
The Arc's Position Statement on Self -Determination
This explains the Arc's position on the right of people with disabilites to live self-determined lives.
They Created Us
This book is about the Mercado family and what happens when they find their son has a condition called Hflu Meningitis. The book shows how the social service system, and the school system presented barriers that the family needed to overcome.
Using the ADA for Parents of Children with Disabilities
This fact sheet talks about a part of the ADA that protects parents of children with disabilities.
Yes! She Knows She's There
This book celebrates Catherine's 35th birthday and the 10th anniversary of her move into her own home.
Electronic Media (Videos, CDs, T.V., Radio, Websites, etc.)
This is a website about many aspects of autism. On the website are articles related to current information involving autism.
Beyond Fat City
This video teaches viewers how it feels to have difficulty with learning. It tells about frustration, anxiety, and tension.
Children's Disabilities Information
This website has many articles to help parents. Its tagline is "Essential articles and resources empower parents of children with disabilities and special needs."
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.
Difficult Families?
This short YouTube video shows three different Moms talking about what it means to be "difficult familiy."
Emma's Gifts
This film is about Emma who was born with Down Syndrome, which makes her different from her twin sister, Abigale. Emma's story is told through the eyes of her parents. You can purchase a DVD copy.
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.
Families Pinched By Cost of Special Needs Care
This Disability Scoop article explains how these costs are disproportionately affecting low-income families.
Fragile X Family
This documentary film is about a woman with Fragile X Syndrome who is struggling to raise three children with the same syndrome. You can watch the entire 11 minute film online.
From Puddles to Pride
This animated slideshow shares a mother’s poem about her son, his disability, and her family’s transformation.
Future Care Planning: A Roadmap for Family Caregivers
This book guides people through the steps of planning for the future. There are sections for family members and another for people with disabilities. There are many worksheets.
Informing Families: Today and Tomorrow
This website has information on the developmental tasks of people with disabilities at six stages in life. It also explains the resources available to help.
Love that Max: A Special Needs Blog
A blog from a parent who has a son with cerebral palsy. She posts about her parenting experiences and provides useful information for other parents who have children with disabilities.
National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities
This webpage is a nice summary of the National Goals Conference that was held in 2015. There are many articles that can be downloaded, and video clips with researchers and persons with disabilities explaining the 10 areas focused on.
PACER Parents Talk Blog
A blog that allows parents and advocates to share information.
PACER's National Bullying Prevention Center
A website and resource to help stop bullying. It has a lot of information about how to stop bullying at school.
Partners in Education
This self-directed, online course helps parents of children with developmental disabilities understand and maximize the special education system.
Partners in Policy Making Online Courses
This online curriculum teaches self-advocates, families, and DSPs many things to help them be effective advocates for change. Anyone can register and take the courses for free.
Son Rise
This book and movie tells the true story of the first 30 months of life of Raun who has autism.
The Arc Online Legislative Action Center
This website provides opportunities for advocates to contact US Senators and Congress people about important issues for people with disabilities.
The Community Imperative Video
A video record of a national conference held in 2002 affirming the rights of people with developmental disabilities to live in the community. You can watch it online.
The Kennedy Foundation Public Policy Guide
This website has information and articles about the federal policy, and government agencies that affect people with disabilities. It has useful information for advocates at the federal level.
Think College
This website has information and links about helping people with disabilities attend college. It has separate areas for use by students, family members and professionals.
Transition, It's a Brave New World
This online article is an interview about the transition to adult life for young people who have disabilities.
This website has all kinds of information for families of children and youth with "learning and attention issues."
Web site resources for advocates
This webpage has links to many others that are helpful to disability advocates.
Wills, Trusts and Estates
An on-line class to write a will and set up an estate. After you take the class, you'll be ready to meet with your lawyer to do this. Included: how to decide who to leave money to, setting up an account, and choosing who will carry out your wishes.
Organizations, Programs, and Projects
This publishing company specializes in research-based materials about people on the autism spectrum.
Autism Society of America
This national organization is dedicated to increasing public awareness about autism. It provides information, education, and advocacy.
Autism Speaks
This national organization has three main purposes. It provides services, conducts research, and provides advocacy, all to make life better for people on the Autism spectrum.
Break Through Inc.
This organization provides training on sensitivity towards persons with disabilities. It is led by Ben Anderson, a person who has cerebral palsy.
Center for Autism and Related Disabilities
A university-affiliated resource center at the University at Albany (CARD - Albany) that brings research and practice together in community settings.
Center for Disability Information and Referral
This Center is a primary source of quality information on disability for residents of Indiana.
Consortium for Citizens with Disabilities (CCD)
An organization based in Washington, DC that coordinates efforts among many disability advocacy organizations.
Denver Metro Community Parent Resource Center
This organization supports parents from under-represented groups in understanding their child's disability. It provides them with information so they can become stronger advocates.
Disability Advocates: Wisconsin Network (DAWN)
This organization brings together everyone who advocates for people with disabilities throughout Wisconsin. Its website has information on what is happening with the state and federal programs that support people with disabilities.
Disability Rights Network of Pennsylvania
This is the Protection and Advocacy organization for the state of Pennsylvania. They have an extensive list of downloadable publications on their website.
Family Support Advisory Council
A Louisiana group that keeps a watchful eye on the delivery of community and family supports.
Family Voices
This organization supports and advocates for families that include children and youth who have special healthcare needs.
Future Horizons, INC.
This publishing organization shares information about Autism. It also provides workshops, and has a magazine.
Good Life Networks
This family-led initiative helps people with disabilities create friendships and relationships in the community. It is located in Cincinnati, Ohio.
Kids Together, Inc.
Kids Together, Inc. is a 501(c)3 non-profit dedicated to the inclusion of children and adults with disabilities. They have a valuable newsletter/listserv with information for parents and self-advocates.
Learn the Signs. Act Early.
This initiative helps parents, doctors, and everyone notice signs of disability in babies and very young children.
Movin' Out, Inc
Movin' Out creates opportunities for people with disabilities and their families to purchase and maintain their own homes, in housing and neighborhoods that are safe, affordable, accessible, and integrated.
National Alliance on Mental Illness
This organization advocates and educates across the US to help people with mental health disabilities.
National Association for Down Syndrome
This organization advocates for and supports individuals with Down syndrome and their families living in the Chicago, Illinois area.
National Down Syndrome Congress
This organization promotes the interests of persons with Down syndrome and their families. It does this through advocacy, public awareness, and information dissemination on all aspects of Down syndrome.
National Down Syndrome Society
A national organization for persons with Down Syndrome and their families
PACER's National Bullying Prevention Center
A website and resource to help stop bullying. It has a lot of information about how to stop bullying at school.
Parent Advocacy Coalition for Educational Rights (PACER)
This organization provides education and advocacy for parents living in Minnesota.
Parents are Experts: Parents Training Parents
A program providing training to parents so they can advocate for their children with disabilities.
Partners in Education
This self-directed, online course helps parents of children with developmental disabilities understand and maximize the special education system.
Peak Parent Center
An organization especially for family members of persons with developmental disabilities that offers many publications and information
Protected Tomorrows
This organization seeks to improve the lives of people with special needs through providing comprehensive life planning. They work with families one-to-one and also provide workshops.
Quality Trust
This agency provides advocacy services for people with developmental disabilities in Washington DC.
Sibling Support Project
This network provides support to the brothers and sisters of people with disabilities. It is known for starting the "Sibshops" program, and also has places where siblings can share stories online.
Stone Soup Group
This organization is devoted to sustaining the well-being of Alaskan children and families with disabilities.
TASH’s Diversity and Cultural Competency in Disability Advocacy Initiative
In 2010, TASH began an initiative to become more inclusive of people from minority cultural groups. It led to a resolution shared with five other national organizations to make the disability advocacy community more culturally diverse.
Technical Assistance Alliance for Parent Centers
This organization provides information and support to all of the Parent Training and Information Centers in the United States
Tennessee Disability Coalition
This alliance of advocacy organizations promotes the full and equal participation of people with disabilities in all aspects of life.
The Arc
The Arc of the United States is an organization that advocates for people with intellectual and developmental disabilities.
The Future of Children: Special Education for Students with Disabilities
"The Future of Children" is an initiative that disseminates timely information on major issues related to children’s well-being through a journal and other publications.
The R-Word Campaign
This initiative is working to stop the use of a hurtful word. It was started by two parents.
Through the Looking Glass
This organization specializes in supporting people with disabilities who are parents.
United Cerebral Palsy (UCP)
The website of United Cerebral Palsy (UCP), a national advocacy organization. This website includes background information about UCP, and also much news about national news affecting persons with cerebral palsy and other developmental disabilities.
Vision for EQuality Inc.
This is a parent-founded, Pennsylvania-based agency that supplies training, advocacy, quality of life monitoring, and support to thousands of people with disabilities and their families each year.
Washington State Fathers Network
This organization is run by and for fathers of kids and adults who have disabilities. It offers dads information, mutual support, and social opportunities.
Online Forums
Caring for Lauren: A mother's journey as caregiver for a young woman with developmental disabilities.
This blog was written by the mother of Lauren-a young person with multiple disabilities. It shared the struggles and joys of caring for Lauren, and also self-direction from the caregiver viewpoint. The blog was discontinued in 2011, but is still powerful.
Does Physical Disability Make a Parent Less Fit?
This blog article tells the stories of two moms who have disabilities. It asks whether having a disability makes someone less fit to be a parent.
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
Life With Trig: Sarah Palin on Raising a Special-Needs Child
Sarah Palin wrote a short article about life with her son Trig, who has Down syndrome.
Respectful Language Bookmark
This bookmark reminds everyone how language can be hurtful, or helpful to people with disabilities. It is available for download at no cost.
People Who Can Help
Al Etmanski
Al Etmanski is the President of A Planned Lifetime Advocacy Network, committed to meaningful and good lives for people with disabilities. He assists individuals and families in life-long planning including estate planning, guardianship alternatives,...
Celia Feinstein
Dr. Feinstein provides consultation and training at the level of local, state and national practices and policies in the areas of self-determination, leadership development, deinstitutionalization, quality management and waiting lists. She has work...
Mike Green
Mike works from a citizen-centered perspective with local people at the center. The focus is on two organizing questions: organizing local citizens and their allies to mobilize their local resources to work together to solve problems, and how agencies ...
Tamar Heller
Dr. Heller directs a large institute and academic program devoted to disability studies and social policy and a national research and training center on aging with developmental disabilities. She has published over 150 publications focusing on aging a...

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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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