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Family Advocacy
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 of The MENTOR Network
Product Categories
Books, Publications & Reports (printed and/or online) (42 Products)
Electronic Media (43 Products)
Organizations, Programs, and Projects (35 Products)
Online Forums (3 Products)
Other (5 Products)
People Who Can Help (6 Products)
Books, Publications & Reports (printed and/or online)
 | "IQ of 63-So What!" Going Beyond Everybody Else's Expectations
Ben shares his story. His message is clear as explains why Inclusion in the classroom is so important for students with disabilities. | | A Guide to Consent
This guide explores policy, legal, and programmatic implications of topics vital to self-determination. | | 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
This book tells the story of two children who were deaf-blind and had intellectual disabilities. | | ADA & Youth Issues Handouts
PACER staff have written and updated 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.
| | 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. | | Adults with Down Syndrome
This book addresses issues that affect adults with Down syndrome. It highlights research and gives practical advice to these adults, as well as their families and friends, to support them in leading healthy and independent lives. | | Alphabet Kids - From ADD to Zellweger Syndrome
The book "Alphabet Kids" is a guide to developmental, neurobiological, and psychological disorders for parents and professionals
| | 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 shows how they help these people get through the day, and also how people with Asperger's make the world a better place. | | 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. | | Can I tell you about Asperger Syndrome? A guide for friends and family
This is a book for 7 to 15 year olds. A young boy with Asperger Syndome explains his disability. | | Characteristics of Selective Mutism: Evidence For An Anxiety Related Etiology
This book provides the data of responses to questionnaires from over 400 families about Selective Mutism. The questionnaires have 165 questions, covering everything about Selective Mutism and the responses provide much needed info on the disorder. | | Children with a Disability - Support for Parents
This fact sheet tells how to help parents of a child with a disability. It is from the Better Health Channel website of the State of Victoria, Australia. | | Connections
This quarterly magazine has many stories and articles to support self-advocates and family advocates. | | Exceptional Parent Magazine
A monthly magazine devoted to parents and professionals involved in the care of individuals with developmental disabilities. | | Family and the IFSP Process: Training in Family-Centered Approaches
This product is a video and facilitator's guide to provide training on the IFSP process. | | Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters
This book was written for young people who have a brother or sister with Down Syndrome. It tackles a lot of topics they may want answered on this subject.
| | 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. | | I Am Much More Than You Think: Plain Talk About Me and Other Things You'll Want to Know
An interactive book for children, youth and young adults with disabilities that teaches self-advocacy. | | 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. | | More Than a Mom: Living a Full and Balanced Life When Your Child has Special Needs
A book which explores how women can lead rich, fulfilling personal lives while parenting a child with special needs. | | Navigating the System: An Advocacy Handbook for Parents of Children with Intellectual Disabilities
This user-friendly guidebook helps families of people with disabilities make their way through a variety of service and support systems, helping them think about how programs and services work and how parents can get what their child needs. | | 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. | | New Vision:Training Parents as Early Intervention Coordinators
A curiculum designed to train parents of children with disabilities to become early intervention coordinators. | | 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 a disabilities go out into the world, and what to do about addressing those concerns. | | Planning Partners (Trainer Guide)
This product provides a fun, interactive workshop curriculum to teach people with disabilities and a planning partner (relative, friend, staff) how to advocate for themselves, communicate effectively, resolve conflict and develop life goals. | | 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. | | SAFE BEGINNINGS: Protecting Our Children from Sexual Abuse
SAFE BEGINNINGS is an inclusive parenting book to support parents and child care providers in the prevention of sexual abuse. | | Schuyler's Monster: A Father's Journey with His Wordless Daughter
A book by Robert Rummel-Hudson 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
A document written for parents who have children with disabilities in Arlington County, Virginia. It helps families plan and make decisions for their children as they enter adulthood. | | 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. | | 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 and 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
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 Position Statement on Self -Determination
This explains the Arc's position on the right of people with disabilites to live self-determined lives. | | The Everyday Guide to Special Education Law
The Everyday Guide to Special Education Law is an essential tool for parents to help them get the best education possible for their child with disabilities. This book is also a great resource for teachers and school administrators. | | They Created Us
This book is about the Mercado family and what happens when they find their son has a condition called Hflu Meningitis. To help their son have a good life, the family works through a system that is hard to understand and doesn't listen to what they need. | | 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.)
| Autism Hangout
An online resource that compiles news, knowledge and personal experiences on how best to thrive with autism. | | Beyond Fat City
In this DVD, Richard Lavoie, creator of the original F.A.T. City Workshop, reviews the history & philosophy of the project, the major trends & issues in the field of learning disabilities since 1987, and the challenges ahead for parents & educators.
| | Children's Disabilities Information: Essential articles and resources empower parents of children with disabilities and special needs.
A web site for families. It has many different types of information for parents of children with special needs or disabilities. | | Colorado Wait List Litigation
This is an update of the results of a lawsuit brought against "violation of federal Medicaid law, the ADA, Section 504 of the Rehabilitation Services Act of 1973 and the US Constitution." The lawsuit was aupported by the ARC of Colorado.
| | 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 Strategies For Parents Who Have Children With Disabilities
This online article shares advice for parents of newly-diagnosed children and youth. | | DownSyndrome.com
This website gives parents who have a child with Down syndrome and others a place to share thoughts and make friends. | | Emma's Gifts
A film 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. | | 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
Article about cost of raising a child with disabilities. | | Family and the IFSP Process: Training in Family-Centered Approaches
This product is a video and facilitator's guide to provide training on the IFSP process. | | Fragile X Family
A documentary film about woman with Fragile X Syndrome who is
struggling to raise three children with the syndrome.
| | Free and Appropriate Public Education
This DVD was developed for school districts that want to understand the Federal Education Law. It's ideas may help districts to prevent lawsuits stemming from violation of this law as it relates to children with disabilities. | | 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. | | Future Horizons, INC.
This organization shares information about Autism. It provides workshops, has a magazine and many publications. | | How Come You Walk Funny?
This film presents parents who have chosen to enroll their non-disabled kids in a kindergarten program designed to promote inclusive behavior in able-bodied children and self-advocacy skills in those with disabilities. | | Ideal Lives Project
Ideal Lives is a web research and consultation service that specializes in practical information on products and services for parents and professionals on many disability-related topics. | | Illinois Life Span Project
A central source of information about services available to persons with developmental disabilities in the state of Illinois. | | 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. | | Joshua's Road to Self Determination (video)
A 23 minute video Joshua Golden's life and moving toward Self-determination: A life and home of his own. | | 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. | | Labeled Disabled
A documentary film about a curriculum that is designed to help children understand physical disabilities. It is available on DVD in two versions: a home/personal version and an educational/institutional version. | | Making Your Case
An online course designed to help families and people with disabilities learn about communicating with public officials to advocate for positive change for people with disabilities. | | Monday Morning in Washington, DC
A weekly "free" e-newsletter detailing information of importance to parents, children, and individuals with disabilities. | | National FindFamily Registry
This web site helps families of people with disabilities who are separated find each other. | | 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 | | 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. | | Project Goal/ Electronic Resource Guide
An electronic resource guide for persons with disabilities and their families. | | Selective Mutism Foundation Website
To promote further research, advocacy, social acceptance, and the understanding of Selective Mutism as a debilitating disorder. | | Shelter for All
Shelter for All helps people with disabilities who are homeless, it is located in Mississippi. | | Symbols for Life
Symbols for Life is a USB flash drive which holds over 2500 photos and symbols which you can use to support the meaning of text for people with developmental disabilities. Words on their own can be confusing.
| | The ARC Link
"TheArcLink" provides information on services and other resources for people with developmental disabilities and their families. Details about TheArcLink's future are listed in the full description. | | The Community Imperative
A video record of a national conference held in 2002 affirming the rights of people with developmental disabilities to live in the community. | | The Fathers Network
A website that provides current information and resources to assist all families and care providers involved in the lives of children with special needs, especially fathers. | | The Kennedy Foundation Public Policy Guide
This website has information and articles about the federal policy, and government agencies that affect people with disabilities. | | The Third Parent
A short film about the relationship between an eleven-year-old girl and her noon-verbal five-year-old brother who has autism. | | 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. | | Through the Looking Glass
Through the Looking Glass (TLG) is a web site that offers services for families with a family member who has a disability. They also support a parent-to-parent network where parents with disabilities can exchange ideas. | | 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. | | 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
| Autism Speaks
An organization which funds research into the causes, prevention, treatments, and cure for autism, and is committed to raising public awareness about autism | | Break Through Inc.
Since 1978 our mission has been to expand awareness of and sensitivity towards persons with disabilities. We will motivate people of all abilities not only to work with others, but to encourage one another as well! | | 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. | | Consortium for Citizens with Disabilities (CCD)
An organization based in Washington, DC that coordinates efforts among many disability advocacy organizations. | | Family Support Advisory Council
A Louisiana group that keeps a watchful eye on the delivery of community and family supports. | | Family Voices
Clearinghouse for information concerning the health care of children with special health needs. | | Future Horizons, INC.
This organization shares information about Autism. It provides workshops, has a magazine and many publications. | | Illinois Life Span Project
A central source of information about services available to persons with developmental disabilities in the state of Illinois. | | Making Your Case
An online course designed to help families and people with disabilities learn about communicating with public officials to advocate for positive change for people with disabilities. | | 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.
| | 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 Association for Down Syndrome
This organization is for individuals with down sydrome and their families. | | National Coalition on Self-Determination
The National Coalition on Self-Determination has been launched | | National Down Syndrome Congress
The National Down Syndrome Congress (NDSC) promotes the interests of persons with Down syndrome and their families through advocacy, public awareness, and information dissemination on all aspects of Down syndrome. | | National Down Syndrome Society
An international organization for persons with Down Syndrome and their families | | National FindFamily Registry
This web site helps families of people with disabilities who are separated find each other. | | 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. | | 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)
An organization providing education and advocacy for parents. | | 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 | | Planned Lifetime Advocacy Network
PLAN is a Vancouver-based non-profit created by and for families who have a relative with a disability. The organization, along with its affiliates, work to create personal networks for the relative and to ensure a safe and secure future. | | Project Goal/ Electronic Resource Guide
An electronic resource guide for persons with disabilities and their families. | | Protected Tomorrows
An advocacy organization that seeks to improve the lives of people with special needs through comprehensive life planning. | | Shelter for All
Shelter for All helps people with disabilities who are homeless, it is located in Mississippi. | | 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. The ultimate goal is to make disability advocacy community more culturally diverse. | | Texas Microboard Collaboration
This program is making it easier for families and others in Texas to start microboards. | | The Arc
The Arc of the United States is an organization that advocates for people with intellectual disabilities and related disabilities. | | The Fathers Network
A website that provides current information and resources to assist all families and care providers involved in the lives of children with special needs, especially fathers. | | 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
An initiative to stop the use of a hurtful word. It was started by two 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. | | Web Site for T.A. Alliance for Parent Centers
A website with information about all of the Parent Training and Information Centers in the United States |
Online Forums
| 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. | | DownSyndrome.com
This website gives parents who have a child with Down syndrome and others a place to share thoughts and make friends. | | 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. |
Other
| Developmental Disabilities Lecture Series
A community education program about state-of-the-art practices for people with developmental disabilities. | | 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 | | Respectful Language Bookmark
This bookmark is available for download at no cost.
"Words can hurt or words can welcome - language shapes our attitudes." | | 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. | | The Arc Online Legislative Action Center
Interactive legislative online action center to contact Congress. |
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,... | | Bob Jones
I am an instructor in the two-year Disability and Community Support program at Red River College College. I have been involved over the last two years with a group of people conducting "retreats" under the general title; "Developing and Sustaining Lead... | | 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... | | Deborah Reidy
Deborah Reidy is President of Reidy Associates, a consulting service which helps to create organizations that contribute to the social good. Reidy Associates specializes in developing leaders, planning and implementing desired futures, and building te... | | 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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