Statewide Information Resource & Referral for Advocacy & Service for People with Developmental Disabilities

Group Specific Advocacy

Attention Deficit /Hyperactivity Disorder – CHADD
CHADD is the nation’s leading non-profit organization serving individuals with ADHD and their families.

Aicardi Syndrome Foundation
Information and support for families and friends of children diagnosed with Aicardi Syndrome.

American Printing House for the Blind, Inc.
The American Printing House for the Blind (APH) is the world’s largest nonprofit organization creating educational, workplace, and independent living products and services for people who are visually impaired.

Apostrophe Magazine
“Apostrophe – a quarterly magazine for people with disabilities who are overcoming “can’t,” “shouldn’t,” and “don’t” in their lives.”

Autism NOW
The nation’s source for resources and information on community-based solutions for individuals with autism, other developmental disabilities, and their families. A national initiative of The Arc.

Autism One Radio
A Worldwide, Web-Based Radio Station for the Care, Treatment, and Recovery of Children with Autism. Helping children with autism means providing parents, families, and professionals with the best information, practices, and education in the timeliest manner in the most useful format.

Autism Research Institute
Dr. Bernard Rimland’s unassuming storefront office houses the world-renowned Autism Research Institute, which has improved the lives of thousands of children with autism – bringing relief, hope, and even recovery to families worldwide. New information emerges daily about autism and its surrounding issues. ARI works diligently to apply the new research findings toward developing methods of helping autistic children and their families now. ARI provides free and low-cost information to parents, professionals and the media by mail and on its website.

Autism Society of America
The mission of the Autism Society of America is to promote lifelong access and opportunity for all individuals within the autism spectrum, and their families, to be fully participating, included members of their community. Education, advocacy at state and federal levels, active public awareness and the promotion of research form the cornerstones of ASA’s efforts to carry forth its mission.

Autism Speaks
At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

Autism Today
In 1996 Karen Simmons (author, keynote speaker, and businesswoman in autism-related endeavors) had a vision to simplify the information gathering and evaluating process for families dealing with Autism Spectrum Disorders… and Autism Today was the outcome. Autism Today receives over 2 million hits a month which consists of 55,000 unique visitors and 25,000 members. They are from all walks of life, both urban and rural virtually from around the entire planet! These numbers confirm not only that the need for information is vast but also that the information we provide is relevant to the worldwide community! With our broad database of highly interactive members, we are an excellent established vehicle to conduct surveys and find interested participants for research projects and educational training.

AutismLink
Our mission is to provide opportunities for inclusion, information, and support; to keep parents, family members of individuals with autism spectrum disorders and autistic individuals apprised of news and information, help them in their quest for services, and also in their quest for camaraderie with others in the autism community. We seek to directly help parents by providing opportunities for support, inclusion and information, free of charge.

Brain Injury Association, Inc.
The mission of the Brain Injury Association of America is to create a better future through brain injury prevention, research, education and advocacy.

CHARGE Syndrome Foundation
The mission of the CHARGE Syndrome Foundation is to provide support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identification, cause and management.

CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
Our only mission at CHERUBS is to help families affected by CDH by searching for the cause, prevention and best treatments of Congenital Diaphragmatic through research and awareness while supporting the CDH community.

Down Syndrome Education USA
Down Syndrome Education USA is a new nonprofit organization established to create new opportunities for young people with Down syndrome. We are associated with and work closely with Down Syndrome Education International – a leading research, information and education services organization.

Epilepsy and My Child
This Toolkit was developed by the National Center for Project Access at the national Epilepsy Foundation through Project Access. Project Access is a national initiative funded by the Health Resources Services Administration’s, Maternal and Child Health Bureau to create and implement systems change strategies that improve early detection and treatment for children and youth with epilepsy and seizure disorders.

Epilepsy Foundation
The Epilepsy Foundation is a national, charitable organization, founded in 1968 as the Epilepsy Foundation of America. The only such organization wholly dedicated to the welfare of people with epilepsy, our mission is simple: to work for children and adults affected by seizures through research, education, advocacy and service.

Exceptional Parent
Exceptional Parent magazine’s online resource. Providing information, support, ideas, encouragement and outreach for parents and families of children with disabilities, and the professionals who work with them.

FAS Community Resource Center
The FAS Community Resource Center comprises two communities: A local community in Tucson, Arizona and a virtual Internet community that reaches beyond Tucson across Arizona, all over the United States, and around the world.

FAS Power Point Presentation – Dr. Ed Riley
The following is a presentation on FAS that may be used to educate the community. It was developed through a grant from the National Institute on Alcohol Abuse and Alcoholism, and is made available for use by professionals and lay persons. This presentation was developed by Dr. Ed Riley, a leading research scientist in the field of FAS disorders.

FASworld
FASworld is an international alliance of parents and professionals who do not want to see any more children, teenagers and adults struggle with birth defects caused when their mothers drank alcohol in pregnancy.

Fetal Alcohol Syndrome – Family Resource Institute
The mission of the FAS Family Resource Institute, a non-profit organization, is to identify, understand and care for individuals disabled by prenatal alcohol exposure and their families, and to prevent future generations from having to live with this disability.

Hearing Loss Association of America
HLAA provides assistance and resources for people with hearing loss and their families to learn how to adjust to living with hearing loss.

Illinois Sound Beginnings – Illinois Newborn Hearing Program
The purpose of this website is to provide information that will be of interest and benefit to families with children who are deaf or hard of hearing.

Illinois Yellow Pages for Kids with Disabilities
Wrightslaw built the Yellow Pages for Kids with Disabilities so people can get reliable information and support. Your state Yellow Pages includes many resources – government programs, grassroots organizations, and parent support groups. We are adding evaluators, educational consultants, academic tutors, advocates, attorneys, and others who help parents get services for their childen.

Institute on Disability and Human Development – University of Illinois at Chicago
The Institute on Disability and Human Development (IDHD), a University Center for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) is dedicated to promoting the independence, productivity and inclusion of people with disabilities into all aspects of society.

KASA – Kids As Self Advocates
Kids As Self Advocates (KASA) is a national, grassroots project created by youth with disabilities for youth. We are teens and young adults with disabilities speaking out. KASA knows youth can make choices and advocate for themselves if they have the information and support they need.

Lovaas Institute
The Lovaas Institute provides behavioral treatment utilizing the principles of applied behavior analysis. The Lovaas Model of Applied Behavior Analysis has undergone rigorous research at UCLA under the direction of Dr. Lovaas, proving its effectiveness in treating children with autism.

NAMI – National Alliance on Mental Illness
NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. NAMI advocates for access to services, treatment, supports and research and is steadfast in its commitment to raising awareness and building a community of hope for all of those in need.

National Center on Criminal Justice & Disability
NCCJD will become the national focal point for the collection and dissemination of resources and serve as a bridge between justice and I/DD professionals. The NCCJD will pursue and promote safety, fairness and justice for all people with intellectual and developmental disabilities as suspects, offenders, victims or witnesses.

National Center for Learning Disabilities
The National Center for Learning Disabilities (NCLD) works to ensure that the nation’s 15 million children, adolescents and adults with learning disabilities have every opportunity to succeed in school, work and life. NCLD provides essential information to parents, professionals and individuals with learning disabilities, promotes research and programs to foster effective learning and advocates for policies to protect and strengthen educational rights and opportunities.

National Council on Disability
NCD’s overall purpose is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

National Down Syndrome Congress
The mission of the NDSC is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome.

National Down Syndrome Society
The mission of the National Down Syndrome Society is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy.

National Family Association for Deaf-Blind
The National Family Association for Deaf-Blind (NFADB) is a non-profit, volunteer-based family association. Our philosophy is that individuals who are deaf-blind are valued members of society and are entitled to the same opportunities and choices as other members of the community.
NFADB is the largest national network of families focusing on issues surrounding deaf blindness.

National Fragile X Foundation
The National Fragile X Foundation unites the Fragile X community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for Fragile X.

National Information Center for Children and Youth with Disabilities
We are the center that provides information to the nation on:*disabilities in children and youth; •programs and services for infants, children, and youth with disabilities; •IDEA, the nation’s special education law;•No Child Left Behind, the nation’s general education law; and •research-based information on effective practices for children with disabilities. NICHCY is going away, but its resources are not. Find hundreds of legacy NICHCY publications, as well as our training curriculum on IDEA 2004, in the Center for Parent Information and Resources’ Library a thttp://www.parentcenterhub.org/resources

National Organization on Fetal Alcohol Syndrome
The National Organization on Fetal Alcohol Syndrome is dedicated to eliminating birth defects caused by alcohol consumption during pregnancy and to improving the quality of life for those affected individuals and families.

National Spinal Cord Injury Association
Our mission is to improve the quality of life of all people living with a spinal cord injury or disease.

OASIS @ MAAP – Your Autism Spectrum Oasis
The Online Asperger Syndrome Information and Support (OASIS) center has joined with MAAP Services for Autism and Asperger Syndrome to create a single resource for families, individuals, and medical professionals who deal with the challenges of Asperger Syndrome, Autism, and Pervasive Developmental Disorder/ Not Otherwise Specified (PDD/NOS).

Prader-Willi Association, USA
Link to the National Association for Prader-Willi.

Quality Mall
Welcome to Quality Mall, a place where you can find lots of free information about person-centered supports for people with intellectual/developmental disabilities.

Region 4 Genetics Collaborative Family Resources
Information and resources to help families learn more about:•Rare inheritable disorders diagnosed through newborn screening •The Medical Home •Medical specialists and laboratories that serve children diagnosed with these very rare conditions and their families •Support resources available to families •Frequently asked questions about genetics services

Rush University Medical Center – Autism Resource Center
An expansive listing of resources for parents and families that include someone with the diagnosis of autism.

Sibling Leadership Network
The mission of the Sibling Leadership Network is to provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.

Sibling Support Project
Founded in 1990, the Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.  

StrengthofUs – Online Community for Young Adults from NAMI
StrengthofUs is an online community designed to empower young adults through resource sharing and peer support and to build connections for those navigating the unique challenges and opportunities in the transition-age years.

Summer Camp Directory – A Free Resource Guide for Families with Children Who Have Special Needs
This directory is a product of the Central Directory of Resources at Family Support Network of North Carolina. It is a listing of summer camps, both day and residential, serving children who have special needs.

TEACCH Autism Program
TEACCH is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders.

The Arc Center for Future Planning
Planning ahead can help guide a person with an intellectual or developmental disability (I/DD) to lead a good life as independently as possible. A plan is important throughout all stages of life and especially in the future after the parent or caregiver is no longer able to provide support.

The Arc of the United States
The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

The Autism Program
The Autism Program is a systems development initiative designed to create and enhance community networks that promote best practice in the diagnosis, treatment and education of children with ASD.

Tourette Syndrome Association of Illinois
Tourette is a neurological disorder characterized by tics – sudden, rapid, involuntary movements or vocalizations that occur repeatedly.  The onset of symptoms is before the age of 18.  Symptoms vary widely in intensity throughout one’s lifetime.  Tourette is frequently associated with other disorders including but not limited to Attention Deficit Disorder (ADD or ADHD), Obsessive-Compulsive Disorder (OCD), Anxiety, Depression and Learning Disabilities.

United Cerebral Palsy
UCP’s mission is to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities, through our commitment to the principles of independence, inclusion and self-determination.

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