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Resources to help families
(compiled by and provided here with permission by

ADA American with Disabilities Act Questions and answers about the ADA and how it applies to students with disabilities in the school setting.


Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)

National Attention Deficit Disorder Association

Assistive Technology

AbleData database of commercially available rehabilitation products.

Enabling Devices Toys for Special Children and Products for
Independent Living.

Alliance for Technology Access (ATA) ATA centers can be found
across the country. Locate local centers. This site offers 4 ways to
search for assistive technology.

Family Center on Technology and Disability (FCTD)
Reviews and connections on assistive technology.

IBM Accessability Center
National Library Service for the Blind and Physically Handicapped

RESNA Rehabilitiation Engineering and Assistive Technology Society of North America
S Society of Augmentative and Alternative Communication

Autism Spectrum Disorders
Center on Positive Behavioral Interventions and Supports

Autism Society of America
Tuberous Sclerosis Alliance

Blind / Visually Impaired
American Printing House for the blind. “The world’s largest source for
adapted educational and daily living products since 1850”

Learning, sight and sound made easier. Catalog for products for
the visually impaired and Hard of Hearing.

National Federation of the Blind has a free Braille book program as well as other useful information

American Council of the Blind

American Foundation for the Blind (AFB)

Blind Children’s Center
National Library Service for the Blind and Physically Handicapped
Recording for the Blind and Dyslexic

Brain Injury

Brain Injury Association of America

Brain Tumor
American Brain Tumor Association
National Brain Tumor Foundation

Cancer (All types)

Cancer Information Service
Leukemia & Lymphoma Society

Craniofacial Conditions

Forward Face
FACES: The National Craniofacial Association

Deaf/ Blind

DB-Link National Information Clearinghouse on Children who are Deaf-Blind.

Deaf / Hard of Hearing Learning, sight and sound made easier. Catalog for products for
the visually impaired and Hard of Hearing

Laurent Clerc National Deaf Education Center and Clearinghouse Website on
how IDEA applies to deaf and hard of hearing students.

Alexander Graham Bell Association for the Deaf and Hard of Hearing.

American Society for Deaf Children
American Speech-Language Hearing Association (ASHA)
National Association of the Deaf
Registry of Interpreters for the Deaf
Self Help for Hard of Hearing People, Inc (SHHH)


National Diabetes Information Clearinghouse

American Diabetes Association

Dietary / Special Diets Source for low sodium foods

Disability Related maintains a resource library of products in the TA & D
The Beach Center on Disability. Can connect you to the Parent to Parent program in your state. .

Family Village “A global community of disability
related resources.

National Association of Protection and Advocacy Systems (NAPAS)

National Library Service for the Blind and Physically Handicapped
National Organization on Disability (NOD)
National Organizatoin on Fetal Alcohol Syndromes (NOFAS)
TASH (formerly the Association for Persons with Severe Handicaps)
World Association of Persons with disabilities

Diagnosis / Disease Specific
Brain Injury Association of America

Congenital Heart Information Network

Kidney Corner

United Mitochondrial Disease Foundation

National Institutes of Health
National Institute of Allergy and Infectious Diseases
National Kidney and Urologic Diseases Information Clearinghouse
National Institute of Diabetes and Digestive and Kidney Diseases
National Heart, Lung, and Blood Institute

NORD (National Organization for Rare Disorders)

Foundation for Icthyosis and Related Skin Types International Rett Syndrome Association The ARC of the US is the national organization of and for people
with Mental Retardation and related disabilities and their families. Disease Info. Search. For information on specific genetic
conditions. NORD, the national Organization for Rare Diseases

The Office of Rare Disorders at eh National Institute of Health

National Heart, Lung, and Blood Institute Information Center

National Institute of Neurological Disorders & Stroke (NINDS)

American Liver Foundation
Angelman Syndrome foundation
Asthma and Allergy Foundation of America
Children’s Craniofacial Association
Chronic Fatigue and Immune Dysfunction Syndrome Association (CFIDS)
National Chronic fatigue Syndrome and Fibromyalgia Association (NCFSFA)

Crohn’s & Colitis Foundation of America

Human Growth Foundation Foundation for those with disorders of growth and growth

Huntington’s Disease Society of America

Hyrdocephalus Association

Immune Deficiency Foundation
International Dyslexia Association
Little People of America – National Headquarters
Lupas Foundation of America
March of Dimes Birth Defects Foundation
National Ataxia Foundation
National Fragile X Foundation
National Gaucher Foundation

National Limb Loss Information Center – Amputee Coalition of America

National Lymphedema Network
National Multiple Sclerosis Society
National Neurofibromatosis Foundation
National Organization for Albinism and Hypopigmentation (NOAH)
National Reye’s Syndrome Foundation
Nattional Scoliosis Foundation
National Sleep Foundation
National Spinal Cord Injury Association
National Stuttering Association
National Tay-Sachs and Allied Diseases Association
Neurofibromatosis Inc
Osteogenesis Imperfecta Foundation
Prader-Willi Syndrome Association
Scleroderma Foundation
Spina Bifida Association of America
Stuttering Foundation
Tourette Syndrome Association
Tuberous Sclerosis Alliance
United Cerebral Palsy Association, Inc.
United Leukosystrophy Foundation
Vestibular Disorders Association, Inc.
Williams Syndrome Association, Inc

Down Syndrome

National Down Syndrome Congress
National Down Syndrome Society

Early Education National Early Childhood Technical Assistance Center. Helps you find the early intervention contacts in your state

Head Start Bureau
Zero to Three (National Center for Infants, Toddlers and Families)

Education / IEP & 504
The Office of Special Education Programs

Wrightslaw website on all aspects of the IEP and 504 laws, procedures
and proven methods. Includes seminars all over the country.

A CEC website with IDEA related information

Family and Advocates Partnership for Education

The council for parents advocates and attorneys. A great website with list-serve relating to IEP’s, advocacy, and laws relating to special education.

Special Education in Plain Language – Introduction

National Center on Educational Outcomes
offers Online Accommodations Bibliography database.

National Center for Education Statistics

Search tool for information on schools (public and private) across the country.

CCSSO (Council of Chief of State School
Officers) state specific information on schools, school districts, and standards, etc.

Education Commission of the States (ECS) national grid
database tracking all the states No Child Left Behind data.

School Information Partnership. Public reports under NCLB

ERIC Educational Resources Information Center.

Educator’s Reference Desk Access lesson plans, links to
online education information, and archive responses.

The Regional Educational Laboratory Programs

10 Regional labs funded by the US Department of Education providing information about “promising programs”

GLARRC Grerat Lakes Area Regional Resource Center (Great Lakes Area Only) www.glarrc.orf/Resources/NSPD.cfm National State Policy Database, the place to find out your state’s education rules and regulations for Special Education

National Center for Education Statistics

IDEA Individuals with Disabilities Education Act for information on education statistics.

NASBE (National Association of School Boards of Education) state level school health policy database.

HEALTH Resource Center (National Clearinghouse on Postsecondary Education for Individuals with Disabilities

CADRE (Consortium for Appropriate Dispute Resolution in Special Education)

Closing the Gap (for information on computer technology in special education and rehabilitation

Council for Exceptional Children (CEC)

National Association of Private Special Education Centers (NAPSEC)
National Resource Center for Paraprofessionals in Education and Related Services
Special Needs Advocate for Parents (SNAP)

Epilepsy / Seizures

Epilepsy Foundation – National Office

GI (Gastroenterology) / Digestive Health

National Digestive Disease Information Clearinghouse

Growth Disorders

MAGIC Foundation (Major Aspects of Growth Disorders in Children)

Heart / Cardiac

American Heart Association – National Center

National Heart, Lung, and Blood Institute Information Center
Congenital Heart Information Network

Health Care Access

AMA Physician Select is provided by the American Medical Association. It is a database of virtually every licensed physician in the United States.

HRSA Health Resource and Services Administration A nationwide network of community and migrant health centers and health care for the homeless.

Hospital Related Resources

National Association of Hospital Hospitality Houses Can help patients and their families find lodging and other supportive services when confronted with medical emergencies.

Kidney / Urologic

National Kidney and Urologic Diseases Information Clearinghouse

American Association of Kidney Patients (AAKP)

Learning Disabilities (other)

LDOnline (Website on learning disabilities)
Learning Disabilities Association of America (LDA)
National Center for Learning Disabilities (NCLD)
Nonverbal Learning Disorder (on the web)
Nonverbal Learning Disorders Association
Recording for the Blind and Dyslexic
Schwab Learning

Legal Resources

WWW.NLS.ORG Neighborhood legal Services, Inc.
A “not for profit agency located in Buffalo NY which provides free legal services to persons with low income and disabilities.

A great source of information on the laws regarding Medicaid, Medicare, SSI, and ADA and much more.


Children’s Liver Alliance


National Heart, Lung, and Blood Institute Information Center

American Lung Association

Asthma and Allergy Foundation of America
Cystic Fibrosis Foundation

Medicare / Medicaid & Other Insurance Information

“AIMMM is a policy forum that identifies and advances responsible
forums in Medicare and Medicaid needed to increase the health, independence, and self sufficiency of persons with disabilities.

Families USA (The Voice for Health Care Consumers)
Information on Medicare, Medicaid, Children’s Health Insurance Plan (CHIP), and managed care.

“State Map” to find your state Medicaid office, eligibility requirements and other state
health insurance offices.
Health care insurance for uninsured children

Mental Health / Emotional Health / Behavioral Health

Center for Mental Health Services locator service
National Institute on Mental Health (NIMH)

Center for Mental Health in Schools, UCLA “Search and Quick Find”
you can search the center’s resources .

Center for School Mental Health Assistance, University of Maryland This center maintains a library of resource materials and publications and a directory of school mental health programs.

Center on Positive Behavorial Interventions and Supports

Research and Training Center on Family Support and Children’s Mental Health

Anxiety Disorders Association of America

Center for Effective Collaboration and Practice (CECP) Improving Services for Children and Youth wit Emotional and Behavioral Problems)

Child and Adolescent Bipolar Foundation
National Mental Health Information Center

Depression and Bipolar Support Alliance

Federation of Families for Children’s Mental Health

Internet Mental Health
Kristen Brooks Hope Center
Mental Help Net
National Alliance for the Mentally Ill (NAMI)
National Association for the Dually Diagnosed (NADD) (mental illness and mental
National Center for PTSD (Post Traumatic Stress Disorder)
Obsessive Compulsive Foundation, Inc

Mitochondrial Disease Foundation

Muscular Dystrophy
Muscular Systrophy Association (MDA)

National / Federal Information United States printing office. Access published information on
a variety of subjects.
Connect to your Parent Training Information Center. The American Self-Help Group Clearinghouse helps connect you to support groups and networks available. National Dissemination Center for Children with Disabilities.

Healthfinder connects you with a ranges of health related resources. Spanish version

Medline Plus Site of the US National Library of Medicine offers everything from an online medical encyclopedia to interactive tutorials for patients.

Aplastic Anemia & MDS International Foundation, Inc.

The American Academy of Family Physicians provides this site of “health information for the whole family”

CHID Combined Health Information Database A bibliographic database produced by the health related agencies of the Federal government

Health Information Resource Database database of organizations and government offices that proved health information upon request.

Clinical Trials Database

National Dissemination Center for Children with Disabilities (NICHCY). a clearinghouse of national and state resources

Family Voices A Nattional coalition speaking for children with
special health care needs.

The Arc (formerly the Association for the Retarded Citizens of the U.S.)

Arthritis Foundation

NH State Specific

New Hampshire Family Voices

Family resource connection NH state library, Family and child development calendars. Statewide calendars on upcoming events and

New England Specific

Neuomuscular Diseases

National Muscular Dystrophy Association

Provider Information

National Resource Center for Family Centered Practice

Recreation / Adaptive Sports

National Center on Physical Activity and Disability Find a variety of
recreation, leisure and fitness activities.

American Therapeutic Recreation Association
Special Olympics International

Disabled Sports USA

Rehabilitation / Therapies

NARIC National Rehabilitation Information Center offers and online searchable database of projects funded by NIDRR (National Institute on Disability and Rehabilitation Research.

American Occupational Therapy Association (AOTA)
American Physical Therapy Associatio (APTA)
American Therapeutic Recreation Association


ARCH National Respite Network & Resource Center (respite locator service)

Sensory Integration Disorders directory of DSI parent connection by state. Book The Out of Sync Child by Carol Stock-Kranowitz Sensory Resources KID Power – main sitet Kidzplay Occupational Therapy Center, Londonderry NH Henry OT Services, Inc List serve as support for parents

Find an SI therapist that completed training certified by USC / WPS – find by state,83247&_dad=portal&_schema=PORTAL

Pathways Awareness Foundation

Support Groups / Resourcing
MUMS, National Parent-to-Parent Network www.netnet-net/mums/
Parent Helping Parents (The Parent-Directed Family Resource Center)
Parents of Galactosemic Children
Parent to Parent of the United States
Technical Assistance Alliance for Parent Centers

Transport / Transportation
National patient Air Transport Hotline

Wish Organizations: Make a Wish Foundation High Hopes

Other DDR Developmental Delay Resources

National Health Information Center

Best Buddies International, Inc.
Best Buddies is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities (IDD).

Childhood Apraxia of Speech Association of North America (CASANA)

Easter Seals – National Office