Need help or resources?

Resources to help families
(compiled by and provided here with permission by www.NHAllice.org)

ADA American with Disabilities Act
www.pacer.org/pride/school.htm Questions and answers about the ADA and how it applies to students with disabilities in the school setting.

ADD / ADHD

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)
www.chadd.org

National Attention Deficit Disorder Association www.add.org

Assistive Technology

AbleData www.abledata.com database of commercially available rehabilitation products.

Enabling Devices http://enablingdevices.com/ Toys for Special Children and Products for
Independent Living.

Alliance for Technology Access (ATA) www.ataccess.org ATA centers can be found
across the country. Locate local centers.

AssistiveTech.net. www.assistivetech.net/search/index.cfm This site offers 4 ways to
search for assistive technology.

Family Center on Technology and Disability (FCTD) www.fctd@aed.org
Reviews and connections on assistive technology.

IBM Accessability Center http://www-03.ibm.com/able/
National Library Service for the Blind and Physically Handicapped www.loc.gov.nls

RESNA Rehabilitiation Engineering and Assistive Technology Society of North America www.resna.org
S Society of Augmentative and Alternative Communication www.ussaac.org

Autism Spectrum Disorders

www.autism-pdd.net
www.autism-pdd.net/answers.html
Center on Positive Behavioral Interventions and Supports www.pbis.org

Autism Society of America www.autism-society.org
Tuberous Sclerosis Alliance www.tsalliance.org

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

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

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

American Council of the Blind www.acb.org

American Foundation for the Blind (AFB) www.afb.org

Blind Children’s Center www.blindchildrenscenter.org
National Library Service for the Blind and Physically Handicapped www.loc.gov.nls
Recording for the Blind and Dyslexic www.rfbd.org

Brain Injury

Brain Injury Association of America www.biausa.org

Brain Tumor
American Brain Tumor Association www.abta.org
National Brain Tumor Foundation www.braintumor.org

Cancer (All types)

Cancer Information Service http://cancer.gov
Leukemia & Lymphoma Society www.leukemia-lymphoma.org

Craniofacial Conditions

Forward Face www.forwardface.org
FACES: The National Craniofacial Association www.faces-cranio.org

Deaf/ Blind

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

Deaf / Hard of Hearing
www.LSSproducts.com 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 http://clerccenter2.gallaudet.edu/KidsWorldDeafNet/e-doc/IDEA/index.html Website on
how IDEA applies to deaf and hard of hearing students.

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

American Society for Deaf Children www.deafchildren.org
American Speech-Language Hearing Association (ASHA) www.asha.org
National Association of the Deaf www.nad.org
Registry of Interpreters for the Deaf www.rid.org
Self Help for Hard of Hearing People, Inc (SHHH) www.hearingloss.org

Diabetes

National Diabetes Information Clearinghouse http://diabetes.niddk.nih.gov/about/index.htm

American Diabetes Association www.diabetes.org

Dietary / Special Diets
www.Healthyheartmarket.com Source for low sodium foods

Disability Related
www.nichcy.org/search.htm maintains a resource library of products in the TA & D
network
The Beach Center on Disability. Can connect you to the Parent to Parent program in your state. . www.beachcenter.org

Family Village http://www.familyvillage.wisc.edu/ “A global community of disability
related resources.

National Association of Protection and Advocacy Systems (NAPAS) www.napas.org

National Library Service for the Blind and Physically Handicapped www.loc.gov.nls
National Organization on Disability (NOD) www.nod.org
National Organizatoin on Fetal Alcohol Syndromes (NOFAS) www.nofas.org
TASH (formerly the Association for Persons with Severe Handicaps) www.tash.org
World Association of Persons with disabilities www.wapd.org

Diagnosis / Disease Specific
Brain Injury Association of America http://www.biausa.org/

Congenital Heart Information Network http://tchin.org/

Kidney Corner http://www.kidneycorner.org/kc/Home.html

United Mitochondrial Disease Foundation http://www.umdf.org

National Institutes of Health http://www.nih.gov/
National Institute of Allergy and Infectious Diseases http://www.niaid.nih.gov/Pages/default.aspx
National Kidney and Urologic Diseases Information Clearinghouse http://kidney.niddk.nih.gov/
National Institute of Diabetes and Digestive and Kidney Diseases http://www2.niddk.nih.gov/
National Heart, Lung, and Blood Institute http://www.nhlbi.nih.gov/

NORD (National Organization for Rare Disorders) http://www.rarediseases.org/

Foundation for Icthyosis and Related Skin Types www.scalyskin.org

www.rettsyndrome.org International Rett Syndrome Association

www.thearclink.org The ARC of the US is the national organization of and for people
with Mental Retardation and related disabilities and their families.

www.geneticalliance.org Disease Info. Search. For information on specific genetic
conditions.

www.Rarediseases.org NORD, the national Organization for Rare Diseases

The Office of Rare Disorders at eh National Institute of Health http://diseases.info.nih.gov/index.html

National Heart, Lung, and Blood Institute Information Center www.nhlbi.nih.gov

National Institute of Neurological Disorders & Stroke (NINDS) www.nidcd.nih.gov

American Liver Foundation www.liverfoundation.org
Angelman Syndrome foundation www.angelman.org
Asthma and Allergy Foundation of America www.aafa.org
Children’s Craniofacial Association www.ccakids.com
Chronic Fatigue and Immune Dysfunction Syndrome Association (CFIDS)
www.cfids.org
National Chronic fatigue Syndrome and Fibromyalgia Association (NCFSFA)
www.ncfsfa.org

Crohn’s & Colitis Foundation of America www.ccfa.org

Human Growth Foundation Foundation for those with disorders of growth and growth
hormones. www.hgfound.org

Huntington’s Disease Society of America www.hdsa.org

Hyrdocephalus Association www.hydroassoc.org

Immune Deficiency Foundation www.primaryimmune.org
International Dyslexia Association www.interdys.org
Little People of America – National Headquarters www.lpaonline.org
Lupas Foundation of America www.lupus.org
March of Dimes Birth Defects Foundation www.marchofdimes.com
National Ataxia Foundation www.ataxia.org
National Fragile X Foundation www.fragilex.org
National Gaucher Foundation www.gaucherdisease.org

National Limb Loss Information Center – Amputee Coalition of America www.amputee-coalition.org

National Lymphedema Network www.lymphnet.org
National Multiple Sclerosis Society www.nationalmssociety.org
National Neurofibromatosis Foundation www.nf.org
National Organization for Albinism and Hypopigmentation (NOAH) www.albinism.org
National Reye’s Syndrome Foundation www.reyessyndrome.org
Nattional Scoliosis Foundation www.scoliosis.org
National Sleep Foundation www.sleepfoundation.org
National Spinal Cord Injury Association www.spinalcord.org
National Stuttering Association www.westutter.org
National Tay-Sachs and Allied Diseases Association www.ntsad.org
Neurofibromatosis Inc www.nfinc.org
Osteogenesis Imperfecta Foundation www.oif.org
Prader-Willi Syndrome Association www.pwsausa.org
Scleroderma Foundation www.scleroderma.org
Spina Bifida Association of America www.sbaa.org
Stuttering Foundation www.stutteringhelp.org
Tourette Syndrome Association www.tsa-usa.org
Tuberous Sclerosis Alliance www.tsalliance.org
United Cerebral Palsy Association, Inc. www.ucp.org
United Leukosystrophy Foundation www.ulf.org
Vestibular Disorders Association, Inc. www.vestibular.org
Williams Syndrome Association, Inc www.williams-syndrome.org

Down Syndrome

National Down Syndrome Congress www.ndss.org
National Down Syndrome Society ndss.org

Early Education
www.netac.org/search/confinder.asp National Early Childhood Technical Assistance Center. Helps you find the early intervention contacts in your state

Head Start Bureau www.acf.dhhs.gov/programs/hsb/
Zero to Three (National Center for Infants, Toddlers and Families) http://www2.ed.gov/about/offices/list/osers/osep/index.html

Education / IEP & 504
The Office of Special Education Programs http://www2.ed.gov/about/offices/list/osers/osep/index.html

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

A CEC website with IDEA related information www.ideapractices.org

Family and Advocates Partnership for Education www.fape.org

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

Special Education in Plain Language – Introduction www.cesa7.k12.wi.us/sped/Parents/plinto.htm

National Center on Educational Outcomes
offers Online Accommodations Bibliography database. www.educaton.umn.edu/nceo/AccomStudies.htm

National Center for Education Statistics http://nces.ed.gov/fastfacts/

Search tool for information on schools (public and private) across the country. http://nces.ed.gov/ccd/search.asp

CCSSO (Council of Chief of State School
Officers) state specific information on schools, school districts, and standards, etc. www.ccsso.org/naepprofiles/introduction.cfm

Education Commission of the States (ECS) national grid
database tracking all the states No Child Left Behind data. http://nclb.ecs.org/nclb/

School Information Partnership. Public reports under NCLB www.schoolresults.org

ERIC Educational Resources Information Center. www.eric.ed.gov

Educator’s Reference Desk www.eduref.org/index.shtml Access lesson plans, links to
online education information, and archive responses.

The Regional Educational Laboratory Programs www.ed.gov/help/site/expsearch/labs.html

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 http://nces.ed.gov

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

NASBE (National Association of School Boards of Education) state level school health policy database. www.nasbe.org/HealthySchools/States/State_Policy.html

HEALTH Resource Center (National Clearinghouse on Postsecondary Education for Individuals with Disabilities www.health.gwu.edu

CADRE (Consortium for Appropriate Dispute Resolution in Special Education) www.directionservice.org

Closing the Gap (for information on computer technology in special education and rehabilitation www.closingthegap.com

Council for Exceptional Children (CEC)
http://www.cec.sped.org//AM/Template.cfm?Section=Home

National Association of Private Special Education Centers (NAPSEC) www.napsec.com
National Resource Center for Paraprofessionals in Education and Related Services www.nrcpara.org
Special Needs Advocate for Parents (SNAP) www.snapinfo.org

Epilepsy / Seizures

Epilepsy Foundation – National Office www.epilepsyfoundation.org

GI (Gastroenterology) / Digestive Health

National Digestive Disease Information Clearinghouse http://digestive.niddk.nih.gov/about/index.htm

Growth Disorders

MAGIC Foundation (Major Aspects of Growth Disorders in Children) www.magicfoundation.org

Heart / Cardiac

American Heart Association – National Center www.americanheart.org

National Heart, Lung, and Blood Institute Information Center www.nhlbi.nih.gov
Congenital Heart Information Network http://tchin.org/

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. http://dbapps.ama-assn.org/aps/amahg.htm

HRSA Health Resource and Services Administration www.ask.hrsa.gov/pc/ A nationwide network of community and migrant health centers and health care for the homeless.

Hospital Related Resources

National Association of Hospital Hospitality Houses www.nahhh.org/members/search.php Can help patients and their families find lodging and other supportive services when confronted with medical emergencies. www.helpinghomes@nahhh.org

Kidney / Urologic

National Kidney and Urologic Diseases Information Clearinghouse http://kidney_niddk.nih.gov/about/index.htm

American Association of Kidney Patients (AAKP) www.aakp.org

Learning Disabilities (other)

LDOnline (Website on learning disabilities) www.ldonline.org
Learning Disabilities Association of America (LDA) www.ldaamerica.org
National Center for Learning Disabilities (NCLD) www.getreadytoread.org
Nonverbal Learning Disorder (on the web) www.NI.Dontheweb.org
Nonverbal Learning Disorders Association www.nlda.org
Recording for the Blind and Dyslexic www.rfbd.org
Schwab Learning www.schwablearning.org

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.

Liver

Children’s Liver Alliance www.liverkids.org.au

Lung

National Heart, Lung, and Blood Institute Information Center www.nhlbi.nih.gov

American Lung Association www.lungusa.org

Asthma and Allergy Foundation of America www.aafa.org
Cystic Fibrosis Foundation www.cff.org

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. www.aimmm.org

Families USA (The Voice for Health Care Consumers) www.familiesusa.org
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. www.cms.hhs.gov/medicaid/statemap.asp
Health care insurance for uninsured children www.insurekidsnow.gov/index.htm

Mental Health / Emotional Health / Behavioral Health

Center for Mental Health Services locator service www.mentalhealth.org/databases/
National Institute on Mental Health (NIMH) www.nimh.nih.gov/publicat/index.cfm

Center for Mental Health in Schools, UCLA http://smhp.psych.ucla.edu “Search and Quick Find”
you can search the center’s resources .

Center for School Mental Health Assistance, University of Maryland http://csmha.umaryland.edu/ 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 www.pbis.org

Research and Training Center on Family Support and Children’s Mental Health www.rtc.pdx.edu

Anxiety Disorders Association of America www.adaa.org

Center for Effective Collaboration and Practice (CECP) http://cecp.air.org Improving Services for Children and Youth wit Emotional and Behavioral Problems)

Child and Adolescent Bipolar Foundation www.bpkids.org
National Mental Health Information Center www.mentalhealth.org

Depression and Bipolar Support Alliance www.dbsalliance.org

Federation of Families for Children’s Mental Health www.ffcmh.org

Internet Mental Health www.mentalhealth.com
Kristen Brooks Hope Center www.livewithdepression.org
Mental Help Net http://mentalhelp.net
National Alliance for the Mentally Ill (NAMI) www.nami.org
National Association for the Dually Diagnosed (NADD) (mental illness and mental
retardation) www.thenadd.org
National Center for PTSD (Post Traumatic Stress Disorder) www.ncpad.org
Obsessive Compulsive Foundation, Inc www.ocfoundation.org

Mitochondrial Disease Foundation http://umdf.org

Muscular Dystrophy
Muscular Systrophy Association (MDA) www.mdausa.org

National / Federal Information

www.access.gpo.gov/ United States printing office. Access published information on
a variety of subjects.

www.SSA.gov
Connect to your Parent Training Information Center. www.taalliance.org/Centers/index.htm

www.mentalhelp.net/selfhelp/ The American Self-Help Group Clearinghouse helps connect you to support groups and networks available.

www.nichcy.org National Dissemination Center for Children with Disabilities.

Healthfinder www.healthfinder.gov/ connects you with a ranges of health related resources. Spanish version www.healthfinder.gov/espanol/

Medline Plus http://medlineplus.gov 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. www.aamds.org

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

CHID Combined Health Information Database http://chid.nih.gov A bibliographic database produced by the health related agencies of the Federal government

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

Clinical Trials Database www.clinicaltrials.gov

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

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

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

Arthritis Foundation www.arthritis.org

NH State Specific
www.nh.gov

New Hampshire Family Voices www.nhfv.org

Family resource connection NH state library, Family and child development calendars. Statewide calendars on upcoming events and cources.www.nh.gov/nhsl/frc/tablecal.htm

New England Specific

Neuomuscular Diseases

National Muscular Dystrophy Association www.MDAUSA.org

Provider Information

National Resource Center for Family Centered Practice www.nrcfp.org

Recreation / Adaptive Sports

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

American Therapeutic Recreation Association www.atra-tr.org
Special Olympics International www.specialolympics.org

Disabled Sports USA www.dsusa.org

Rehabilitation / Therapies

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

American Occupational Therapy Association (AOTA) www.aota.org
American Physical Therapy Associatio (APTA) www.apta.org
American Therapeutic Recreation Association www.atra-tr.org

Respite

ARCH National Respite Network & Resource Center (respite locator service) www.archrespite.org

Sensory Integration Disorders
www.SInetwork.org directory of DSI parent connection by state.

www.out-of-sync-child.com Book The Out of Sync Child by Carol Stock-Kranowitz

www.sensoryresources.com Sensory Resources

www.kid-power.com KID Power – main sitet

www.kidzplay.org Kidzplay Occupational Therapy Center, Londonderry NH

www.ateachabout.com Henry OT Services, Inc

www.kid-power.com/sid.html List serve as support for parents

Find an SI therapist that completed training certified by USC / WPS – find by state
http://portal.wpspublish.com/portal/page?_pageid=53,83247&_dad=portal&_schema=PORTAL

Pathways Awareness Foundation www.pathwaysawareness.org

Support Groups / Resourcing
MUMS, National Parent-to-Parent Network www.netnet-net/mums/
Parent Helping Parents (The Parent-Directed Family Resource Center) www.php.com
Parents of Galactosemic Children www.galactosemia.org
Parent to Parent of the United States www.p2pusa.org/index.html
Technical Assistance Alliance for Parent Centers www.taalliance.org

Transport / Transportation
National patient Air Transport Hotline www.patienttravel.org

Wish Organizations:
www.wish.org Make a Wish Foundation

www.highhopesnh.org High Hopes

www.dreamfactoryinc.com

Other

www.carepoints.org

www.growthhouse.org

www.devdelay.org DDR Developmental Delay Resources

National Health Information Center www.health.gov/nhic

Best Buddies International, Inc. www.bestbuddies.org
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) www.apraxia-kids.org

Easter Seals – National Office www.easter-seals.org