American Resource Guide -

Pervasive Developmental Disorders

There are five distinct pervasive developmental disorders, involving communication skills, motor skills, and social skills. They are: Asperger’s syndrome, autism, childhood disintegrative disorder (CDD), pervasive developmental disorder, and Rett Syndrome. These disorders range in severity.

Autism Asperger Resource Center
The Autism Asperger Resource Center is dedicated to enhancing the quality of life of individuals with autism, Asperger’s syndrome, and related disabilities. The resource center provides information, publications, and workshops, and offers conferences.
Address:
The Autism Asperger Resource Center
3901 Rainbow Boulevard, Suite 2031 DDC
Kansas City, KS 66160
Voice: 913-588-5988
Fax: 913-588-5727
E-mail: THEAARC@msn.com
Website: www.autismasperger.org
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Autism Society of America
Autism Society of America is dedicated to promoting lifelong access and opportunity for all individuals within the autism spectrum through research, advocacy, information, publications, and technical support. Materials are available in Spanish. A list of community events and chapters can be found on the society’s website.
Address:
Autism Society of America
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814-3067
Voice: 800-328-8476
E-mail: info@autism-society.org
Website: www.autism-society.org

International Rett Syndrome Association
The International Rett Syndrome Association is dedicated to supporting and encouraging research to determine the cause, treatment, and cure for Rett syndrome. The association provides support services, fact sheets, and brochures. Materials are available in (but not limited to) Chinese, Greek, Italian, and Spanish. A list of community events can be found on their website.
Address:
International Rett Syndrome Association
9121 Piscataway Road
Clinton, MD 20735
Voice: 800-818-7388
Fax: 301-856-3336
E-mail: irsa@rettsyndrome.org
Website: www.rettsyndrome.org

The Action Starts Here (TASH)
The Action Starts Here is dedicated to the inclusion and full participation of individuals with severe disabilities. The organization provides publications, fact sheets, and information on issues of critical importance to the lives of people with disabilities. A list of community events and chapters can be found on the TASH website.
Address:
The Action Starts Here (TASH)
29 W. Susquehanna Avenue, Suite 210
Baltimore, MD 21204
Voice: 410-828-8274
Fax: 410-828-6706

Physical/Mobility Disability

Physical/mobility disability is defined as any disorder, condition, or anatomical loss affecting one or more of the body systems. Physical/mobility disabilities include, but are not limited to, loss of limb(s), spinal cord injuries, muscular dystrophy, cerebral palsy, spina bifida, and multiple sclerosis. These disabilities can range in severity from mild to severe.

American Occupational Therapy Association (AOTA)
The American Occupational Therapy Association is dedicated to the quality and use of occupational therapy through advocacy, education, and research on behalf of its members and the public. AOTA provides referral services, fact sheets, and brochures.
Address:
American Occupational Therapy Association (AOTA)
4720 Montgomery Lane
P.O. Box 31220
Bethesda, MD 20824-1220
Voice: 301-652-2682
Fax: 301-652-7711
TTY: 800-377-8555
Website: www.aota.org

American Physical Therapy Association (APTA)
The American Physical Therapy Association is dedicated to promoting the profession of physical therapy and to furthering its role in the prevention, diagnosis, and treatment of movement dysfunctions and functional abilities.
Address:
American Physical Therapy Association
1111 North Fairfax Street
Alexandria, VA 22314-1488
Voice: 800-999-2782
Fax: 703-684-7343
TTY: 703 683-6748
E-mail: practice@apta.org
Website: www.apta.org

Amputee Coalition of America
The Amputee Coalition of America represents amputees, their families and healthcare providers and runs theNational Limb Loss Information Center for people who have experienced amputation or have limb differences. Services include a national hotline, website, health care provider education, peer training, and publications. Materials are available in Spanish.
Address:
Amputee Coalition of America
900 East Hill Avenue, Suite 285
Knoxville, TN 37915
Voice: 888-267-5669
Fax: 865-525-7917
TTY: 865-525-4512
E-mail: infor@amputee-coalition.org
Website: www.amputee-coalition.org

Brain Injury Association of America
The Brain Injury Association of America is dedicated to research and better treatment options for individuals with brain tumors. The association gives treatment information and support and publishes fact sheets and other materials relating to brain injuries.
Address:
Brain Injury Association of America
22 Battery Street, Suite 612
San Francisco, CA 94111-5520
Voice: 800-934-2873
E-mail: familyhelpline@biausa.org
Website: www.biausa.org

Children’s Craniofacial Association
The Children’s Craniofacial Association addresses the medical, psychosocial, emotional, and educational concerns relating to craniofacial conditions. The association provides support, information fact sheets, newsletters, and brochures.
Address:
Children’s Craniofacial Association
13140 Coit Road, Suite 307
Dallas, TX 75240
Voice: 800-535-3643
E-mail: contactcca@ccakids.com
Website: www.ccakids.com

Christopher and Dana Reeve Paralysis Resource Center
The Christopher and Dana Reeve Paralysis Resource Center provides a comprehensive, national source of information for people living with paralysis, and their caregivers, to promote health, foster involvement in the community, and enhance quality of life. The Center houses a comprehensive lending library, and specialists will answer questions on issues ranging from treatment to insurance. Materials are available in Spanish.
Address:
Christopher and Dana Reeve Paralysis Resource Center
Short Hills Plaza
636 Morris Turnpike, Suite #3A
Short Hills, NJ 07078
Voice: 800-539-7309
E-mail: info@paralysis.org
Website: www.paralysis.org

Easter Seals
Easter Seals is dedicated to providing physical rehabilitation and job training for people with disabilities. The organization also makes available fact sheets, publications, and conferences. Materials are available in Spanish. A list of community events and chapters can be found on their website.
Address:
Easter Seals
230 West Monroe Street, Suite 1800
Chicago, IL 60606
Voice: 800-221-6827
Fax: 312-726-1494
TTY: 312-726-4258
E-mail: info@easter-seals.org
Website: www.easter-seals.org

Foundation for Spinal Cord Injury Prevention
The Foundation for Spinal Cord Injury Prevention is dedicated to the prevention, care, and cure of spinal cord injuries through public awareness, funding, and research. The organization provides resources, fact sheets, and publications about spinal cord injuries. Materials are available in Spanish.
Address:
Foundation for Spinal Cord Injury Prevention
11230 White Lake Road
Fenton, Michigan 48430
Voice: 800-342-0330
Fax: 810-714-0354
E-mail: info@fscip.org
Website: www.fscip.org

International Organization of Multiple Sclerosis Nurses
The International Organization of Multiple Sclerosis Nurses is dedicated to supporting multiple sclerosis research. The organization provides education, publications, and a speaker’s bureau. Materials are available in French, Italian, and Spanish.
Address:
International Organization of Multiple Sclerosis Nurses
P.O. Box 450
Teaneck, NJ 07666
Voice: 201-837-9241
Fax: 201-837-0604
E-mail: infor@iomsn.org
Website: www.iomsn.org

National Center on Physical Activity and Disability (NCPAD)
The National Center on Physical Activity and Disability is dedicated to facilitating physical activity for individuals with disabilities. NCPAD provides fact sheets on activities, games, recreational pursuits, and sports that have been adapted for individuals with disabilities. Materials are available in Spanish.
Address:
National Center on Physical Activity and Disability
501 North Morton St, Suite 109
Bloomington, IN 47404
Voice: 800-900-8086
Fax: 812-856-4480
TTY: 812-856-4421
E-mail: ncpad@uic.edu
Website: www.ncpad.org

National Multiple Sclerosis Society
The National Multiple Sclerosis Society is dedicated to a cure for multiple sclerosis through research, education, and advocacy. The society provides publications and fact sheets. Materials are available in Spanish. A list of community events and chapters can be found on their website.
Address:
National Multiple Sclerosis Society
733 Third Avenue
New York, NY 10017
Voice: 800-344-4867
E-mail: info@nmss.org
Website: www.nmss.org

National Organization for Albinism and Hypopigmentation (NOAH)
National Organization for Albinism and Hypopigmentation offers information and support to people with albinism, their families and the professionals who work with them. The organization provides information bulletins on topics specific to living with albinism.
Address:
National Organization for Albinism and Hypopigmentation
P.O. Box 959
East Hampstead, NH 03826-0959
Voice: 800-473-2310
E-mail: webmaster@albinism.org
Website: www.albinism.org

Spina Bifida Association of America
The Spina Bifida Association of America is dedicated to enhancing the lives of those with spina bifida through advocacy and research. Fact sheets, brochures, newsletters, and publications are available. Materials are available in Spanish. A list of community events and chapters can be found on their website.
Address:
Spina Bifida Association of America
4590 MacArthur Boulevard, NW, Suite 250 Washington, DC 20007-4226
Voice: 800-621-3141
E-mail: sbaa@sbaa.org
Website: www.sbaa.org

United Cerebral Palsy (UCP)
United Cerebral Palsy is dedicated to the independence, productivity and inclusion of people with disabilities. Information, brochures, pamphlets, fact sheets, training, and conferences are available. Materials are available in Spanish. A list of community events and chapters can be found on the UCP website.
Address:
United Cerebral Palsy
1660 L. Street NW, Suite 700
Washington DC 20036
Voice: 800 872-5827
Fax: 202-776-0414
TTY: 202-973-7197
E-mail: national@ucp.org
Website: www.ucpa.org

Psychiatric and Emotional Disorders

Psychiatric disorders: Among the most common are depression and eating disorders. Psychiatric disorders can be temporary, episodic, or long-lasting; symptoms range from mild to severe.

Emotional/Behavioral Disorders (EBD): These are defined as an inability to learn that cannot be explained by intellectual, sensory, or health factors; an inability to build or maintain satisfactory interpersonal relationships with peers and teachers; inappropriate types of behavior or feelings under normal circumstances with physical symptoms or fears in association with personal or school problems.

Anxiety Disorders Association of America
The Anxiety Disorders Association of America is dedicated to the early diagnosis, treatment, and cure of anxiety disorders. The association provides information, fact sheets, and conferences. The website contains a section on women with anxiety disorders and a geographical list of mental health care providers.
Address:
Anxiety Disorders Association of America
8730 Georgia Avenue, Suite 600
Silver Spring, MD 20910
Voice: 240-485-1001
Fax: 240-485-1035
E-mail: AnxDis@adaa.org
Website: www.adaa.org

Child & Adolescent Bipolar Foundation
The Child & Adolescent Bipolar Foundation is dedicated to pediatric bipolar disorder and its cure. The foundation connects families with resources and support, educates families, professionals, and the public about pediatric bipolar disorder. Fact sheets, brochures, and publications are available. Materials are available in Spanish.
Address:
Child & Adolescent Bipolar Foundation
1000 Skokie Boulevard, Suite 425
Wilmette, IL 60091
Voice: 847-256-8525
Fax: 847-920-9498
E-mail: cabf@bpkids.org
Website: www.bpkids.org

Depression and Bipolar Support Alliance
Depression and Bipolar Support Alliance is dedicated to the improving the lives of individuals with mood disorders. The alliance provides information, fact sheets, and publications. Materials are available in Spanish. A list of chapters, support groups, and mental health care providers can be found on the Alliance’s website.
Address:
Depression and Bipolar Support Alliance
730 N. Franklin Street, Suite 501
Chicago, IL 60610-7224
Voice: 800-826-3632
Fax: 312-642-7243
E-mail: questions@dbsalliance.org
Website: www.dbsalliance.org

Federation of Families for Children’s Mental Health
is dedicated to helping children with mental health needs and their families to achieve a better quality of life. The federation provides training, publications, and information. Materials are available in Spanish. A list of community events and chapters can be found on their website.
Address:
Federation of Families for Children’s Mental Health
1101 King Street, Suite 420
Alexandria, VA 22314
Voice: 703-684-7710
Fax: 703-836-1040
E-mail: ffcmh@ffcmh.com
Website: www.ffcmh.org

National Alliance for the Mentally Ill (NAMI)
The National Alliance for the Mentally Ill is dedicated to improving the quality of life of individuals with mental illness. The alliance provides training, fact sheets, brochures, and publications. Materials are available in Spanish. A list of chapters can be found on the NAMI website.
Address:
National Alliance for the Mentally Ill (NAMI)
Colonial Place Three
2107 Wilson Blvd., Suite 300
Arlington, VA 22201-3042
Voice: 800-956-6256
Fax: 703 524-9094
TTY: 703-516-7227
Website: www.nami.org

National Eating Disorders Association
National Eating Disorders Association is dedicated to quality treatment for individuals with eating disorders. The association provides publications, fact sheets, and a referral service. Materials are available in Spanish.
Address:
National Eating Disorders Association
603 Stewart Street, Suite 803
Seattle, WA 98101
Voice: 800-931-2237
E-mail: info@NationalEatingDisorders.org
Website: www.nationaleatingdisorders.org

National Mental Health Association (NMHA)
National Mental Health Association works to improve the mental health of individuals with mental disorders through advocacy, education, research, and service. The association provides resources, publications, and fact sheets. Materials are available in Spanish. A list of community events, chapters, and mental health care providers can be found on the NMHA website.
Address:
National Mental Health Association
2001 N. Beauregard Street, 12th Floor
Alexandria, VA 22311
Voice: 800-969-6642
Fax: 703-684-5968
TTY: 800-433-5959
Website: www.nmha.org

Nonverbal Learning Disorders Association
The Nonverbal Learning Disorders Association is dedicated to education, research, and advocacy for individuals who have nonverbal learning disorders. The association provides fact sheets, brochures, and publications.
Address:
Nonverbal Learning Disorders Association
2446 Albany Avenue
West Hartford, CT 06117
Voice: 860-570-0217
E-mail: NLDA@nlda.org
Website: www.nlda.org

Obsessive Compulsive Foundation Inc. (OCD Foundation, Inc.)
The Obsessive Compulsive Foundation is dedicated to the education of public and professional communities about OCD and related disorders. The foundation provides fact sheets, newsletters, articles, and books. Materials are available in Spanish. A list of mental health care providers can be found on the foundation’s website.
Address:
Obsessive Compulsive Foundation, Inc.
676 State Street
New Haven, CT 06511
Voice: 203-401-2070
Fax: 203-401-2076
E-mail: info@ocfoundation.org

Sensory Disabilities

Hearing Impaired/Deaf: Hearing impairment is a general term used to describe hearing loss. Individuals with hearing loss may be classified as those who are hard of hearing or deaf. There are several categories of hearing loss ranging in severity from mild to profound.

Hard of Hearing: Hearing loss does not preclude understanding spoken language with use of hearing device(s).

Deaf: This condition is defined as having little or no functional hearing; unable to hear spoken language even with hearing aids.

Alexander Graham Bell Association for the Deaf and Hard of Hearing
The Alexander Graham Bell Association for the Deaf and Hard of Hearing is dedicated to serving individuals who are deaf or hard of hearing. The association provides publications, outreach, and training and offers leadership enrichment programs for teens and college students who are deaf. A list of chapters can be found on their website.
Address:
Alexander Graham Bell Association for the Deaf and Hard of Hearing
3417 Volta Place, NW
Washington, DC 20007
Voice: 202-337-5220
Fax: 202-337-8314
TTY: 202-337-5221
E-mail: info@agbell.org
Website: www.agbell.org

American Society for Deaf Children (ASDC)
The American Society for Deaf Children is dedicated to providing support, encouragement, and information to families raising children who are deaf or hard of hearing. The society provides information, publications, and fact sheets. Materials are available in Chinese, Dutch, French, German, Greek, Italian, Japanese, Portuguese, Spanish, and Russian.
Address:
American Society for Deaf Children
P.O. Box 3355
Gettysburg, PA 17325
Voice: 800-942-2732
Fax: 717-334-8805
TTY: 717-334-8805
E-mail: ASDI@aol.com
Website: www.deafchildren.org

American Speech-Language Hearing Association (ASHA)
The American Speech-Language Hearing Association is dedicated to serving people with communication disabilities through advocacy and education. The organization provides fact sheets, publications, conferences, and special events. Materials are available in Spanish. A list of chapters, audiologists and speechlanguage pathologists can be found on the ASHA website.
Address:
American Speech-Language
Hearing Association
10801 Rockville Pike
Rockville, MD 20852
Voice: 800-498-2071
TTY: 800-897-5700
E-mail: actioncenter@asha.org
Website: www.asha.org

National Association of the Deaf
The National Association of the Deaf is dedicated to serving the deaf and hard of hearing community. The association provides fact sheets, publications, and conferences. Materials are available in Spanish. A list of community events and chapters can be found on their website.
Address:
National Association of the Deaf
814 Thayer Avenue, Suite 250
Silver Spring, MD 20910
Voice: 301-587-1788
Fax: 301-587-1791
TTY: 301-587-1789
E-mail: nadinfo@nad.org
Website: www.nad.org

Self Help for Hard of Hearing People (SHHH)
Self Help for Hard of Hearing People is dedicated to people with hearing loss through advocacy and support. The organization provides information, fact sheets, brochures, and various publications. A list of community events and chapters can be found on their website.
Address:
Self Help for Hard of Hearing People
7910 Woodmont Avenue, Suite 1200
Bethesda, MD 20814
Voice: 301-657-2248
Fax: 301-913-9413
TTY: 301-657-2249
E-mail: national@shhh.org

Visual Impairment

Visual Impairment/Blind: A visual impairment is any impairment in vision that, even with correction, adversely affects an individual’s performance. There are several categories of visual impairment ranging in severity from low vision to legal blindness. A visual impairment can affect one or both eyes.

Low Vision applies to all individuals who use a combination of vision and other senses to learn. Many require adaptations in lighting, print size and sometimes use Braille.

Legally Blind is defined as less than 20/200 vision in the better eye or a limited field of vision

American Council of the Blind
The American Council of the Blind is dedicated to elevating the social, economic and cultural levels of individuals who are blind. The council provides awareness training, fact sheets, publications, resources, and legal assistance. A list of community events and chapters can be found on their website.
Address:
American Council of the Blind
1155 15th Street NW, Suite 1004
Washington, DC 20005
Voice: 800- 424-8666
Fax: 202-467-5085
E-mail: Info@acb.org
Website: www.acb.org

American Foundation for the Blind
American Foundation for the Blind addresses critical issues that face the blind and visually impaired population. The foundation provides training, books, fact sheets, and publications. A list of chapters can be found on their website.
Address:
American Foundation for the Blind
11 Penn Plaza, Suite 300
New York, NY 10001
Voice: 800-232-5463
E-mail: afbinfo@afb.org
Website: www.afb.org

Blind Children’s Center
Blind Children’s Center is dedicated to children with visual impairments from birth to school-age through support services, education, and research. The center provides information, educational materials, publications, and resources. Materials are available in Spanish.
Address: Blind Children’s Center
4120 Marathon Street
Los Angeles, CA 90029-0159
Voice: 800-222-3566
E-mail: info@blindchildrenscenter.org
Website: www.blindchildrenscenter.org

Foundation Fighting Blindness
Foundation Fighting Blindness is dedicated to preventions, treatments, and cures for people affected by retinitis pigmentosa, macular degeneration, Usher Syndrome, and the entire spectrum of retinal degenerative diseases. The foundation provides information, presentation materials, articles, and publications. A list of chapters can be found on their website.
Address:
Foundation Fighting Blindness
11435 Cronhill Drive
Owings Mills, MD 21117-2220
Voice: 800-683-5555
TTY: 800-683-5551
Website: www.blindness.org

National Federation of the Blind
National Federation of the Blind is dedicated to the acceptance and understanding of individuals who are blind. The federation provides public education about blindness, information and referral services, fact sheets, and publications. Materials are available in Spanish. A list of chapters can be found on their website.
Address:
National Federation of the Blind
1800 Johnson Street, Baltimore, MD 21230
Voice: 410-659-9314
Fax: 410-685-5653
E-mail: webmaster@nfb.org

 

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