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May Institute

National Disabilities Organizations & Information Groups

Below is an alphabetical listing of Disabilities Organizations and Information Groups that are an invaluable source of information.

To search for a specific resource listing in your state, return to the state pages.

Search Tip: So you don't have to scroll through pages of addresses not in your area, do this: Press Control+F, then type in your city, state, zip code, or other search criteria. Try zip codes for other nearby towns.

Adaptive Baseball / Little League Challenger Div.
Samuel D. Ranck
539 US Route 15 Hwy
PO Box 3485
Williamsport, PA 17701-0485
(570) 326-1921 Ext. 254; (570) 326-1074 (fax)
Email: sranck | at | LittleLeague.org
Web: http://www.littleleague.org
Co-ed program for youth ages 5-21; Little League Baseball's adaptive division strives to accommodate the needs of every individual child to promote interpersonal/physical development and fun. A Federal Non-Profit, partnering with national medical communities for a safe program.

African-American Juvenile Justice Project
Sherri Jefferson, Esq.
Post Office Box 2041
Jonesboro, GA 30236
(770) 374-9591
Email: info | at | aajjp.org
Web: http://www.aajjp.org
Legal advocacy for children. Provide services in child welfare, education, health, housing and juvenile justice/delinquency.

Alexander Graham Bell Association for the Deaf and Hard of Hearing
(202) 337-5220; (202) 337-5221 (TTY)
Email: info | at | agbell.org
Web: www.agbell.org

Alliance for Technology Access
(800) 455-7970; (415) 455-4575; (415) 455-0491 (TTY)
Email: atainfo | at | ataccess.org
Web: www.ataccess.org

American Brain Tumor Association
(847) 827-9910; (800) 886-2282 (Patient Services)
Email: info | at | abta.org
Web: www.abta.org/

American Council of the Blind
(800) 424-8666; (202) 467-5081
Email: ncrabb | at | erols.com
Web: www.acb.org

American Council on Rural Special Education (ACRES)
(785) 532-2737
Email: acres | at | ksu.edu
Web: http://www.acres-sped.org/

American Diabetes Association
Government Affairs and Advocacy Division
1701 N. Beauregard Street
Alexandria, VA 22311
(703) 549-1500 or (800) DIABETES
Web: www.diabetes.org
The American Diabetes Association is committed to ending discrimination against people with diabetes through its legal advocacy program.

American Foundation for the Blind (AFB)
(800) 232-5463; (212) 502-7662 (TTY)
Publications available in Spanish
Email: afbinfo | at | afb.net
Web: www.afb.org

American Occupational Therapy Association (AOTA)
(301) 652-2682 (Voice)
Web: www.aota.org

American Physical Therapy Association (APTA)
(800) 999-2782; (703) 684-2782; (703) 683-6748 (TTY)
Email: practice | at | apta.org
Web: www.apta.org

American Society for Deaf Children
(800) 942-2732; (717) 334-7922 (V/TTY)
Email: ASDC1 | at | aol.com
Web: www.deafchildren.org

American Speech-Language-Hearing Association (ASHA)
(800) 498-2071 (V/TTY); (301) 571-0457 (TTY)
Publications available in Spanish; Spanish speaker on staff
Email: actioncenter | at | asha.org
Web: www.asha.org

American Therapeutic Recreation Association
(703) 683-9420
Email: atra | at | atra-tr.org
Web: www.atra-tr.org

Angelman Syndrome Foundation
(800) 432-6435; (630) 734-9267
Email: asf | at | adminsys.com
Web: www.angelman.org

Anxiety Disorders Association of America
(301) 231-9350
Email: AnxDis | at | adaa.org
Web: www.adaa.org

Aplastic Anemia & MDS International Foundation
(800) 747-2820; (410) 867-0242
Email: aamdsoffice | at | aol.com
Web: www.aamds.org

The Arc (formerly the Association for Retarded Citizens of the U.S.)
(301) 565-3842
Email: Info | at | thearc.org
Web: www.thearc.org

Asperger Syndrome Education Network (ASPEN®)
9 Aspen Circle
Edison, NJ 08820
(732) 321-0880
Email: info | at | aspennj.org
Website www.aspennj.org

Asthma and Allergy Foundation of America
(800) 727-8462; (202) 466-7643
Email: info | at | aafa.org
Web: www.aafa.org/

Attention Deficit Disorders Associations - Southern Region
(281) 897-0982
Email: oflanigan | at | adda-sr.org
Web: http://www.adda-sr.org/

Attention Deficit Disorder Resources
Cynthia Hammer
223 Tacoma Av So
Tacoma, WA 98402
(253) 759 5085; (253) 572 3700 (fax)
Email: office | at | addresources.org
Web: http://www.addresources.org
Quality ADHD information, resources and support provided by a national non-profit organization

Autism Society of America
(800) 328-8476; (301) 657-0881
Publications available in Spanish
Web: www.autism-society.org

The Balanced Mind
Nanci Schiman
820 Davis St., Ste. 520
Evanston, IL 60201
(847) 492-8519; (847) 492-8520 (fax)
Email: nschiman | at | thebalancedmind.org
Web: http://www.thebalancedmind.org/
The Balanced Mind Foundation is a web-based non-profit organization guiding families raising children with mood disorders to the answers, support and stability they seek.

Brain Injury Association of America
8201 Greensboro Drive, Suite 611
McLean, VA. 22102-3816
(800) 444-6443; (703) 761-0750
Email: info | at | biausa.org
Web: http://www.biausa.org
Visit the web page for contacts to state-based organizations; Publications available in Spanish.

Center for Mental Health Services, Knowledge Exchange Network
Publications available in Spanish
(800) 789-2647; (301) 443-9006 (TTY)
Email: ken | at | mentalhealth.org
Web: www.mentalhealth.org

Childhood Apraxia of Speech Association
(412) 343-7102
Email: helpdesk | at | apraxia-kids.org
Web: http://www.apraxia-kids.org

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)
(800) 233-4050 (To request information packet)
Email: national | at | chadd.org
Web: www.chadd.org

Children's Craniofacial Association
(800) 535-3643; (972) 994-9902
Email: contactcca | at | ccakids.com
Web: www.ccakids.com

Children's Liver Alliance
(718) 987-6200
Email: Livers4Kids | at | earthlink.net

Chronic Fatigue & Immune Dysfunction Syndrome Association
(800) 442-3437; (704) 365-9755
Email: info | at | cfids.org
Web: www.cfids.org

Cleft Advocate
(702) 228-8662; (702) 341-5351 (fax)
Email: debbie | at | cleftadvocate.org
Web: http://www.cleftadvocate.org
Cleft Advocate provides educational and networking opportunities for cleft lip/palate and other craniofacial patients and their families, including assistance with insurance issues.

Council for Exceptional Children (CEC)
(703) 620-3660; (703) 264-9446 (TTY)
Email: cec | at | cec.sped.org
Web: www.cec.sped.org/

Craniofacial Foundation of America
(800) 418-3223; (423) 778-9192
Email: farmertm | at | erlanger.org

Cued language Network of America (CLNA)
P.O. Box 772
Heber City, Utah 84032
(866) 446-3855
Web: http://www.cuedlanguage.org

Disability and Business Technical Assistance Centers (DBTACs)
(800) 949-4232
Web: http://www.adata.org/dbtac.html

DisAbility.gov
Email: webmaster | at | disability.gov
Web: http://www.disability.gov/

Easter Seals-National Office
(800) 221-6827; (312) 726-6200; (312) 726-4258 (TTY)
Email: info | at | easter-seals.org
Web: www.easter-seals.org

EMPOWER Colorado
2200 S. Jasmine Street
Denver, CO 80222
(866) 213-4631
Email: info | at | empowercolorado.com
Web: www.empowercolorado.com
EMPOWER Colorado (Educational Movement: Parents Offering Wisdom Encouragement & Resources) Offers support, education and advocacy for families of children and adolescents with mental health needs.

Epilepsy Foundation-National Office
(800) 332-1000; (301) 459-3700
Publications available in Spanish; Spanish speaker on staff
Email: postmaster | at | efa.org
Web: www.efa.org

FACES: The National Craniofacial Association
(800) 332-2372; (423) 266-1632
Email: faces | at | faces-cranio.org
Web: www.faces-cranio.org

Families for Early Autism Treatment
P.O. Box 255722
Sacramento, CA 95865-5722
(916) 843-1536
Email:webmaster | at | feat.org
Web: www.feat.org

Families For Hands and Voices
P.O. Box 371926
Denver, CO 80237
(303) 300-9763; (866) 422-0422
Email: parentadvocate | at | handsandvoices.org
Web: http://www.handsandvoices.org

Family Village (community of disability-related resources)
Web: www.familyvillage.wisc.edu/

Family Voices (national coalition for children with special health care needs)
(888) 835-5669; (505) 867-2368
Email: kidshealth | at | familyvoices.org
Web:www.familyvoices.org

Father's Network
(425) 747-4004, ext. 218
Email: jmay | at | fathersnetwork.org
Web: www.fathersnetwork.org

Federation of Families for Children's Mental Health
(703) 684-7710
Publications available in Spanish
Email: ffcmh | at | ffcmh.com
Web: www.ffcmh.org

First Group America
Dona M. Beauchea
600 Vine Street Suite 1400
Cincinnati, OH 45202
(513) 419-3365
Email: dona.beauchea | at | firstgroup.com
Web: http://FirstGroupAmerica.com
We provide transportation to children and adults with special needs throughout the United States and Canada using school buses, para transit buses, transit and Greyhound.

Foundation for Ichthyosis & Related Skin Types
Web: http://www.scalyskin.org/

The Genetic Alliance (formerly the Alliance of Genetic Support Groups)
(800) 336-4363; (202) 966-5557
Email: info | at | geneticalliance.org
Web: www.geneticalliance.org

Hands & Voices
Janet DesGeorges
PO Box 3093
Boulder, CO 80307
(303) 492-6283; (303) 492-3274 (fax)
Email: janet | at | handsandvoices.org
Web: http://www.handsandvoices.org
Hands & Voices is a parent driven advocacy and support organization for families who have children who are deaf and hard of hearing.

Hydrocephalus Association
(415) 732-7040
Email: hydroassoc | at | aol.com
Web: www.hydroassoc.org

ICAA
Emily Malabey, President
PO Box 781
St. Peters, MO 63376
(314) 445-8788
Email: info | at | icaaonline.org
Web: http://www.icaaonline.org
Advocacy services, Consultations for schools, businesses, tutoring, therapy assistance. Inclusion, accessibility support.The ICAA is dedicated to advancing futures.

Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
(713) 520-0232
Email: ilru | at | ilru.org
Web: www.ilru.org

Institute on Independent Living
Email: admin | at | independentliving.org
Web: http://www.independentliving.org/

International Dyslexia Association (formerly the Orton Dyslexia Society)
(800) 222-3123; (410) 296-0232
Email: info | at | interdys.org
Web: www.interdys.org

International Fibrodysplaisa Ossificans Progressiva Association (IFOPA)
P.O.Box 196217
Winter Springs, FL 32719-6217
Note: This organization is based in FL but has members around the world.
(407) 365-4194
Email: together | at | ifopa.org
Web: http://www.ifopa.org/

International Resource Center for Down Syndrome
(216) 621-5858; (800) 899-3039 (toll-free in OH only)
Email: hf854 | at | cleveland.freenet.edu

International Rett Syndrome Association
(800) 818-7388; (301) 856-3334
Email: irsa | at | rettsyndrome.org
Web: www.rettsyndrome.org

IsoDicentric 15, Advovacy, Exchange & Support
18 Kings Road
Canton, MA 02021
(617) 686-8405
Web: http://www.IDIC15.org
Isodicentric 15, abbreviated idic(15), is a chromosome abnormality which a child is born with extra genetic material; Affects - developmental disabilities, including cognitive disabilities, autism, and seizure disorders

Jonah & The Whale Foundation
Mannie Taimuty-Loomis
P.O. Box 981
Mars, PA 16046
(877) 49-JONAH; (877) 495-6624; (724) 772-4998 (fax)
Email: Info | at | JTWF.org
Web: http://www.JTWF.org
The foundation provides families with Parent Binders and resource materials to encourage organization of medical and educational information for more responsible communication between parties involved.

KPS4Parents, Inc.
Anne M. Zachry
2390-C Las Posas Rd #482
Camarillo, CA 93010
(877) 536-5940
Email: info | at | kps4parents.org
Web: http://kps4parents.org
We are a non-profit lay advocacy organization representing students throughout the US, mostly in CA. We also provide paralegal support to attorneys representing students with disabilities.

Learning Disabilities Association of America (LDA)
(888) 300-6710; (412) 341-1515; (412) 341-8077
Publications available in Spanish
Email: vldanatl | at | usaor.ne
Web: www.ldanatl.org

Leukemia & Lymphoma Society (formerly Leukemia Society of America)
(800) 955-4LSA; (212) 573-8484
Email: infocenter | at | leukemia-lymphoma.org
Web: www.leukemia-lymphoma.org

Little People of America-National Headquarters
(888) LPA-2001
Spanish speaker on staff
Email: LPADataBase | at | juno.com
Web: www.lpaonline.org

March of Dimes Birth Defects Foundation
(914) 428-7100; (888) 663-4637
Publications available in Spanish
Email: resourcecenter | at | modimes.org
Web: http://www.marchofdimes.org

Muscular Dystrophy Association (MDA)
(800) 572-1717; (520) 529-2000
Publications available in Spanish
Email: mda | at | mdausa.org
Web: www.mdausa.org

National Alliance for the Mentally Ill (NAMI)
(800) 950-6264; (703) 524-7600; (703) 516-7991 (TTY)
Publications available in Spanish
Email: namiofc | at | aol.com
Web: www.nami.org

National Association of the Deaf
(301) 587-1788; (301) 587-1789 (TTY)
Email: nadinfo | at | nad.org
Web: www.nad.org

National Association of Private Schools for Exceptional Children (NAPSEC)
(202) 408-3338
Email: napsec | at | aol.com
Web: www.napsec.com

National Ataxia Foundation
(612) 553-0020
Email: naf | at | mr.net
Web: www.ataxia.org

National Attention Deficit Disorder Association
Email: mail | at | add.org
Web: www.add.org

National Brain Tumor Foundation
(800) 934-2873; (510) 839-9777
Email: nbtf | at | braintumor.org
Web: www.braintumor.org

National Center on Low-Incidence Disabilities at UNC
Sheryl Muir
Campus Box 146, McKee Hall
University of Northern Colorado
Greeley, CO 80639
(800) 395-2693; (970) 351-1061 (fax)
Email: sheryl.muir | at | unco.edu
Web: http://nclid.unco.edu/newnclid/
The National Center on Low-Incidence Disabilities addresses the challenges of school-age students who are blind/visually impaired, deaf/hard of hearing, or have siginificant support needs/cognitive.

National Center for Learning Disabilities (NCLD)
(212) 545-7510; (888) 575-7373
Web: www.ncld.org

National Council on Independent Living
(703) 525-3406; (703) 525-4153 (TTY)
Email: ncil | at | ncil.org
Web: www.ncil.org

National Cued Speech Association (NCSA)
Information Services - Cued Speech Discovery

(800) 459-3529 (TTY)
Email: CuedSpDisc | at | aol.com
Web: http://www.cuedspeech.org

National Disability Rights Network (NDRN)*
* formerly the National Association of Protection & Advocacy Systems (NAPAS)
900 Second Street, NE, Suite 211
Washington, DC 20002
(202) 408-9514 ext. 122; (202) 408-9520 (fax); (202) 408-9521 (TTY)
Web: http://www.ndrn.org
The National Disability Rights Network (NDRN) is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities.

National Down Syndrome Congress
1370 Center Drive Suite 102
Atlanta, GA 30338
(800) 232-6372; (770) 604-9500; (770) 604-9898 (fax)
Email: info | at | ndsccenter.org
Web: http://www.ndsccenter.org
Promote the interests of persons with Down syndrome through advocacy, public awareness and information dissemination on all aspects of Down syndrome. The NDSC is a not-for-profit organization formed in 1973, governed by a 22 member Board of Directors, including individuals with Down syndrome.

National Down Syndrome Society
(800) 221-4602; (212) 460-9330
Email: info | at | ndss.org
Web: www.ndss.org

National Family Association for Deaf-Blind (NFADB)
111 Middle Neck Rd.
Sands Point, NY 11050-1129
(800) 255-0411, ext. 275
Email: NFADB | at | aol.com
Web: www.nfadb.org

National Federation of the Blind
200 East Wells Street
Baltimore, MD 21230
(410) 659-9314
Email: pmaurer | at | nfb.org
Web: www.nfb.org

National Fragile X Foundation
(800) 688-8765; (303) 333-6155
Email: natlfx | at | sprintmail.com
Web: www.nfxf.org

National Library Service for the Blind & Physically Handicapped
(800) 424-8567; (202) 707-5100
Publications available in Spanish
Email: nls | at | loc.gov
Web: www.loc.gov/nls

National Mental Health Association
(800) 969-6642; (703) 684-7722; (800) 433-5959 (TTY)
Publications available in Spanish
Email: nmhainfo | at | aol.com
Web: www.nmha.org

National Multiple Sclerosis Society
(800) 344-4867; (212) 986-3240
Email: info | at | nmss.org
Web: www.nmss.org

National Neurofibromatosis Foundation
(800) 323-7938; (212) 344-6633
Email: nnff | at | nf.org
Web: www.nf.org

National Organization of Parents of Blind Children
Carol Castellano, President
National Federation of the Blind
1800 Johnson Street
Baltimore, MD 21230
(410) 659-9314; (410) 685-5653 (fax)
Email: carol_castellano | at | verizon.net
Web: http://www.nfb.org/nopbc
A membership organization of parents working toward a better future for blind children by promoting blindness skills, fostering self-esteem, and utilizing blind adult role models.

National Organization on Fetal Alcohol Syndrome (NOFAS)
(800) 666-6327; (202) 785-4585
Email: nofas | at | erols.com
Web: www.nofas.org

National Parent Network on Disabilities
(202) 463-2299 (V/TTY)
Email: npnd | at | cs.com

National Parent to Parent Support and Information System, Inc.
(800) 651-1151; (706) 374-3822
Email: nppsis | at | ellijay.com

National Reye's Syndrome Foundation
(800) 233-7393; (419) 636-2679
Email: nrsf | at | reyessyndrome.org
Web: www.reyessyndrome.org

National Scoliosis Foundation
(800) 673-6922; (781) 341-6333
Email: scoliosis | at | aol.com

National Spinal Cord Injury Association
(800) 962-9629; (301) 588-6959
Email: nscia2 | at | aol.com
Web: www.spinalcord.org

National Stuttering Association
(800) 364-1677; (714) 693-7480
Email: nsastutter | at | aol.com
Web: www.nsastutter.org

National Tuberous Sclerosis Association
(800) 225-6872; (301) 459-9888
Email: ntsa | at | ntsa.org
Web: http://www.tsalliance.org/

Neurofibromatosis, Inc.
(800) 942-6825; (301) 577-8984
Email: NFInc1 | at | aol.com
Web: www.nfinc.org

Obsessive Compulsive Foundation, Inc.
(203) 315-2190
Email: info | at | ocfoundation.org
Web: www.ocfoundation.org

Oregon Parents United
(541) 389-0004
Email: OPU | at | peak.org
Web: www.oregonparentsunited.org

Osteogenesis Imperfecta Foundation
(800) 981-BONE; (301) 947-0083
Email: bonelink | at | aol.com
Web: www.oif.org

Parents Helping Parents: Parent-Directed Family Resource Center for Children with Special Needs
(408) 727-5775
Publications available in Spanish; Spanish speaker on staff
Email: info | at | php.com
Web: www.php.com

Parents of Galactosemic Children, Inc. (PGC)
(775) 626-0885
Web: www.galactosemia.org

Pathways Awareness Foundation
(800) 955-2445; (312) 236-7411 (TTY)
Brochure and video available in Spanish
Web: www.pathwaysawareness.org

* Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive, Suite 500
Sarasota, FL 34238
(800) 926-4797; (941) 312-0142 (fax)
Email: cic3 | at | pwsausa.org
PWSA (USA) is an organization of families and professionals working together to offer support and provide education and advocacy for people and families living with PWS.

President's Committee's Job Accommodation Network
(800) 526-7234 (Voice/TTY)
Email: jan | at | .icdi.wvu.edu
Web: www.jan.wvu.edu

Recording for the Blind & Dyslexic
20 Roszel Road
Princeton, NJ 08540
(800) 221-4792; (609) 987-8116 (fax)
Email: custserv | at | rfbd.org
Web: http://www.rfbd.org

Registry of Interpreters for the Deaf
(301) 608-0050 (V/TTY)
Email: info | at | rid.org
Web: www.rid.org

Smart Kids with Learning Disabilities
PO Box 2726
Westport, CT 06880
(203) 226-6831
Email: Info | at | SmartKidswithLD.org
Web: www.SmartKidswithLD.org
Smart Kids with Learning Disabilities is a non-profit organization producing a national newsletter for parents of children with LD and ADHD (mailed to members in 49 states) and maintaining a website at www.SmartKidswithLD.org that is recommended by the CCLD. We also offer regional outreach programs.

Southeastern Rett Syndrome Alliance
7564 Windsong Drive
Trussville, AL 35173-1898
(205) 661-9597
Email: admin | at | serett.org
Web: http://www.serett.org
Providing a network of information and emotional support for families and caregivers of Rett Syndrome children and adults; and to increase public awareness of Rett Syndrome.

Special Olympics International
(202) 628-3630
Publications available in Spanish and French; Spanish & French speaker on staff
Email: specialolympics | at | msn.com
Web: www.specialolympics.org/

Specialized Training of Military Parents (STOMP)
6316 S 12th Street
Tacoma, WA 98465
(800) 572-7368; (253) 565-2266; (253) 566-8052 (fax)
Email: stomp | at | washingtonpave.com
Web: http://www.stompproject.org
Provides military parents with individual assistance & information about rights/responsibilities in special education services for their children located in the United States or overseas. STOMP serves all military families stationed in the United State and overseas.

Spina Bifida Association of America
(800) 621-3141; (202) 944-3285
Publications available in Spanish
Email: sbaa | at | sbaa.org
Web: www.sbaa.org

Stuttering Foundation of America
3100 Walnut Grove Rd, Suite 603
PO Box 11749
Memphis, TN 38111-0749
(800) 992-9392; (901) 452-7343; (901) 452-3931 (fax)
Email: info | at | stutteringhelp.org
Web: http://www.stutteringhelp.org
The Foundation provides free online resources to those who stutter and their families, works towards the prevention and improved treatment of stuttering, and supports research into the causes of stuttering.

TASH (formerly The Association for Persons with Severe Handicaps)
(410) 828-8274; (410) 828-1306 (TTY)
Email: info | at | tash.org
Web: www.tash.org

Technical Assistance Alliance for Parent Centers (the Alliance)
(888) 248-0822; (952) 838-9000
Spanish speaker on staff
Email: alliance | at | taalliance.org
Web: www.taalliance.org

Tourette Syndrome Association
(800) 237-0717; (718) 224-2999
Email: ts | at | tsa-usa.org
Web: http://tsa-usa.org/

Trace Research & Development Center
(608) 262-6966; (608) 262-5408 (TTY)
Email: info | at | trace.wisc.edu
Web: http://trace.wisc.edu/

Uniquely Gifted
Internet Resources for Gifted/Special Needs Children
Web: http://www.uniquelygifted.org

United Cerebral Palsy Association, Inc.
(202) 776-0406; (800) 872-5827; (202) 973-7197 (TTY)
Publications available in Spanish
Email: ucpnatl | at | ucpa.org
Web: www.ucpa.org

US National Easter Seals
230 West Monroe Street, Suite 1800
Chicago, IL 60606
(312) 726-6200; (312) 726-4258 (TTY); (312) 726-1494 (fax); (800) 221-6827
Web: http://www.easter-seals.org/

Williams Syndrome Association, Inc.
(248) 541-3630

Williams Syndrome Family of Hope
204 37th Avenue North, Suite 358
St. Petersburg, FL 33704
(727) 557-7177
Email: penny | at | wsfamilyofhope.org
Web: http://www.wsfamilyofhope.org
We are a grassroots not for profit organization that was formed by families for families. Our mission is to provide support, resources, education and financial assistance to those affected by Williams syndrome.

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Wrightslaw: Special Education Law, 2nd Edition, by Pam and Pete Wright
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Wrightslaw: All About IEPs
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Wrightslaw: All About Tests and Assessments
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Surviving Due Process: Stephen Jeffers v. School Board
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