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Family Advocacy and Support Groups

Health Resources

 

 

Regional Resources
 

 

Private State-wide Advocacy Resources

 

National Resources

 

 

Regional Resources

Attention Deficit Disorder Institute  (For Profit)
131 Kings Highway North, Westport, CT. 06880
Tel. (203) 221-4710 or (203) 221-4706
Medical  & counseling for persons who have attention deficit disorder.


Cerebral Palsy Group

Alison Sanchez, Advocacy Director

400 Putnam Pike Suite J #242, Smithfield, RI  02917

Tel.  (774) 325-0083

www.cerebralpalsygroup.com

Epilepsy Support Group
Contact: Norwalk Hospital, Norwalk, CT 
Tel. (203) 852-2400

Family Support/Respite Groups
Contact: Daniella Buri-Kurtz
The Kennedy Center, 2440 Reservoir Avenue, Trumbull, CT 06111
Tel. (203) 365-8522 ext.233
Meets monthly/every other month.  Morning/evening support groups for families.

Padres Abriendo Puertas
Angel Avila and Maria Engborg, Coordinators
50 Glenville Street, Greenwich, CT 06830
Tel. (203) 531-1880 ext. 303 and 314
Provides assistance, support, and training to Latino parents of children with developmental disabilities. Focuses on the concerns with the educational sysytem.

Parent Exchange Greenwich Health
Tel. (203) 863-3794
Trainings and parent support

Pizza Moms
Nanette Jordan, 33 1/2 A Plymouth Avenue, Norwalk, CT. 06581
Tel. (203) 847-5963
Email: nanette618@yahoo.com
Meets first Tuesday of every month; provides informal information sharing and support group during supper at Post Corner Pizza in Darien.

SPED*NET New Canaan (Special Education Network of New Canaan)
P.O. Box 1612, New Canaan, Ct, 06840
Email: info@spednet.org
www.spednet.org
Parents of students receiving special education services hold monthly informative meetings and distribute a newsletter.

SPED*NET Wilton (Special Education Network of Wilton)
Contact: Eve Kessler, Esq.
Email: info@spednetwilton.org
www.spednetwilton.org
 SPED*NET Wilton is a special education network that holds a monthly forum for discussing issues and ideas and developing strategies for special education. Additionally, it serves as both a parent to parent support system and an advocacy network for families of those with special needs.

STEPs of Darien (Support for our Town’s Exceptional People)
YWCA of Darien/Norwalk, 49 Old Kings Highway North, Darien, CT 06820
Phone: (203) 655-2535 ext. 27            
Fax: (203) 655-9137
http://www.spednet.org/steps/
This organization supports parents in their role as advocates for their children with special needs. STEP is committed to advancing, involving and including Darien’s residents with disabilities in all facets of our community.

Westport SEPTA (Special Education Parent Teacher Association)
Westport Town Hall
110 Myrtle Ave. Westport, CT 06880.
Contact: Rebecca Bruno, Educational Support
(203) 227-3008
Email: info@westportsepta.org.
SEPTA is a PTA within a school district. Brings together people who are interested in special education and children with special needs. Supports, strengthens and promotes the welfare of children with special needs. Promotes an understanding of special education and strives to enrich the lives of children with special needs.

Westport Library
20 Jessup Road, Westport, CT 06880
Contact: Eva Greenwald (203) 554-4462
Email: evagreenwald@sbcglobal.net
Calendar of summer children's programs includes Tuesday Storytime (10:30-11:00) at Longshore Country Club, Wednesday Storytime on the Green (11:00-11:30), or Friday Fun Films 11:00-11:30 among other options.


Private State-wide Advocacy Resources

A.J. Pappanikou Center for Developmental Disabilities
University of Connecticut, 263 Farmington Ave., MC 6222,
Farmington, CT 06030
Tel: (860) 679-1500 Toll-free: (866) 623-1315
TTY: (860) 679-1502 Fax: (860) 679-1571
www.ajp.uconn.edu
Projects: assist parents of children with special needs in learning to transition their children into the mainstream of life; sibling supports; assessments for job matches.

The Arc/Connecticut
Lynn Warner, Executive Director
43 Woodland Street Suite 260, Hartford, CT 06105
Tel. 860-246-6400 Fax: 860-246-6406
Statewide advocacy agency for persons and families of persons with developmental disabilities.

Atypical PDD/Asperger Syndrome Support Group
34 Bullfrog Lane. Trumbull, CT 06611.
Maggie Casciato Tel. (203) 374-9808, Email: mcasciat@ftae.com
For persons with autism, social, emotional, behavioral, and
neurological disorders.

Autism Society of Connecticut
103 Talcott Rd, Guilford, CT 06437
Tel.( 888) 453-4975
Email: asconn@sbcglobal.net
www.autismsocietyofct.org
Promotes the general welfare of persons with autism.

Connecticut Association for Children with Learning Disabilities (CACLD)
25 Van Zant Street, Unit 15-5, Norwalk, CT  06855
Contact: Beryl Kaufman, Executive Director
Tel. (203) 838-5010    Fax (203) 866-6108
cacld@optonline.net
A regional, non-profit organization that supports individuals, families, and professionals by providing information, education, and consultation while promoting public awareness and understanding. CACLD's goal is to ensure access to the resources needed to help children and adults with learning disabilities and attention disorders achieve their full potential.

Connecticut Association for the Deaf
P.O. Box 270539 West Hartford, CT  06127
Tel. (860) 232-6818 (Fax or TTY)

Conn
ecticut Austim Resource Center

101 N Plains Industrial Rd, Harvest Park, Building 1A,
Wallingford, CT 06492
Tel. (203) 265-7717 Fax: (203) 265-7768

Connecticut Council on Developmental Disabilities
460 Capital Avenue. Hartford, CT 06106-1308
Tel. (860) 418-6160   or   (860) 418-6172 (TTY)
Fax  (860) 418-6003 or e-mail 72322:2415 @ compserve.co
www.state.ct.us/ctcdd/
Mission is to promote empowerment and full integration of people with developmental disabilities and their families by changing systems to support interdependence, productivity, and accessibility in natural community life.

Connecticut Down Syndrome Congress, Inc.
47 Mcclean Ave, Stamford, CT 06905
Tel. (203) 351-1157‎
www.ctdownsyndrome.org
Mission is to improve the lives of persons with Down Syndrome.

Connecticut Family Voices at the UConn Center on Disabilities
263 Farmington Avenue. MC 6222, Farmington, CT 06030-6222
Tel. (860) 679-1595 or (860) 679-1500
Contact: Molly Cole, Mary Beth Bruder

Connecticut Family to Family
Joy Liebeskindest
Tel. (860) 583-3232 ex: 108           

Connecticut Families for Effective Autism Treatment
P.O. Box 370352, West Hartford, CT 06137-0352
Tel. (860) 571-3888           

Connecticut Office of Protection & Advocacy
60B Weston Street, Hartford # B, Connecticut 06120-1551
Tel. (860) 297-4300            TTY (860) 566-2102           
Fax (860) 566-8714            V/TTY (800) 842-7303
www.state.ct.us/opapd
Independent State agency created to safeguard and advance the civil and human rights of people with disabilities in Connecticut by providing information, referrals, consultations, organizing assistance to local groups, and various types and levels of advocacy assistance.

Connecticut Parent Advocacy Center    (CPAC)
338 Main Street, Niantic, CT 06357 
Tel. (860) 739-3089    (800) 445-2722
www.cpacinc.org
A statewide training and information center for parents of children and youths with disabilities. It provides information on special education rights; referral services; workshops for parents; training for professionals; a lending library; SPEAK OUT newsletter and individual assistance. All services for parents are free and bi-lingual assistance is available.

Disability Resource Center
80 Ferry Boulevard # 210, Stratford, CT  06497
Tel. (203) 378-6977(V); (203) 378-3248 (TDD)
Non-profit, non-residential resource and advocacy center for people with disabilities.  Offers ADA education, community advocacy, assistive technology and personal assistance researching, and trainings in disability awareness, independent living skills, and assistive technology. New Fairfield County site at South West Easter Seal Rehabilitation Center.

Prader-Willi Syndrome Association – CT Chapter
35 Ansonia Drive, North Haven, CT  06473-3306
Contact: Eileen Fletcher (203) 239-9902
nannyeileen2@aol.com

Connecticut State Society for Autistic Children (ConnSAC)
125 Harrington Street, Meriden, CT  06451
Tel. (203) 235-7629

 Brain Injury Association of CT, Inc.
333 E River Dr # 106, East Hartford, CT 06108
Contact: Julie Peters, Executive Director
Tel: (860) 721-8111 Fax: 860-721-9008
jpeters@biact.org

Communitas
Contact:  Bev Jackson
The Community Place, 730 Main Street, Manchester, CT  06040
Tel: 860-645-3177 fax: 860-645-3179
bjsbuggy@juno.com
International organization to help include people into community life.

Corporation for Independent Living (C.I.L.)
157 Charter Oak Avenue

Wethersfield, CT  06106

Tel: 860-563-6011
www.cil.org
Provides property management & development services to community residential agencies & individuals.  Has a low-interest loan for accessibility programs.

Epilepsy Foundation of Connecticut Affiliate of
Epilepsy Foundation of America

386 Main St, Middletown, CT 06457
Tel. (860) 346-1924
www.efa.org
Parent and family telephone network, support groups and
advocacy committee.

Fragile X Association of Connecticut
264 Carlton Drive, Chesire, CT  06710
Tel. (203) 250-7640
Support for families, annual meetings, newsletters.

The Georgiana Organization, Inc. (Nonprofit)
13 Mine Hill Rd, Roxbury, CT 06783
Tel. (860) 355-1545
Established by Georgiana and her family to promote auditory
integration training.

Learning Disability Association of Connecticut (LDAC)
999 Asylum Avenue, 5th Floor, Hartford, CT 06105
Phone: (860) 560-1711 • Fax: (860) 560-1750

March of Dimes, Connecticut Chapter
867 Main Street, Manchester, CT 06040
Tel. (860) 812-0079
http://www.marchofdimes.com

Mental Health Association of CT, Inc.
20-30 Beaver Road # 108, Weathersfield, CT 06109
Tel. (860) 529-1970

National Organization for Rare Disorders (NORD)
P.O. Box 1968
55 Kenosia Avenue, Danbury, CT   06813-1968
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
www.rarediseases.org
A clearing house for information on over 5,000 rare disorders.  Members receive a newsletter and networking with other families.

PATH Parent to Parent of CT, Parents Available to Help, Inc.
P.O. Box 117, Northford CT 06472
Tel. 1-800-399-PATH or 1-203-234-9554 Fax: (210)509-2960
PATHP2PCT@pathct.org

People First of Connecticut
211 Main Street, Danbury CT, 06810
Tel. (203) 792-3540
http://www.wecahr.org/people.htm
A group of individuals with developmental disabilities,
speaking on their own behalf.

Sibling Information Network
A.J. Pappanikou Center for Disability Studies
University of Connecticut, 249 Glenbrook Road,
Unit 2064, Storrs, CT. 06269-2064
Tel. (860) 486-4985, Fax (860) 486-5037
www.ajp.uconn.edu
Provides resources and assistance for siblings of people with disabilities.

Special Education Resources Center (S.E.R.C.)
Contact:  Steve Krashner, 25 Industrial Park Road,
Middletown, CT 06457-1520
Tel. (860) 632-1485 Fax: (860) 632-8870
www.serc.rh.edu
Educational resources and training, has a resource library, a Parent Resource Packet, and computer software.

United Cerebral Palsy Association of Connecticut, (UCPA)
80 Whitney Ave., Hartford, CT. 06105
Tel. (860) 236-6201
Services for individuals with multiple disabilities for advocacy, respite, etc.

WeCAHR, Western Connecticut Association for Human Rights
211 Main Street., Danbury, CT  06810
Tel. (203) 792-3540     Fax (203) 794-1620
www.wecahr.org


National Resources

Alliance of Genetic Support Groups
35 Wisconsin Cr. #440, Chevy Chase, MD  20815
Tel. (800) 336-GENE
Provides free kits on how to start a support group and information
on genetic disorders.

American Foundation for the Blind
Product Center, 100 Enterprise Place, P.O. Box 7044,
Dover, DE. 19903-7044
Tel. (800) 829-0500

American Speech-Language-Hearing Association
10801 Rockville Pike, Rockville, MD 20852
Tel. (800) 638-8255 or (301) 897-5700           
Fax (301) 571-0457

Angelman Syndrome Foundation, Inc.
414 Plaza Drive, Suite 209, Westmont, Il,  60559
Tel. (800) 432-6435       Fax  (630) 655-0391
www.angelman.org

The ARC of the U.S.
500 E. Border Street, Suite 300, PO Box 1047, Arlington, TX  76010
Tel. (800) 433-5255   or   (817) 261-6003    Fax (817) 277-3491                
www.thearc.org

Association for the Care of Children’ s Health
19 Mantau Road, Mt. Royal, New Jersey 08061
Tel. (609) 224-1742      Fax (609) 244-1742

The Association for Children with Down Syndrome
2612 Martin Avenue, Bellmore, NY  11710
Tel. (516) 221-4700


(National) Autism Hotline/Autism Services Center
605 Ninth Street, Prichard Building, PO Box 507,
Huntington, WA  25710-0507
Tel. (304) 525-8014    Fax (304) 525-8026

(National) Autism Society of America
7910 Woodmont Avenue, Suite 650, Bethesda, MD 20814-3015
Tel. (800) 328-8476       Tel. (301) 657-0881     Fax (301) 657-0869
www.autism-society.org
National center for services for individuals with diagnosis of autism/developmental disabilities.

Axis Consultation & Training Ltd. 
340 Machleary Street, Nanaimo, British Columbia, Canada V9R 2G9 
Tel. (250) 754-9939       Fax: (250) 754-9930
http://www.normemma.com

Beach Center on Families and Disabilities-The Family Connection
Bureau of Child Research
4138 Haworth Hall, University of Kansas, Lawrence, KS  66045
Tel. (913) 864-7600 or  (800) 854-4938
 www.beachcenter.org

A research and training center that conducts research on family issues which are translated into a wide range of research, dissemination, and training projects addressing family well-being across the life span. Newsletters and a publication catalog available upon request.

Children with Attention Deficit Disorders
499 NW 70th Avenue, Suite 109, Plantation, FL 33317
Tel. (305) 587-3700    or   (305) 587-4599

Children's Defense Fund
122 C Street NW, Washington DC 20001
Tel. (202) 628-8787
Advocates for all children, especially those who are poor, those who have disabilities, or those belong to a minority group.

Council for Exceptional Children
1920 Association Drive, Reston, VA 22091
Tel. (800) 336-3728   Fax (703) 264-9494
www.cec.sped.org
Professional organization dedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted.

CHADD National Office
8181 Professional Place, Suite 201, Landover, MD 20785
Tel. (301) 306-7070   Fax (301) 306-7090
www.chadd.org
Serves individuals with attention-deficit/hyperactivity disorder.

Disability Rights Activist
www.disrights.org

Down's Syndrome Congress (National)

7000 Peachtree–Dunwoody Road , Lake Ridge 400 Office Park
Building #5, Suite 100, Atlanta, GA 30328
Tel. (800) 232-6372 or  (770) 604-9500   Fax: (770)604-9898
www.ndsccenter.org

Down Syndrome Society (National)
666 Broadway, Suite 810, New York, NY  10012
Tel. (800) 221-4602   Fax  (212) 460-9330
www.ndss.org


Easter Seals National Headquarters
230 W. Monroe Street, Suite 1800, Chicago, IL  60606
Tel. (312) 726-6200   (312) 726-4258   (800) 221-6827
Fax (312) 726-1494

Epilepsy Foundation
4351 Garden City Drive, Landover, MD 20785-2267
Tel. (800) 332-1000     (301) 459-3700     Fax (301) 577-2684
 www.efa.org

Family Education Network
www.familyeducation.com
Internet service for parents/ professional to come together, to share concerns, and to ask questions. Topics range from college savings to special needs resources.

Federation of Families for Children's Mental Health
1021 Prince Street, lst Floor, Alexandria, VA  22314-2971
Tel. (703) 620-3660

Fragile X Foundation (National)
P.O. Box 190488, San Francisco, California  94119
Tel. (800) 688-8765 or (510) 763-6030   Fax 510-763-6223
www.nfxf.org

Unites the fragile X community to enrich lives through educational and emotional support, to promote public and professional awareness, and advance research toward improved treatments and a cure for fragile X syndrome.
           
Goodwill Industries International, Inc.
9200 Rockville Pike, Bethesda, MD 20814
Tel. (240) 333-5200
www.goodwill.org
Provides job skill training and job placement assistance to people with disabilities.

Institute on Community Integration-University of Minnesota
109 Pattee Hall, 150 Pillsbury Drive, S.E.,Minneapolis, MN  55455
Tel. (612) 624-4512

International Society for Augmentative and Alternative Communication
P.O. Box 1762, Station R, Toronto, Ontario m464A3 CANADA
Tel. (416) 421-8377

Institute for Child Health Policy
5700 SW 34th Street, Suite 323, Gainesville, FL. 32608-5367
Tel. (352) 392-5904   Fax (352) 392-8822
www.ichp.ufl.edu  
Electronic libraries devoted to issues in maternal and child health, with emphasis on children with special health care needs and their families.

Kids On The Block
9385-C Gerwig Lane, Columbia, MD 21046
Tel. (800) 368-5437
Provides disability awareness curriculum for local communities using puppets.

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue, White Plains, NY 10605
Tel. 888-MODIMES (663-4637)
www.modimes.org
Provides information and referral on birth defects, genetics and prenatal care.

MUMS National, Parent –to –Parent Network
150 Custer Court, Green Bay, WI 54301-1243
Tel. (877) 336-5333 (Parents only please)   (920) 336-5333
Fax (920) 339-0995
www.netnet.net/mums/
Nation-wide support group for parents/ foster parents of children with any disability, delay, or disorder.  MUMS provides support through a networking system that matches parents with others whose children have similar conditions.

National Association for Parents of the Visually Impaired
P.O. Box 317, Watertown, MA  02771-0317
Tel. (800) 562-6265

National Association for Visually Handicapped
22 W 21st Street, 6th Floor, New York, NY 10010
Tel. (212) 889-3141   Fax  (212) 727-2931

National Fathers Network
The Merrywood School, 16120 N.E. Eighth Street, Seattle, WA   98008
Tel. (206) 747-4004 James May, Fax  (206) 284-2859
Advocates for fathers through mentor program and newsletter support.

National Health Information Center, U.S.
P.O. Box 1133, Washington DC  20013-1133
Tel. (800) 336-4797     Tel. (301) 565-4167
Provides free information, referral system and publications on rare diseases and the drugs used to threat them. Referrals and some fact sheets are available.

National Information Center for Children & Youths with Disabilities (NICHY)
P.O. Box 1492, Washington DC 20013-1492
Tel. (800) 695-0285    (202) 884-8200     Fax  (202) 884-8441
www.nichey.org
NICHY offers referrals, state resource sheets, newsletters, and fact sheets about various disabilities at no cost.  Some materials are available in Spanish.

National Information Center on Deafness
Gallaudet University, 800 Florida Avenue NE, Washington, DC, 20002,
Tel. (202) 651-5051

National Information System for Health Related Services
Center for Developmental Disabilities
Benson Building, First Floor, Columbia, SC  29208
Tel. (800) 922-9234
This clearinghouse provides information and referral for parents and professionals concerned with children ages 0-21 who have developmental disabilities or special health care needs.  Referrals are made to federal, state, and private non-profit agencies across the U.S.

National Maternal and Child Health Resource Center, University of Iowa
College of Law Building, Melrose & Byington, Iowa City, IA  52242
Tel. (319) 335-9067
This clearinghouse makes referrals, conducts research, and provides a variety of information to families and professionals.  Publications are available.

National Organization for the Dually Diagnosed (NADD)
110 Prince Street, Kingston, NY  12401
Tel. (800) 331-5362

National Organization for Rare Disorders (NORD)
P.O. Box 8923, New Fairfield, CT  06812-1783
Tel. (800) 999-6673 or  (203) 746-6518   Fax (203) 746-6481
www.rarediseases.org
Information sheets on various disorders will make referrals and link families with others who are involved with similar disorders for parent-to-parent type support.

National Program on Self-Determination
7 Leavitt Lane, Suite 101, Durham, NH 03824-3522
www.self-determination.org

People First
www.peoplefirst.org

People First is a global organization that is comprised of self-advocacy groups of people with learning difficulties, people with intellectual disabilities, people with developmental disabilities and/or people with disabilities who speak up for themselves and work to improve the lives of their members.

PRISM (Parents & Researchers Interested in Smith-Magenis Syndrome)
76 South New Boston Road, Francestown, NH 03043-3511
Tel. (603) 547-8384
www.smithmagenis.org

Prader-Willi Syndrome Association
2510 South Brentwood Blvd. Suite 220, St. Louis, MO, 63144
Tel. (800) 926-4797
www.pwsausa.org

Research & Training Center  National port and Children's Mental Hospital
Portland State University, P.O. Box 751, Portland, OR  97207
Tel. (800) 628-1696  
www.rtc.pdx.edu

SABE (Self-Advocates Becoming Empowered)
www.sabeusa.org

Self Advocates Becoming Empowered (SABE) is the self-advocacy organization of the United States. Founded in 1990, we have been working hard for the full inclusion of people with developmental disabilities

Scoliosis Foundation (National)
72 Mount Auburn Street, Watertown, MA  02172
Tel. (617) 926-0397  Fax (617) 926-0398

Search and Respond
c/o Exceptional Parent Magazine, Suite 303, Brookline, MA 02146
Tel. (617) 730-5800    Fax (617) 730-8742
Prints letters from people in search of others who are dealing with similar issues.

SibNet
Sibling Support Project, Children's Hospital Medical Center
P.O. Box 5371, CL-09, Seattle, WA  98105-0371
Tel. (206) 368-4911   Fax: (206) 368-4816
www.seattlechildrens.org/sibsupp/
A national program dedicated to the interests of brothers and sisters of people with special health and developmental needs

Spina Bifida Association of America
4590 MacArthur Blvd. NW, suite 250, Washington, DC  20007-4226
Tel. (800) 621-3141 or  (202) 944-3285    Fax  (202) 944-3295
www.sbaa.org

TASH-The Association for Persons with Severe Handicaps

7010 Roosevelt Way, N.E., Seattle, WA. 98115

Tel. (206) 361-8770
www.tash.org
Advocates for
 integrated education and full inclusive settings.


United Cerebral Palsy Association (UCPA)
1522 K Street NW, Suite 1112, Washington, DC  20005
Tel. (800) 872-5827 or  (202) 842-1266    Fax (202) 842-3519
www.ucpa.org

Research & Training Center on Community Integration
Center on Human Policy, Syracuse University
200 Huntington Hall, Syracuse, NY  13244-2340
Tel. (315) 443-3851

HEALTH SERVICES

Dentist

Dentably

Down Syndrome & Dental Care - A Guide for Caregivers and Family Members