These are examples of local and national Web Resources for CT families and professionals separated into three sections. We have listed separate sections for Autism and Down syndrome as there are so many resources available.
Section 1: General and specific resources. Section 2: Autism resources. Section 3: Down Syndrome resources.
1. General resources:
The Connecticut Family Support Network (CTFSN) provides one-on-one telephone,email and Facebook emotional support, advocacy and guidance, also hosts 20 support groups monthly in CT. CTFSN provides workshops, information, newsletters, and collaboration with other state agencies, community groups, and nonprofit organizations.
CT Parent Advocacy Center 1-800-445-2722 Provides a website and CT Resource Directory for ages 0-22 (a very comprehensive directory of all types of resources available for special needs individuals, advocacy and transition.) CPAC has among its resources this list of area support groups, useful to families: Finding a Parent Support Group. It also provides important information on Legal Rights regarding public school education: http://www.cpacinc.org/materials-publications/legal-rights/
CT Birth to Three: CT Birth to Three supports families when they have concerns about their children’s development.
CT DDS Families First: CT DDS Families First is a grassroots organization dedicated to supports for families living with IDD so that persons can live and work in the community. It focuses on influencing CT State legislature to support the Dept of Developmental Services and providing information to its families.
The Arc of the United States
The primary purpose of The Arc is the promotion of the general welfare of persons with intellectual and/or developmental disability and their families. The Arc provides a region by region listing of local chapters. The Arc of Mass (also see listing below) hosts Operation House Call. Local Arc’s provide a variety of services, which vary from one Arc to another. Services may include social and recreation and job opportunities, workshops, public education, parent and sibling support groups, advocacy support, respite and more.
The Arc of Massachusetts:
In addition to its legislative advocacy and community services The Arc of Mass. hosts the Operation House Call Program in several health professional schools in Mass, and is currently host of the Operation House Call program at the Yale School of Nursing in Ct. Maureen Wallace, journalist and parent, writes about the program. Relevant publications by Amanda Nichols MSW, Former Director of Health Care Policy at The Arc of Mass. include: Left Out in the Cold, 2008 and Uncovering Health Care Inadequacies Among Adults with ID/D, 2010.
The American Association on Intellectual and Developmental Disabilities (AAIDD): Mission statement: TheAAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities.
Apraxia of Speech (Apraxia Kids): View this website as an example of a good resource for families and professionals
(Autism: scroll down to Section 2 for expanded list.)
Cerebral Palsy: View these websites. United Cerebral Palsy and American Academy for Cerebral Palsy and Developmental Medicine.
A listing of 300 national non-profit organizations and government agencies that provide disability related information through toll free numbers.
(Down Syndrome: scroll down to Section 3 for expanded list.)
Family Voices Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families–including those of cultural, linguistic and geographic diversity-in order to improve healthcare services and policies for children. See also PathCt listed below.
Horizons Inc, South Windham, CT: Horizons provides year around supports to individuals with IDD in a variety of settings in Eastern CT. First: a summer camp (2-8 weeks) for ages 8-39 (Masters Camp for older ages). Attendees come from all over the US, but largely from CT. In addition Horizons has year around services in educational supports through transition years, and for adults: supported living, work, and day program supports. There “Weekends in the country” program offer weekend camps year around for Ct area individuals.
An excellent website sponsored by the Education Development Center, Inc. in partnership with the Whole Schooling Consortium. Visit this website to find information on successful inclusion practice, resources, planning, research and current events.
The Molly Ann Tango Memorial Foundation Connecticut based this foundation helps finance the purchase of much-needed medical equipment and services when insurance is exhausted and other social programs are not available. The Foundations also helps families navigate the medical and social communities to find the products and services that will meet their needs.
National Information Center for Children and Youth with Disabilities (NICHCY)Provides information on disabilities and related issues, focusing primarily on ages 0-22
PathCT Path Parent to Parent/Family Voices of Ct is a network of families providing information and emotional support to others who have a child with developmental or health related needs. Path/FVCT reaches out to help strengthen families coping with similar situations in Ct, and the organizations that serve them, to reduce isolation, empower families as advocates, and reaffirm their values as parents and caregivers.
Most complete online American Sign Language dictionary with several thousand videos.
Provides year-round sports training and athletic competition for individuals with intellectual disability of all ability levels. The Special Olympics World Summer Games 2015 in Los Angeles boasted 6,500 athletes. In local Special Olympics programs coaching and support is provided as needed with the use of sports coaches and Unified Partners and volunteers. The Healthy Athletes initiative specifically addresses the health needs of persons with intellectual disability.
Special Olympics, CT Explore Special Olympics CT for Connecticut programs.
Spina Bifida Association:
Provides advocacy, support, community and advocacy.
For professionals the Spina Bifida Association offers:
Primarily serving Fairfield County, CT, STAR Inc provides services to over 500 adults and children who have IDD. Comes highly recommended by some of our CT Operation House Call families.
An international membership association established in 1975 and dedicated to inclusive communities though the use of research, education and advocacy.
Williams Syndrome Association
For healthcare providers this link is useful: https://williams-syndrome.org/doctor In addition please see the Williams Syndrome Association video explaining their resources: What Is the Williams Syndrome Association. Lastly, see this 3 minute 2017 award winning film for and about persons who have Williams Syndrome, created by the Williams Syndrome Foundation, a UK based support network.
2. Autism resources:
AANE provides support, community and resources to Adults, Children and Teens, and Professionals. It primarily serves those who have an autism diagnosis but no intellectual disability. It keeps the word “Asperger” in its name so that all interested persons can find the organization even if they have not updated their nomenclature to the new DSM 5 guidelines.
Autism Families CT: This organization is dedicated to providing recreational, cultural, and social activities for children with ASD, and helping children and families make lasting and meaningful social connections.
The Yale Child Study Center: The Child Study Center provides a variety of services including evaluation and therapy.
The Seed Autism Center Located in Stamford,CT, the Seed Autism Center offers evalution, ABA therapy, Speech and Language therapy and more.
Autism Services & Resources Connecticut, Inc. Provides advocacy, training, and family support. ASRC serves as an important nonprofit CT resource for Autism services and supports. Its mission is to educate and empower families and individuals affected by autism.
Autism Society: In 2018 celebrating 50 years of improving lives of those who have autism. Website tabs include many helpful drop down links and resources under tabs: What is Autism, Living with Autism, and Que es Autismo?
For parents and professionals, early warning signs, video glossary, advocacy, research. (also produced Autism Everyday, 13 min video, 2006, to heighten public awareness of family stressors.)
The Autism Speaks Autism Treatment Network (ATN):
ATN was established to provide a place for families to go for high quality, coordinated medical care for children and adolescents with autism and associated conditions.
3. Down Syndrome Resources:
National Down Syndrome Society (NDSS):
Founded in 1979 the National Down Syndrome Society was established to increase public awareness, assist families, and sponsor scientific research. The website provides valuable health care guidelines for professionals. See dropdowns under About DS/DS Through the Lifespan/Healthcare & Research.
Mass General Hospital Down Syndrome Program, Boston, MA. Provides multidisciplinary care to people with Down syndrome of all ages, birth through adulthood.
Boston Children’s Hospital Down Syndrome Program. Provides multidisciplinary care to people with Down syndrome up to age 18.
21 Strong is a parent support group active in Fairfield County, providing playgroups, outings, networking and connection to larger Down Syndrome area events and organizations.
The DSACT mission is to improve the lives of people with Down syndrome, by promoting equity, opportunities, inclusion, and by empowering them and their families in all aspects of life. They provide statewide support, advocacy, information and networking for families (see their list for regional support groups), friends and professionals, and for individuals with Down syndrome.
Massachusetts Down Syndrome Congress:
The MDSC provides the northeast US region with support, advocacy, information and networking for families, friends and professionals, and for individuals with Down syndrome. “Understanding a Down Syndrome Diagnosis” (Eng/Span booklet)- for parents who are in the process of making a decision regarding the pregnancy. www.lettercase.org
National Down Syndrome Congress (NDSC):
Founded in 1973 this national organization provides information, advocacy and support to professionals, families and friends. A yearly national conference attracts people from all over the U.S.A.
The Down Syndrome Research and Treatment Foundations (DSRTF): Visit this site to explore a wide variety of important research projects.