Here you will find examples of excellent resources for CT families, and professionals, in three sections. Please scroll down to find:
1. General & Diagnosis Specific Resources.
2. Autism (a separate section as these are plentiful)
3. Down Syndrome (a separate section as these are plentiful)
1. General & Diagnosis Specific Resources:
Center for Parent Information & Resources: This resource connects families to various parent centers who serve families of children with disabilities across several states, nationally.
The Connecticut Department of Developmental Disabilities: This is CT’s official state website for the state funded programs for those with developmental disabilities.
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 CPAC provides many resources, training programs, and advocacy supports for parents of children with special needs. As an example please view their webpage for CPAC programs: https://cpacinc.org/programs.aspx
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 Connecticut: The Arc Connecticut is Connecticut’s Arc, an important and early chapter for The Arc of the United States, the national umbrella organization for all of the chapters of The Arc. It connects families, and provides teaching and advocacy in multiple areas. Note that the Operation House Call teaching program is hosted by The Arc of Massachusetts (below) with approval of The Arc Connecticut.
The Arc of Massachusetts:
In addition to its legislative advocacy and community services The Arc of Mass. hosts the Operation House Call Program (OHC) in several health professional schools in Mass, and is currently also host of the Operation House Call program at the Yale School of Nursing in Ct. Maureen Wallace, journalist and parent, writes about the OHC 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. Please contact The Arc of Mass for these publications.
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: Students please scroll down to Section 2 below, for the expanded list.
Cerebral Palsy: View these websites. United Cerebral Palsy and American Academy for Cerebral Palsy and Developmental Medicine.
Down syndrome: Students please scroll down to Section 3 below for the 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.
Inclusive Schools:
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 Fragile X Foundation (US)
National Organization for Rare Disorders (NORD)
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.
Prader Willi Syndrome Association USA
Signing Savvy
Most complete online American Sign Language dictionary with several thousand videos.
Special Olympics:
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. The Spina Bifida Association provides A Guide for Medical Professionals.
Star Inc:
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.
TASH: https://tash.org/about/national-agenda/
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.
Yale-New Haven Children’s Hospital
2. Autism resources:
Asperger/Autism Network:
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 evaluation, 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?
Autism Speaks:
Founded in 2005 by parent advocates Autism Speaks now claims global influence. It provides guidance and educational support for parents and professionals in the various areas of its mission: global understanding and acceptance, research, early diagnosis (see their webpage for parents: https://www.autismspeaks.org/signs-autism) and timely interventions, transition to adulthood, and access to reliable information and services throughout the life span. See also the Autism Care Network (formerly the Autism Treatment Network) below.
Autism Care Network: Launched in 2021 and supported by Autism Speaks this network of 17 hospitals and treatment centers connects families to assessment, support and healthcare resources. In addition the Autism Care Network (formerly known as the Autism Treatment Network, or ATN) uses data and input from families to aid researchers whose aim is to develop best practice models.
3. Down Syndrome Resources:
Down Syndrome Association of CT (DSACT) 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. It provides statewide support, advocacy, information and networking for families (see their list for regional support groups), friends and professionals, and for individuals with Down syndrome. Please also see the MDSC below, a strong partner in their work.
Massachusetts Down Syndrome Congress (MDSC):
The MDSC is a premium regional and national support resource for families with Down syndrome. It’s policy is “pro-information”. The MDSC provides support, advocacy, information and networking for families, friends and professionals, and for individuals with Down syndrome. (It works closely with the Down Syndrome Association of CT.) Healthcare professionals take note: Among its many resources, used locally and nationally, is its First Call Program which provides professionally trained individuals to respond to an expectant parent’s need for information, with no pressure regarding life choices. This can include meeting a family who has undergone training in this area. Other resources provided on its website include important practice information and health care guidelines for healthcare practitioners. Please visit: https://mdsc.org/programs/for-healthcare-professionals/
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.
LuMind. Founded in 2004, the LuMind organization works closely with other resources on this list. Of particular interest to healthcare professionals will be their research information and initiatives in various healthcare areas. Don’t miss LuMind’s Down Syndrome Clinical Trials information page.
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 MDSC and DSACT listed above belong in this national organization.
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.
21 Strong: 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 Down Syndrome Research and Treatment Foundations (DSRTF): Visit this site to explore a wide variety of important research projects.
National Institute of Health (NIH) Down Syndrome Research Portfolio