We list examples of excellent resources for CT families and professionals separated into three sections:
This resource connects families to various parent centers that serve families of children with disabilities across several states nationally.
This is CT’s official state website for the state-funded programs for those with developmental disabilities.
CPAC provides many resources, training programs, and advocacy support 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 supports families concerned about their children’s development.
CT DDS Families First is a grassroots organization that supports families living with IDD so that people can live and work in the community. It focuses on influencing the CT State legislature to support the Department of Developmental Services and providing information to its families.
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 various 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 is Connecticut’s Arc, an essential 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 the approval of The Arc Connecticut.
Besides its legislative advocacy and community services, The Arc of Massachusetts hosts the Operation House Call Program (OHC) in several health professional schools in Mass and currently hosts the Operation House Call program at the Yale School of Nursing in Connecticut. 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.
Mission statement: The AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities.
View this website as an example of a good resource for families and professionals.
Family Voices is a national organization and grassroots network of families and friends of children and youth with special healthcare needs and disabilities that promotes partnerships with families—including those of cultural, linguistic, and geographic diversity—to improve healthcare services and policies for children. See also PathCt listed below.
Cerebral Palsy:
View these websites: United Cerebral Palsy and American Academy for Cerebral Palsy and Developmental Medicine.
Horizons provides year-round support to individuals with IDD in various 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-round services in educational support through transition years, and for adults, it has supported living, work, and day program support. Their “Weekends in the Country” program offers weekend camps year-round for CT area individuals.
An excellent website sponsored by the Education Development Center, Inc. in partnership with the Whole Schooling Consortium. Visit this website for information on successful inclusion practices, resources, planning, research, and current events.
This foundation helps finance the purchase of much-needed medical equipment and services when insurance is exhausted, and other social programs are unavailable. The foundation also helps families navigate the medical and social communities to find the products and services to meet their needs.
Dedicated to improving the lives of all affected by Fragile X syndrome and related conditions. They aim to raise awareness and improve understanding of these genetic conditions by providing a range of services, including family support, community education, advocacy, and fostering research toward treatments and a cure.
Dedicated to effecting practical, meaningful, and lasting changes to enhance the lives of individuals with rare diseases. The organization focuses on improving care, advancing research, and influencing policy to fully support the rare disease community.
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.
Dedicated to improving the lives of those affected by Prader-Willi Syndrome (PWS). The organization provides support to families and individuals dealing with PWS and partakes in advocacy efforts both at a grassroots and legislative level. They endeavor to offer hope and assistance 24/7/365, aiming to help navigate the challenges connected to PWS and make a positive impact in the lives of those dealing with this genetic disorder.
The 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 are provided as needed using sports coaches, unified partners, and volunteers. The Healthy Athletes initiative specifically addresses the health needs of persons with intellectual disability.
Explore Special Olympics CT for Connecticut programs.
Provides advocacy, support, community, and advocacy. The Spina Bifida Association provides ‘A Guide for Medical Professionals.’
Primarily serving Fairfield County, CT, STAR Inc. services over 500 IDD adults and children. Star Inc. comes highly recommended by some of our CT Operation House Call families.
An international membership association established in 1975 and dedicated to inclusive communities through research, education, and advocacy.
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.
A dedicated pediatric hospital. The hospital offers a full spectrum of primary and specialized medical care via world-class experts, serving as a teaching hospital for the Yale School of Medicine. Striving to remain at the forefront of new approaches to diagnosis, treatment, and therapies for children, it provides state-of-the-art medical care. With a robust focus on children’s physical and emotional needs, the hospital organizes care around condition-specific specialty units, each staffed by expert practitioners dedicated to their patients’ healthcare needs.
Autism:
Please scroll to Section 2 below for an expanded list.
Down Syndrome:
Please scroll to Section 3 below for an expanded list.
AANE provides support, community, and resources to adults, children, 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 terminology to the new DSM-5 guidelines.
This organization provides recreational, cultural, and social activities for children with ASD and helps children and families make lasting and meaningful social connections.
The Child Study Center provides various services, including evaluation and therapy.
Located in Stamford, CT, the Seed Autism Center offers evaluation, ABA therapy, Speech and Language therapy, and more.
Autism Society: In 2018, celebrating 50 years of improving the lives of those with autism. Website tabs include many helpful drop-down links and resources under tabs: What is Autism, Living with Autism, and ¿Qué es el autismo?
In 2018, celebrating 50 years of improving the lives of those with autism. Website tabs include many helpful drop-down links and resources under tabs: What is Autism, Living with Autism, and Que es Autismo?
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 who aim to develop best practice models.
The DSACT mission is to improve the lives of people with Down syndrome by promoting equity, opportunities, and inclusion and 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, professionals, and individuals with Down syndrome. Please also see the MDSC below, a strong partner in their work.
The MDSC is a premium support resource for families with Down syndrome. Its policy is “pro-information,” and its reach is national. Though located in Massachusetts, the MDSC provides the northeast US region with support, advocacy, information, and networking for families, friends, professionals, and 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 on its website include important practice information and healthcare guidelines for healthcare practitioners. Please visit: https://mdsc.org/programs/for-healthcare-professionals/
Based in Boston, MA, the program provides multidisciplinary care to people with Down syndrome of all ages, from birth through adulthood.
Provides multidisciplinary care to people with Down syndrome up to age 18.
Founded in 2004, the LuMind organization works closely with other resources on this list. Their research information and initiatives in various healthcare areas interest healthcare professionals. Don’t miss LuMind’s Down Syndrome Clinical Trials information page.
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 USA. The MDSC and DSACT listed above belong to this national organization.
21 Strong is a parent support group active in Fairfield County, providing playgroups, outings, networking, and connections to larger Down Syndrome area events and organizations.
Founded in 1979, the National Down Syndrome Society was established to increase public awareness, assist families, and sponsor scientific research.
Explore important research projects on this site.
The Down Syndrome Consortium is a collaborative research effort under the National Institutes of Health (NIH) to better understand and develop treatments for individuals with Down syndrome. The consortium focuses on all aspects of the condition, including co-occurring conditions, health outcomes, and related problems. By engaging multiple NIH institutes and external organizations, the consortium aims to advance understanding, improve quality of life, and drive significant discoveries to enhance overall health for people with Down syndrome.
Empowering tomorrow’s healthcare professionals with vital skills to improve autism and IDD healthcare.
2024 © Copyright
