We list examples of excellent resources for Massachusetts’ families and professionals, separated into three sections:
The primary purpose of The Arcs, nationally, is the promotion of the general welfare of persons with developmental disability and their families. Massachusetts has 17 Arcs. The Arc of Mass hosts Operation House Call. Local Arc chapters provide a variety of services, which vary from one Arc to another, which might include social and recreation and job opportunities, workshops, public education, parent and sibling support groups, advocacy support, respite, and more. (See The Arc of Mass. listing below.)
In addition to its legislative advocacy and community services, The Arc of Mass. partners with BUSM, Tufts, and Simmons to provide the Operation House Call Program. Maureen Wallace, journalist, and parent, writes about the program:
http://www.sheknows.com/parenting/articles/990483/operation-house-call-teaches-compassion-for-people-with-special-needs
The AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities.
Apraxia Kids is the leading nonprofit that strengthens the support systems in the lives of children with apraxia of speech.
Autism: Please scroll down to Section 2 for an expanded list.
Cerebral Palsy: View these websites: United Cerebral Palsy and American Academy for Cerebral Palsy and Developmental Medicine.
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: Please scroll down to Section 3 for an expanded list.
Early Intervention (EI): see Family TIES below.
Family TIES (Together In Enhancing Support) serves as the Central Directory for Early Intervention services in Massachusetts. It is also a statewide information and support network for families of children with disabilities, special health care needs, or chronic illnesses. Parent Coordinators are located at the Mass. Dept. of Public Health Regional Offices. Provides resource book: Resources for Families of Children with Special Needs. Tel: 1-800-905-TIES (8437)
The Federation of Mass provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities through such services as its newsletter, web page, publications, phone consultation, conferences, workshops, and many others. Tel: (617) 236-7210, (800) 331-0688, (617) 236-7210 (TTY)
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 practices, resources, planning, research, and current events.
We achieve our vision and mission with the support and focus on our Community through four strategic priority areas: Advocacy, Education, Research, and Treatment.
Provides information on disabilities and related issues, focusing primarily on ages 0-22.
A full-service, mission-driven nonprofit reimagining a future where every person with a rare disease and their families live their best lives.
Information about disabilities, Massachusetts’ programs, services, and providers.
Dedicated to enhance the quality of life of and empower those affected by Prader-Willi syndrome.
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 with the use of sports coaches, Unified Partners, and volunteers. The Healthy Athletes initiative specifically addresses the health needs of persons with intellectual disability. Special Olympics of Massachusetts (SOMA): www.specialolympicsma.org
Provides advocacy, support, community, and information.
An international membership association established in 1975 and dedicated to inclusive communities through the use of research, education, and advocacy. 1025 Vermont Ave, Floor 7 Washington, DC 20005 Tel: 202-263-5600
The most comprehensive resource for people and families living with Williams syndrome, as well as doctors, researchers, and educators.
1881 Worcester Road, Framingham, MA 01701
Tel: 508-652-9900 email: webmaster@autismalliance.org .
For families and professionals, providing resources, programs, information, and support. Training resources available to professionals.
85 Main Street, Suite 3, Watertown, MA 02472
(617) 393-3824
AANE helps Autistic, and similarly Neurodivergent people build meaningful, connected lives. They provide individuals, families, and professionals with education, community, and support in an inclusive atmosphere of validation and respect.
Launched in 2021 and supported by Autism Speaks, Autism Care Network is a learning health network for autism.
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 provided on its website include important practice information and healthcare guidelines for healthcare practitioners. Please visit: https://mdsc.org/programs/for-healthcare-professionals/
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.
Provides multidisciplinary care to people with Down syndrome of all ages, from birth through adulthood.
LuMind IDSC serves as a bridge between the Down syndrome community and the research community. The 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.
Founded in 1979, the National Down Syndrome Society was established to increase public awareness, assist families, and sponsor scientific research.
The program is one of the oldest and largest of its kind, offering multidisciplinary health care for children, adolescents, and young adults with Down syndrome from birth until they reach age 22. With each appointment, we are also able to make referrals and connections with other specialty clinics at Boston Children’s.
NIH, part of the U.S. Department of Health and Human Services (HHS), is the nation’s biomedical research agency. NIH’s research portfolio on Down syndrome includes efforts to understand all aspects of the condition, including related health problems and health outcomes.
Empowering tomorrow’s healthcare professionals with vital skills to improve autism and IDD healthcare.
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