Examples of Web Resources For Mass Families and Professionals:
We list examples of excellent resources for Massachusetts families and professionals separated into three sections: 1. General & Diagnosis Specific Resources. 2. Autism. 3. Down Syndrome. (There are separate sections for Autism and Down syndrome as there are so many resources available.)
1. General & Diagnosis Specific Resources:
The Arc of the United States: (www.thearc.org)
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.)
The Arc of Massachusetts: (www.arcmass.org) 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 . Relevant publications by Amanda Nichols MSW, Former Director of Health Care Policy at The Arc of Mass. include:
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: Please 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: Please scroll down to Section 3 for expanded list.
Early Intervention (EI): see Family TIES below.
Family TIES of Massachusetts: www.massfamilyties.org 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)
Federation for Children with Special Needs (FCSN): www.fcsn.org
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 practice, resources, planning, research and current events.
Mass. Family Voices: www.massfamilyvoices.org
Massachusetts Family Voices is a state chapter of Family Voices, a national grassroots organization of families and friends speaking on behalf of children and youth with special health care needs. Mass Family Voices hosts a statewide list serv and provides information about access to public health benefits programs, including Mass Health.
National Fragile X Foundation (US): https://fragilex.org/
National Information Center for Children and Youth with Disabilities (NICHCY): www.nichcy.org
Provides information on disabilities and related issues, focusing primarily on ages 0-22
National Organization for Rare Disorders (NORD): www.NORD-RDB.com
New England Index: www.disabilityinfo.org
Information about disabilities, Massachusetts’ programs, services and providers.
Signing Savvy: www.signingsavvy.com
Most complete online American Sign Language dictionary with several thousand videos.
Special Olympics: www.specialolympics.org
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 innitiative specifically addresses the health needs of persons with intellectual disability.Special Olympics of Massachusetts (SOMA): www.specialolympicsma.org
Spina Bifida Association: http://spinabifidaassociation.org/
Provides advocacy, support, community and advocacy.
For professionals the Spina Bifida Association offers:
An international membership association established in 1975 and dedicated to inclusive communities though the use of research, education and advocacy.
1025 Vermont Ave, Floor 7
Washington, DC 20005 Tel: 202-263-5600
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. 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.
2014 Autism Key Findings and Facts:
Anna Almendrala of the Huffington Post, 2014 summarizes key findings from The Harvard Review of Psychiatry (March 2014) in a brief article. The article has a 12 Facts about Autism with useful links.
The Autism Alliance of MetroWest, Inc.
14 East Central Street
Natick, Massachusetts 01760
Tel: 508-652-9900 email: firstname.lastname@example.org.
For families and professionals, providing resources, programs, information and support. Training resources available to professionals.
Autism and PDD Support Network: www.autism-pdd.net
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 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?
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:
Massachusetts Down Syndrome Congress:
The MDSC is a premium support resource for families with Down syndrome. It’s 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 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/
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.
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 Society (NDSS):
Founded in 1979 the National Down Syndrome Society was established to increase public awareness, assist families, and sponsor scientific research.
The Down Syndrome Research and Treatment Foundations (DSRTF): Visit this site to explore a wide variety of important research projects.