This information listed is provided to assist in locating possible resources. By publishing the names of these agencies and organizations, the Disability Commission does not take
responsibility for the quality or suitability of these services and does not recommend the
use of these services in preference to those which are not listed.
Mass Families Organizing for Change (MFOC): https://www.mfofc.org
MFOC is a statewide grassroots coalition of individuals with disabilities and/or chronic illnesses and their families. They provide support and leadership trainings. “Advocacy Bootcamp,” “Family Leadership Series” and “A Full Life Ahead” are the hallmark programs that MFOC sponsors.
Massachusetts Department of Elementary and Secondary Education (DESE): http://www.doe.mass.edu
DESE oversees the special education state regulations and the standardized testing, including MCAS tests in the public schools.
Massachusetts Department of Developmental Services (DDS): https://www.mass.gov/orgs/department-of-developmental-services
“The Mission of DDS is to create in partnership with others, innovative and genuine opportunities for individuals with intellectual and developmental disabilities to participate fully and meaningfully in and contribute to their communities as valued members.”
DDS requires an application for eligibility which can be found on their website in order to access their services. DDS also services children and youth that have conditions that “results in substantial functional limitations,” including Williams Syndrome, Prader-Willi Syndrome, Down Syndrome, Fetal Alcohol Syndrome and Fragile X Syndrome. DDS also offers supports for residential, families, respite care and transportation.
Mass Commission for the Blind: www.mass.gov/mcb
MA Commission for the Blind (MCB) provides quality rehabilitation, vocational, and social services to Massachusetts residents who are blind, visually impaired, or deaf blind, leading to their independence and full community participation. MCB also serves individuals who are qualified as having low vision with a progressive visual impairment.
Massachusetts Commission for the Deaf and Hard of Hearing (MCDHH):https://www.mass.gov/orgs/massachusetts-commission-for-the-deaf-and-hard-of-hearing
MCDHH provides leadership, education, and advocacy services to support those who are deaf, late deafened, and hard of hearing to receive equitable opportunities. They also provide support to family members.
Northeast Arc: https://ne-arc.org/
The purpose is to help those with disabilities and their families with support and programming to guide the clients to be included in life. The Northeast Arc provides programs from infancy to Early Intervention and through adulthood. The adult services include vocation skills, activities of daily living and residential support.
Asperger Autism Network (AANE): https://www.aane.org/
AANE provides services, education and support to students, families and professionals. There are support groups, social opportunities, resources to help with school services, educational workshops, and post high school and adult services.
Massachusetts Down Syndrome Congress (MDSC): https://mdsc.org/index.cfm
MDSC’s Mission Statement is “To ensure individuals with Down syndrome in Massachusetts are valued, included and given opportunities to pursue fulfilling lives by providing information, networking opportunities, networking opportunities and advocacy for people with Down syndrome and their families, educators, health care professionals, and the community-at-large.”
Ehlers Danlos Society & Hypermobility Spectrum Disorders (EDS): https://www.ehlers-danlos.com/
The Ehlers-Danlos Society is a global community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions. EDS is proudly working to provide global learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population: Giving HOPE to all those whose lives are affected by EDS and HSD.
Parent Professional Advocacy League (PPAL): http://ppal.net/
PPAL is a statewide organization that provides monthly workshops on the second Tuesday of each month for parents, caretakers and professionals who work with individuals with mental health issues. Their purpose is to improve the mental health and well-being of all by providing education, advocacy and support.
Eliot Community Services: http://www.eliotchs.org/services/
Eliot provides mental health services for both young people and adults. The Child Program is from the CBHI (Children’s Behavioral Health Initiative). CBHI includes the following services: Intensive Care Coordination, Family Support and Training, In-Home Therapy, Therapeutic Mentoring, Outpatient Therapy and Psychiatry, and Mobile Crisis Intervention. Eligibility is based on insurance. Eliot Adult Services include Vocational and Day Services, Respite Services, Community Based Housing options to help balance daily living social and vocational skills.
National Alliance on Mental Illness: Massachusetts (NAMI): https://namimass.org/
NAMI provides programs throughout the State to support individuals struggling with mental health as well as family members and community organizations. NAMI also has the Criminal Justice Diversion Project (CJDP) whose goal is to help prevent unnecessary arrests and detention of individuals with mental illness. The CJDP also supports first responders in working with those with mental illness.
Nan Project: https://namimass.org/
Nan Project provides “Peer Mentoring” training, community programming and resources for those struggling with mental health and contemplating suicide. They use a peer-to-peer model to normalize the conversation around mental health. These conversations are with young people, mental health professionals, and educators.
Families for Depression Awareness: http://familyaware.org/
This group helps all ages with the dealing with the dynamic of depression and bipolar disorder. They provide services and education to help people cope and to prevent suicides. They also have a link for “Workplace Stress.” The role of the caregiver as well as the individual are all addressed with this link.
Department of Mental Health (DMH): https://www.mass.gov/orgs/massachusetts-department-of-mental-health
DMH is a state-funded agency that provides resources to young people and adults with severe and persistent mental health illness. To receive DMH services, one must have a mental health diagnosis and found eligible for home and community services. This link has the area office contacts. DMH is not an entitlement such as special education, and individuals have to fill out an application.
Maple Sugar Urine Disease: https://msud-support.org/introduction/overview
Maple Sugar Urine Disease (MSU) is an inherited metabolic disorder that can lead to physical disabilities and possibly death. This website provides a quarterly newsletter, research, and family support.
National PKU (Phenylketonuria) Alliance: https://npkua.org
PKU is an inherited metabolic disorder that affects the brain with increased levels of an amino acid (Phe) in the protein. A person diagnosed with this is prescribed a diet low in Phe. Phe is found in all proteins and artificial sweeteners. This website contains medical information and research as well as many other resources.
HCU Network America: https://hcunetworkamerica.org
Homocystinuria is elevation of the amino acid, homocysteine (protein building block coming from our diet) in urine. Homocysteine can also be elevated in blood. Patient support, medical referrals and education are included in this website.
Organic Acidemia Association: https://oaanews.org
A group of inheritable metabolic disorders in which there is a defect in protein metabolism where an essential enzyme is absent or malfunctions. They sponsor events throughout the country, have a patient registry, provide information about newborn screenings and updated medical research.
National Organization for Rare Diseases: https://rareaction.org/resources-for-advocates/state-profiles/massachusetts/
This is a patient advocacy organization that works with individuals having rare diseases in conjunction with over 280 patient organizations. Together they work to provide education for the identification, the treatment and cure of many rare diseases.
National Urea Cycle Disorders Foundation (UCD): http://nucdf.org/
UCD in Common https://www.ucdincommon.com/
A Urea Cycle Disorder is a genetic disorder caused by a deficiency of one of the enzymes in the cycle that removes ammonia in one’s blood stream and can affect newborns, children and adults. This website provides support and research.
Fatty Oxidation Disorders (FOD): http://fodsupport.org
Fatty Oxidation Disorders include metabolic deficiencies where a person’s body cannot break down fatty acids to produce energy. This website includes information for newborn screenings, clinical references and a list of over 20 disorders caused by FOD.
Dyspraxia Foundation: https://www.dyspraxiausa.org/
Dyspraxia is a neurological disorder in the brain that causes life-long impaired cognitive skills such as motor, memory, judgement, and processing. It also affects the central nervous system and the immune system. Dyspraxia can be diagnosed in conjunction with other diseases.