Intellectual and Developmental Disabilities

What is a Developmental Disorder?

A developmental disorder is a broader term encompassing several disorders. The Diagnostic and Statistical Manual, Fifth edition, (DSM 5), (2013) includes a new chapter about developmental disorders entitled, “Neurodevelopmental Disorders.” The new category includes intellectual disability (Intellectual Developmental Disorder), communication disorders, autism spectrum disorder, attention deficit hyperactivity disorder, specific learning disorder, and motor disorders.

What is Intellectual Disability?

An estimated 3 million Americans have intellectual and developmental disabilities.  Intellectual and developmental disabilities are usually present at birth and limit the growth trajectory of physical, intellectual, and/or emotional aspects of a person’s development.   The term developmental disabilities refers to a broad range of dysfunction in physical, intellectual, and emotional health.   

According to the DSM V (2013), Intellectual Disability can be diagnosed until approximately age 18, and determines a person’s cognitive, intellectual, and practical abilities to perform daily functions. In 2002, the American Association on Mental Retardation listed criteria for diagnosing intellectual disability by identifying factors to assess and inform treatment for intellectual disability.  These factors included limitations in functioning, valid assessment across cultural and linguistic backgrounds, and identifying the type(s) of disabilities in order to find providers who can improve daily functioning.

Resource Organizations » Intellectual and Developmental Disabilities » Framingham

In Massachusetts

Best Buddies Massachusetts

(617) 778-0522

Best Buddies Massachusetts offers One-to-One Friendship, Integrated Employment and Leadership Development programs – positively impacting nearly 56,960 individuals with and without disabilities in Massachusetts.

Boston Center for Independent Living

617-338-6665

BCIL is a 501(c)(3) non-profit organization that has provided services to people with disabilities since 1974, when it became the second independent living center in the country. The organization was created by people with disabilities seeking full integration into society. BCIL accomplishes this by empowering people of all ages with a wide range of disabilities with the practical skills and self-confidence to take control over their lives and become active members of the communities in which they live. At the same time, BCIL engages in advocacy and community organizing to promote access and change within society.

BCIL is a cross-disability organization and works with any person (regardless of age) who identifies as a person with a disability. Our services have no fees, and there is no waitlist. In order to connect with an advocate/skills trainer, please contact our Information and Referral Specialists. They will talk to you about your goals and determine if BCIL’s Direct Services can support you. If you are a service provider, we can arrange to have a BCIL representative come talk with you, your school, hospital or agency about any of our programs, special projects, or services.

Center for Public Representation

617-965-0776 Newton

413-586-6024 Northhampton

202-854-1270 Washington DC

CPR is dedicated to enforcing and expanding the rights of people with disabilities and others who are in segregated settings. CPR uses legal strategies, advocacy, and policy to design and implement systemic reform initiatives to promote their integration and full community participation. Working on state, national and international levels, CPR is committed to equality, diversity and social justice in all its activities.

Commonwealth of Massachusetts

Massachusetts Developmental Disabilities Council outlines helpful resources across the state on Mass.gov.  Mass.gov lists these resources in an easy-to-read grid, with a description and link to each organization. 

Disabilities Resource Network, Jewish Family & Children's Service (JF&CS)

781-693-5640

The Disabilities Resource Network (DRN) is an information and referral service for people with disabilities throughout Greater Boston. The goal of the DRN is to help people with disabilities find programs and services within the community that are accessible and offer opportunities for the fullest level of participation possible. An experienced professional works with callers to find services and programs related to religious life, education, social/recreational, housing, legal/advocacy, vocational, or any aspect of life in the community. This service is non-sectarian and free of charge.

Disability Law Center

(800) 872-9992/(617) 723-8455 Boston

(800) 222-5619/(413) 584-6337 Northhampton

Email: mail@dlc-ma.org

The Disability Law Center (DLC) is the Protection and Advocacy agency for Massachusetts.  DLC is a private, non-profit organization responsible for providing protection and advocacy for the rights of Massachusetts residents with disabilities. DLC receives federal, state and private funding but is not part of the state or federal government.

Family TIES of Massachusetts

800-905-8437

Family TIES of Massachusetts is a program for families of children with special needs and chronic illness, and the professionals who support them. Family TIES offers parent-to-parent support, information and referral services, and workshops to ensure that parents feel confident in caring for their children's special needs. The website offers information about services and supports, as well as personal experiences from early intervention through transition to adulthood. In addition, Family TIES offers regional coordinators who help parents of children with special needs get connected to support groups in their area.

Focus on Vision and Vision Loss

Email: Lisa.DiBonaventura@state.ma.us

The “Focus on Vision and Vision Loss” website is a resource of the MCB/DDS Partnership Project for Orientation & Mobility/Low Vision Services, a cooperative effort between the Massachusetts Commission for the Blind (MCB) and the Massachusetts Department of Developmental Services (DDS).   Partnered since January of 2000, the common goals are to promote healthy vision for all individuals with intellectual disability, raise awareness of needs for those with vision loss, and provide services, resources, training materials and events to help.  MCB and DDS work with not-for-profit organizations creating meaningful collaborations to address the unique needs of individuals.

Massachusetts Act Early

The Massachusetts Act Early Coalition works to strengthen state and community systems for the early identification and intervention for children with signs of developmental disabilities, such as autism spectrum disorders.  The coalition envisions a future that uses a family-centered model that overcomes geographic, socioeconomic, cultural, and linguistic barriers to assure equal access to developmental screening for all children in the Commonwealth. Massachusetts Act Early aims to educate parents and professionals about healthy childhood development, early warning signs of developmental disorders including autism spectrum disorder, the importance of routine developmental screening, and timely early intervention whenever there is a concern.

Massachusetts Mentor

781-407-0470 Dedham

508-824-1355 Taunton

Founded in 1980, Massachusetts MENTOR is a leading home- and community-based human services provider.  They offer innovative programs to children with emotional and behavioral challenges and their families, and to adults and youth with intellectual and developmental disabilities and medically complex needs.  Through a range of personalized supports, Massachusetts MENTOR empowers the individuals and families we serve to learn, grow and thrive.

The mission of Massachusetts MENTOR is to offer adults, children, young people and their families innovative, quality services and supports that lead to growth and independence, regardless of the physical, intellectual or behavioral challenges they face. Massachusetts MENTOR’s philosophy emphasizes partnerships—with those they serve, their families, Massachusetts MENTOR employees, Mentors, payors and the communities in which they work—in an effort to help people shape the direction of their own lives in community-based settings.

New England Index: Information on Disabilities Exchange

781-642-0248

Toll Free: 800-642-0429

TTY: 800-764-0200

Information clearinghouse for people with disabilities. Includes database of disability programs and services in MA; fact sheet library on disabilities; recent local and national news about disabilities; and info on multicultural competency. Interested parties can also submit a request online or call the phone numbers above for specific resources in their area.

INDEX helps people with disabilities find the information they need. They collect and keep up-to-date information on programs, providers and services in Massachusetts that have something to offer to people with disabilities. INDEX is a project of the Eunice Kennedy Shriver Center at the University of Massachusetts Medical School.

 

Partners for Youth with Disabilities

617-566-4075

Email: info@pyd.org

Partners for Youth with Disabilities, Inc. (PYD) is committed to empowering young people with disabilities to reach their full potential for personal development. They do this by providing high quality one-to-one and group mentoring programs where adult mentors with disabilities act as positive role models and provide support, understanding and guidance for youth as they strive to reach their personal, educational and career goals.

At PYD, they work to illuminate and nurture the power and potential of all youth with disabilities. PYD currently offers six programs serving youth with disabilities, all of which use positive youth development and social-emotional learning as tools to foster growth

Special Olympics Massachusetts

+1 (508) 485-0986

Special Olympics is a global organization that serves athletes with intellectual disabilities working with hundreds of thousands of volunteers and coaches each year. Since the establishment of Special Olympics in 1968, the number of people with and without intellectual disabilities who are involved with the organization has been growing, but the unmet need to reach more people with intellectual disabilities is staggering. 

Special Olympics provides year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities. Those activities give them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship.

The Commonwealth of Massachusetts Disabled Persons Protection Commission (DPPC)

617-727-6465 x 211

888-822-0350 V/TTY

The mission of the Disabled Persons Protection Commission (DPPC) is to protect adults with disabilities from the abusive acts or omissions of their caregivers through investigation, oversight, public awareness and prevention.The DPPC is an independent state agency and the jurisdiction of DPPC includes adults with disabilities between the ages of 18 and 59, who are within the Commonwealth whether in state care or in a private setting and who suffer serious physical and/or emotional injury through the act and/or omission of their caregivers. The DPPC fills the gap between the Department of Children and Families (DCF) (through the age of 17) and the Executive Office of Elder Affairs (EOEA) (age 60 and over).

The Paul Center for Learning and Recreation

978-256-4396

The Paul Center is dedicated to assisting individuals with disabilities in developing their maximum potential and independence. They accomplish this goal by providing services to the individual as well as to the family. The Board of Directors and staff of The Paul Center believe that through consistent quality programming they can and do provide an optimal educational and recreational experience needed by their students. The Paul Center stresses with their staff the importance of establishing and maintaining a "spirit of extended family" with students. This spirit transcends all aspects of the programs and continues to be a significant factor in the success with their students.

The Price Center

617-244-0065

Email: info@thepricecenter.org

For forty years, individuals with intellectual and developmental disabilities and their families from throughout the greater Boston area have relied on The Price Center for residential, day habilitation and employment programs that foster clients’ self-confidence and maximize their physical, emotional and intellectual capabilities.

UMASS Eunice Kennedy Shriver Center

774-455-6562

The mission of the Eunice Kennedy Shriver Center is to advance local, national and international efforts to improve the quality of life for individuals with intellectual and developmental disabilities (IDD) and their families.

To that end, The Shriver Center carries out research to understand environmental and biological processes that influence behavioral development.

In parallel and in collaboration, they carry out IDD-relevant programs of technology and information dissemination, education and training, technical assistance, and clinical service.

Understanding Our Differences

617-559-6075

Understanding Our Differences, Inc. is a nonprofit organization working to increase information, understanding and acceptance of people with disabilities and individual differences in schools. Since 1978, Understanding Our Differences has touched the lives of thousands of children and adults in Newton, Massachusetts through the delivery of a unique and creative disability awareness curriculum in collaboration with the Newton Public Schools. This award-winning program has been disseminated to more than 200 schools and organizations nationwide.

Outside Massachusetts

Organizations with hotlines

Feingold Foundation

1-631-369-9340

(631) 369-9340

Email: help@feingold.org

The Feingold Association is a non-for profit organization founded in 1976. Mission: To increase public awareness of the effect of foods and additives on behavior, learning and health. It is an elimination diet that helps you find out if certain foods or artificial additives are triggering the problems you are seeing. If you see positive results once you have gotten rid of those chemicals then you simply continue to eat the foods you enjoy that are free of them.  Happily, there is a huge selection of brand name foods of all kinds, including snacks, desserts, drinks, convenience foods and mixes that are acceptable. Parents also reported major changes in a child’s schoolwork and in many other areas. Over the years Dr. Feingold found that many other problems improved when people stopped eating things like food dyes. The Feingold Association continues to collect feedback from families who have reported a wide range of improvements.

Organizations without hotlines

American Association on Intellectual and Developmental Disabilities

202-387-1968

Since 1876, the American Association on Intellectual and Developmental Disabilities (AAIDD) has been providing worldwide leadership in the field of intellectual and developmental disabilities. AAIDD is a powerful community of leaders with a strong voice and important mission.

AAIDD, (formerly AAMR -- American Association on Mental Retardation) is the oldest and largest interdisciplinary organization of professionals and citizens concerned about intellectual and developmental disabilities.

AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities.

CDC: National Center on Birth Defects and Developmental Disabilities

800-232-4636

The mission of the CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) is to promote the health of babies, children and adults and enhance the potential for full, productive living. To achieve its mission, the Center works to identify the causes of birth defects and developmental disabilities; help children to develop and reach their full potential; and promote health and well-being among people of all ages with disabilities, including blood disorders. The NCBDDD site features an informational "A-Z index" of birth defects, blood disorders, and disabilities. The infant health and child development section discusses pediatric mental health topics such ADHD, Autism Spectrum Disorder, Intellectual Disability, and Down Syndrome.

 

 

Cerebral Palsy Group

407-501-5056

Cerebral Palsy Group is an online resource for anyone who has been affected by cerebral palsy, birth injuries, or brain injuries. Their team was created so we can provide answers and all types of assistance needed to help improve the quality of life for loved ones and family members with cerebral palsy.

Disability and Abuse Project

(818) 230-5156

Email: nora@disability-abuse.com

The focus of this organization is to help prevent the physical, sexual, and emotional abuse of people with developmental or intellectual disabilities. Their mission is to disseminate information on how to reduce the risk of abuse, to promote healing for victims, and to seek justice for those who have been victimized. The Disability and Abuse Project is a function of Spectrum Institute, a nonprofit educational corporation.  The Project works with nonprofit organizations, media, government agencies, and individual advocates. The website contains information on books and resources relevant to issues involving disability and abuse.

Kids Together, Inc.

The goal of Kids Together is to remove barriers that exclude people with disabilities. Kids Together supports the belief that children with disabilities, like all children, have the need to be welcomed, cherished and embraced in our communities. To this end, the organization provides information, resources, educational materials and trainings on inclusion and disabilities for parents, teachers, school administrators, service providers, businesses, therapists, recreational facilities and others. It also educates the public about inclusion and its benefits for everyone, and demonstrates inclusive practices through various community events. Kids Together offers an online networking community and free nationwide listserv.

National Disability Rights Network

202-408-9514

Email: info@ndrn.org

National Disability Rights Network (NDRN) is the nonprofit, voluntary membership association for the Protection & Advocacy (P&A) and Client Assistance Program (CAP) agencies. Collectively, the network is the largest provider of legally based advocacy services to people with disabilities in the United States.

Sibling Support Project

206-297-6368

Email: info@siblingsupport.org

The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. The Sibling Support Project believes that disabilities, illness, and mental health issues affect the lives of all family members. Consequently, they want to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents' and providers' understanding of sibling issues. The mission is accomplished by training local service providers on how to create community-based peer support programs for young siblings; hosting workshops, listservs, and websites for young and adult siblings; and increasing parents' and providers' awareness of siblings' unique, lifelong, and ever-changing concerns through workshops, websites, and written materials. Visit the website for local listings of "Sibshops", i.e. sibling support programs.

The Center for START (Systemic, Therapeutic, Assessment, Resources, and Treatment) Services

(603) 228-2084

Email: start.iod@unh.edu

The Center for START Services at the Institute on Disability/UCED at the University of New Hampshire is a national initiative that works to strengthen efficiencies and service outcomes for individuals with intellectual and developmental disabilities (IDD) and behavioral health needs in the community.

The START program model was implemented in 1988 by Dr. Joan Beasley and her team to provide community-based crisis intervention for individuals with IDD and mental health needs. The model is evidence-informed and utilizes a national database. It is a person-centered, solutions-focused approach that employs positive psychology and other evidence-based practices.  

START is a comprehensive model of service supports that optimizes independence, treatment, and community living for individuals with IDD and behavioral health needs. In the 2002 U.S. Surgeon General’s Report on mental health disparities for persons with intellectual/developmental disabilities, START was cited as a model program. In 2016, the START model was identified as best practice by the National Academy of Sciences Institute of Medicine.

The National Association for the Dually Diagnosed

(845)331-4336

Email: info@thenadd.org

NADD, also known as The National Association for the Dually Diagnosed, was founded in 1983 as a not-for-profit Association. The catalyst for the founding of NADD arose from the need for an open forum to promote and exchange of ideas, principals & concepts concerning individuals who have the co-existence of  ID/D and mental illness.