Link Categories

Parent Support & Advocacy Resources

Family TIES - http://www.massfamilyties.org
A statewide, parent-run information, resource, referral and parent-to-parent network for families of children with disabilities, special health care needs or chronic illnesses, and professionals.
Federation for Children with Special Needs - http://www.fcsn.org
A coalition of parent groups representing children with special needs and their families.
PAL - www.ppal.net
The Parent/Professional Advocacy League provides leadership, advocacy and support to families of children with mental health needs.
Arc Massachusetts - http://www.arcmass.org
An organization whose mission is to enhance the quality of life for individuals with specific developmental disabilities.
Community Gateway - http://www.communitygateway.org
An organization that provides families, individuals and professionals in the Central Massachusetts community with a gateway to quality local and worldwide disability resources and events.
Massachusetts Families Organizing for Change - http://www.mfofc.org
A statewide, grassroots coalition of individuals with disabilities and/or chronic illnesses and their families.
Parents For Residential Reform - www.pfrr.org
A grassroots, family-to-family support network for parents of children with special needs, whose children require intensive residential educational settings.
Family Village - http://www.familyvillage.wisc.edu/index.htmlx
A global community that integrates information, resources and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide services and support.
Centers for Medicare and Medicaid Services (CMS) - http://cms.hhs.gov/
A federal agency within the United States Department of Medicare and Medicaid programs and the State Children's Health Insurance Program (SCHIP), a program that is expected to cover many of the uninsured children in the United States.
The National Information Center for Children and Youth with Disabilities (NICHCY) - http://www.nichcy.org"
Provides Information on disabilities and disability related issues for families, educators and other professionals; focuses specifically on children and youth up to age 22 .
Family Voices Kids as Self Advocates (KASA) - http://www.fvkasa.org"
An organization created by youth with disabilities to educate society about issues concerning youth with a wide spectrum of disabilities and special health care needs.
Family Voices - http://www.familyvoices.org
Consists of families from throughout the United States who have children with special health needs, as well as caregivers, professionals and friends whose lives have been touched by these children and their families.
Bright Futures - http://www.brightfuturesforfamilies.org
A national initiative to promote and improve the health and well being of infants, children and adolescents.
Massachusetts Heart Coalition - http://sheri_turner.tripod.com/massachusettsheartcoalition/"
A national initiative to promote and improve the health and well being of infants, children and adolescents.
New England Regional Genetics (NERGG), Inc - http://www.nergg.org
A non-profit organization that serves as a consortium throughout New England for genetic service providers, representatives of the public health community, and individuals whose lives are affected by genetics disorders or have an expressed interest in genetics.
Mass Office on Disability - http://www.state.ma.us/mod/
Provides free information, referral and advocacy services for people of any age with disabilities.
Massachusetts Hospital School Family Outreach - http://www.geocities.com/mhsfamilyoutreach
Provides support for Massachusetts Hospital School families, but links to financial assistance, helpful products and other resources are of interest to all families of children with special health needs.
Care Points - http://www.carepoints.org
A parent-professional partnership to improve and maximize care for medically complex children and their families. Provides resources and supports for parents, caregivers, and health care professionals.
Adoptive Families Together - http://www.carepoints.org
A parent-to-parent network providing support, education and information.

Technology Resources

Easter Seals of Massachusetts - http://www.EasterSealsMa.org
Expanding independence for people with disabilities. In addition to assistive technology, Easter Seals provides therapy and school to work services for children with disabilities.
Center for Applied Special Technology (CAST) - http://www.EasterSealsMa.org
An educational, not-for-profit organization that uses technology to expand opportunities for all people, including those with disabilities.
New England ADA Technical Assistance Center - http://www.adaptenv.org
Promotes accessibility as well as universal design through education programs, technical assistance, training, consulting, publications and design advocacy.

Medical Resources

National Library of Medicine - http://www.rarediseases.org
Database of medical information including the health care system, access to journals, abstracts and medical records.
National Organization for Rare Disorders - http://www.nlm.nih.gov
A unique federation of voluntary health organizations dedicated to helping people with rare orphan diseases and assisting the organizations that serve them.
Medical Home Initiatives for Children with Special Needs - http://www.medicalhomeinfo.org
The goal of this program is to ensure that children with special needs have a medical home where health care services are accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally competent.

Health Care Policy

Health Care For All - http://www.hcfama.org
This organization is committed to building a movement of empowered people and communities with the goal of creating a health care system that is responsive to the needs of all people.
New England SERVE - http://www.neserve.org
A health policy, research and planning organization that works to promote quality health systems for children with special health care needs and their families.

Disability-Specific

VHL Family Alliance (von Hippel-Lindau disease) - http://www.vhl.org
VHLFA is the only national and international organization dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by von Hippel-Lindau disease (VHL). Staffed almost entirely by volunteers world-wide, the organization funds research, and provides telephone support and medical networking for families and physicians dealing with this complex disorder. There is a patient Handbook, a toll-free telephone hotline, a website, online discussions in four languages, and a quarterly newsletter. International support groups provide information and support in at least twelve languages. $25/year membership is requested, not required. No one is denied service.

Recreation

Universal Access Program - http://www.mass.gov/dcr/universal_access/index.htm
The Division of State Parks and Recreation's Universal Access Program is dedicated to providing free, family-oriented outdoor recreation opportunities in Massachusetts State Parks for visitors of all abilities. Accessibility to our State Parks is achieved through site improvements, specialized adaptive recreation equipment (provided, along with staff and instruction), and accessible recreation programs. Visit this site to find recreation opportunities and a schedule of events.
Outdoor Explorations - hhttp://www.outdoorexplorations.org
Offers outdoor activities for people of all abilities that foster community-wide inclusion, personal growth and social change.

Special Education

Parent Training and Information Center (PTI) @ Federation for Children with Special Needs - http://www.fcsn.org/education/education.html
A federally funded project that empowers parents to become active participants in improving the quality of special education services for their children. Offers many free workshops throughout the state, and provides technical information and support.
MASSPAC - Massachusetts Association of Special Education Parent Advisory Councils - http://www.masspac.org
The mission of MASSPAC is to maintain a state-wide network of parents, professionals, and school-based councils in a shared effort to understand, respect, and support appropriate education for all children with special needs in our respective communities.