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Massachusetts Family Voices

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Additional Resources

Disability-Specific

Massachusetts Heart Coalition – An organization of families and other adults committed to the eradication of congenital heart defects.

VHL Family Alliance (von Hippel-Lindau disease) – 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.


Health Care Policy

Health Care For All – 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.

The Disability Law Center – The Protection and Advocacy Agency for Massachusetts. Provide information, referral, technical assistance and representation regarding legal rights and services for people with disabilities.


Medical Resources

Medical Home Initiatives for Children with Special Needs – 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.

National Library of Medicine – Database of medical information including the health care system, access to journals, abstracts and medical records.

National Organization for Rare Disorders – A unique federation of voluntary health organizations dedicated to helping people with rare orphan diseases and assisting the organizations that serve them.

Needy Meds – NeedyMeds’ mission is to be the best source of accurate, comprehensive and up-to-date information on programs that help people facing problems paying for medications and health care; to assist those in need in applying to programs; and to provide health-related education using innovative methods.

University of Massachusetts Medical School, Enhanced Coordination of Benefits-The Enhanced Coordination of Benefits (ECOB) program works with medically complex MassHealth members to ensure medically necessary services are accessible.  They will  identify insurance coverage, assist with the health insurance enrollment process and assist the family and providers with coordinating health insurance benefits.  (800) 462-1120 option 5


National Technical Assistance Centers

The Maternal and Child Health Bureau funds national centers that provide technical assistance to the Family-to-Family Centers (F2Fs) and others to help them work towards each of six national performance measures. Read about each national center below, or download an article about the National Centers (PDF) and the information and resources each provides around one or more of the performance measures.

The National Center for Family/Professional Partnerships for Children and Youth with Special Health Care Needs is a Family Voices project. It helps the Family-to-Family Health Information Centers (F2Fs) and others work toward family/professional partnerships. This ensures families can be partners in decision-making at all levels and will be satisfied with the services they receive. This Center also compiles the data collected by the F2Fs and creates reports.

The National Center for Medical Home Implementation is a project of the American Academy of Pediatrics (AAP). It helps ensure all children, including children and youth with special health care needs (CYSHCN), have access to a medical home. Learn about national and state-specific medical home initiatives. Get tools families can use to manage medical information about their CYSHCN.

The National Center for Hearing Assessment and Management This center provides information and training to families and professionals. It works to expand hearing screening programs. There are links to programs in each state, information about the types of testing used to screen for and identify hearing loss, and family support resources.

The Catalyst Center works to improve health care financing for CYSHCN. This Center is based out of the Boston University School of Public Health. They work with states and other partners to expand health insurance coverage for CYSHCN, close insurance gaps due to underinsurance, and develop and share innovative financing strategies at the state and national level. Please note, they do not provide individual assistance to families around healthcare financing, but will connect you with the F2F in your state. The Web site includes a wide variety of publications, videos, and presentations about healthcare financing. In addition, the Center has developed a State-at-a-Glance Chartbook, a great resource if you are moving and want to learn about health coverage in other states.

The National Center for Community-Based Services creates materials for and works with Title V directors, service providers, and families of CYSHCN to ensure community-based services are easy to access.

Got Transition? is the National Health Care Transition Center. They create health care transition policies, initiatives, and health care transitions tools for professionals, youth, and families to make sure youth and their families receive the support they need to plan for and successfully move from pediatric to adult systems of care.

The National Center for Cultural Competence assists the F2Fs, and others to help ensure programs are designed and implemented to deliver culturally and linguistically competent services to families with children and youth with special health care needs. Visit the Web site to learn about their projects, and get resources and tools. Of particular interest are the self-assessment checklists for providers. Families can also use these checklists as a starting point to develop questions to ask providers and to assess the physical environment of the office to see if the practice will be a welcoming place and that the provider will be a good match for their child.


Parent Support & Advocacy Resources

Massachusetts Act Early Campaign – Free “Learn the Signs. Act Early.” Materials for Parents, Educators & Health Care Providers. Important information about healthy developmental milestones in young children, and are free and downloadable for families, early childhood educators and health care providers.   These materials were developed by the CDC for the national “Learn the Signs. Act Early.” public awareness program, of which the Massachusetts Act Early initiative is the local state chapter.  Where noted, the materials are customized for use in Massachusetts.

Family TIES of Massachusetts, the 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 is a project of the Federation for Children with Special Needs.

Federation for Children with Special Needs, a non-profit, parent-run center that is home to many projects. Staff helps families, professionals, and others navigate systems of services and supports for children and youth with special needs.

PPAL the Parent Professional Advocacy League, is the Massachusetts chapter of the National Federation of Families for Children’s Mental Health. Provides provides leadership, advocacy, outreach, hope and support to families raising children with mental health needs.

Arc Massachusetts – An organization whose mission is to enhance the quality of life for individuals with specific developmental disabilities.

Community Gateway – 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 – A statewide, grassroots coalition of individuals with disabilities and/or chronic illnesses and their families.

Centers for Medicare and Medicaid Services (CMS) – 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.

Family Voices Kids as Self Advocates (KASA) – 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 – 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 – A national initiative to promote and improve the health and well being of infants, children and adolescents.

New England Regional Genetics (NERGG), Inc – 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 – Provides free information, referral and advocacy services for people of any age with disabilities.

Adoptive Families Together – A parent-to-parent network providing support, education and information.


Recreation

Universal Access Program – 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 – 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 – 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 – 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.

Wrights Law – Provides accurate, up-to-date information about special education law and advocacy. Read articles, case law, newsletters, and link to many other resources.


Technology Resources

Easter Seals of Massachusetts – 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) – 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 – Promotes accessibility as well as universal design through education programs, technical assistance, training, consulting, publications and design advocacy.