The Schrafft Center 529 Main Street, Suite 1M3
Boston, MA 02129
Phone:  (617) 236-7210Fax:  (617) 241-0330Toll-Free:  (800) 331-0688
Primary Contact(s):
Richard Robison (617) 236-7210
Patricia Nemia (617) 236-7210 - Massachusetts
Grant Abstract Summary:
The MAF2F will work with Title V and other stakeholders to help create a statewide coordinated system of care for CYSHCN and their families. MA has many services and supports, but families find them hard to navigate. The F2F will help ensure families can easily access services and supports. The MAF2F will provide 1:1 assistance, and develop workshops and materials to help ensure families have needed skills to partner in decision-making and make informed choices about health care for their CYSHCN.

The MAF2F and its partner organizations will work together to accomplish the five goals listed above in order to meet the needs of families of CYSHCN and help contribute to the improved strategies, policies, and practices of a coordinated, statewide system of care. We will accomplish our goals and objectives by providing expert, up-to-date technical assistance to families, professionals and others who call the Center. We will also host an annual statewide conference, six ½-day regional events, and work with our statewide Parent-to-Parent project to identify cultural brokers. We will continue to host topical conference calls as an alternative learning & networking opportunity for families who cannot travel to in-person events. We will work with a youth group to create a transition workshop for primary care centers so help youth successfully transition to adult systems of care. In collaboration with Spanish-speaking support groups, we will develop a health literacy workshop so families have communication tools to develop improved partnerships with their children’s providers, and model the skills their children will need to take responsibility for their own health needs as they grow up. We will track data, report problems to the appropriate agency and work together to find solutions to increase access to services and supports. In collaboration with Children’s Hospital Boston and NICHQ, we will work to increase medical home competency at primary care locations statewide.
Highlighted Activity:
We have created a very active statewide listserv where families of CSHCN and their professional partners share information, resources, ask questions and learn from each other’s collective experience. Currently over 600 parents/professional participate. Each posting on the list is moderated by staff with the intention of keeping a friendly, positive, and informative tone. At times we ask that some responses be done offline (directly to person posting) to assure confidentiality. Posts are approved by a moderator at least once a day. We also post a “question of the week” to facilitate discussion of a current topic. Community events are also frequently shared. The outcomes have been overwhelming. A recent month had over 250 postings about a wide range of topics such as: a referral to a provider equipped to meet specific needs, tips on how to book appointments to avoid long waits with a specific provider, advice on choosing health coverage when an employer changes plans, questions on how to coordinate Medicaid benefits and private insurance, a conference on Respite care. The listserv helps families and professionals learn more about what is available for a specific child as well as sharing information broadly with others. Families regularly thank us for this resource.
Shared Resources:
Resources are shared by the F2FHICs to help families, other family leaders and partners. While you are welcome to adapt any of the materials for your organization, we ask that you include an acknowledgement of the author/source in your adaptations and that you let the original author know of your use of the materials. Copyrighted materials may not be reproduced or adapted without the express permission of the author.
A brochure that describes the goals, services and supports of Massachusetts Family Voices at the Federation for Children with Special Needs, s family-to-family health information center.
Un folleto informativo para familias de niños con necesidades especiales de cuidado de salud
Um folheto informativo para famílias com crianças com necessidades especiais de saúde
A 1-pager that provides tips for families of CYSHCN in working with a health insurer.
Explanation of why and when your child needs a Health Care Plan, things to include, tips for creating one, and state-specific resources.
An informational brochure on MassHealth, the Massachusetts Medicaid system - information for families raising children and youth with special health care needs
Tips for applying for MassHealth for a child or youth with a disability whose family income is too high for MassHealth Standard.
MA Resource Highlight:
MA Resource Highlight:
What Others are Saying about this F2F HIC:

We have a five year old child on the autism spectrum. To enable our son to fully participate in the community requires maximizing available resources. Understanding, however, the MA public benefits and community resources available to him seemed an insurmountable task. I never could have come to know or navigate these complex systems without the help I received from Mass Family Voices.

On numerous occasions, Mass FV informed me of applicable public benefits and community resources and assisted me in obtaining and accessing them. The project helped me re-obtain benefits when `glitches in the system' dropped our son.

In addition to being a parent of a disabled child, I work in the family court and participate in my school district's special education parent advisory council. In all three capacities, I have been able to share much of the information Mass FV has provided and direct people to the project for further assistance. I personally and professionally know that Mass FV has assisted many families in MA.

- a parent