This page allows you to find information about

Massachusetts Family Voices

http://www.massfamilyvoices.org/

Contact Information

Beth Dworetzky
617-236-7210 ext. 210 (message
massfv@fcsn.org

Mass Family Voices (Mass FV), a project of the Federation for Children with Special Needs (FCSN), is currently funded through a 2004 CMS grant as a Family-to- Family Health Care Information and Education Center. Staff provides information about the MA public benefits system and medical advocacy support to families with children and youth with special health care needs (CYSHCN). Mass FV offers support to families and professionals through a variety of venues: direct contact, a listserv, a website, a lending library, newsletter articles, topical conference calls, trainings, and through an annual parent leader conference.

Patti Hackett and participants at Joining Voices HIGHLIGHT: Joining Voices Parent Leader Conference
This annual conference is an opportunity for parents of CYSHCN to learn advocacy and leadership skills and to network with other families throughout the Commonwealth. The highlight of Joining Voices 2006 was keynote speaker, Patti Hackett, Co-Director of the Health and Ready to Work National Resource Center. Patti’s presentation, “Preparing for Life: Survive & Thrive!” was a humorous, poignant and inspirational discussion about strategies families can use to move forward when the dreams they had for their child had to change. Participants attended a variety of afternoon workshops to learn strategies to advocate for quality health care services not only for their child, but also for all children with special health needs. Although family leaders actively discuss issues, and support one another through the Mass FV listserv, there is nothing quite like the excitement and synergy generated when parents of CYSHCN get together in person.

“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

WORKING TOGETHER FOR CYSHCN:
Last year, Mass Family Voices developed a key partnership with the MA Department of Public Health, Office of Oral Health, to ensure family participation in the development of a MA Oral Health Action Plan for CYSHCN. In this activity, Mass Family Voices helped tailor the statewide oral health forums to accommodate families' schedules; worked with the Department to arrange stipends for families to attend; and posted the forum questions to the project website and listserv so families would have alternative ways to participate in lieu of attending the forums. Finally, Mass Family Voices used its extensive networks to distribute the plan for families’ feedback, which the Office of Oral Health incorporated into the final version.

Useful Links

Massachusetts

Back to FV in Your StateFamily Voices in Your State

LAC


En Español

home | about us | contact us | donate |