Hunting Pre-Cancerous Cells in the Esophagus

Powerful Patient, 2009 Week 7

Host: Joyce Graff, http://powerfulpatient.org, editor@vhl.org 800-767-4845

Beginning February 9, 2009 Listen Program guide for this show

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Joyce talks with Beth Dworetzky of the Family to Family Health Information Center in Massachusetts.  There are 41 such centers in the 50 states, and more coming by June 2009.  This is the best starting place to find help in navigating the system.

About Our Guest

Beth Dworetzky is the Project Director for the Massachusetts Family to Family Health Information Center, which is a project of the Massachusetts Family Voices at the Federation for Children with Special Needs.  She is also a parent of a child with special needs.

As Beth says, she, like most parents, has a chapter in her life called “Why didn’t anyone ever tell me??”  It is her mission in life to help other families learn what they need to know to navigate the system, discover the services that exist for which they may be eligible, and make sure that their loved ones get the services they need to maximize their potential.

While these offices are designed primarily to help families with children up to age 22, they are a great resource for people with special needs at any age, whether temporary or permanent.

MASSACHUSETTS: Mass Family Voices @ Federation for Children with Special Needs
Address: 1135 Tremont Street • Suite 420 • Boston, MA 02120
Phone: Toll free in MA: (800) 331-0688 x.210 • Messages only:(617) 236-7210 • Fax: (617) 572-2094
Primary Contacts: Beth Dworetzky,
Rich Robison, Phone: (617) 236-7210

About the Family to Family Health Information Centers

The best place to start is on the Family Voices website: http://familyvoices.org

Click on the box for the “National Center for Family/Professional Partnerships”.  On the next page, on the left-hand side, click on “Family to Family Centers in the States.” In the discussion of “How do F2F HIC’s help?” you will find the “The list of currently funded F2F HICS is available on our Grantees page.”

Click on the “grantees” link to find the list of state-level centers. 
http://www.familyvoices.org/info/ncfpp/grantees.php

Many services vary by state, so it is best to begin discussing your options with someone in your state.

These centers are best prepared to advise you about Parent Training and Education (PTI) programs, and Early Intervention programs to help young children whose skills don’t come naturally.  These programs not only help the children, they help the parents to connect to other families and find support.

About the Parent to Parent Network

The Parent to Parent network is another national organization that helps to connect families with similar challenges so that they can share ideas.  http://www.p2pusa.org

About the Massachusetts F2F HIC (similar services exist in 41 states)

The MA Family-to-Family Health Information Center, a project of Mass Family Voices, is funded by a grant from the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Division of Services for Children with Special Health Needs. This parent-run center provides free technical assistance to families with children and youth with special health needs, and others. Contact us for information about:

• Masshealth [Medicaid] and other health care financing options
• Health care services and supports for children and youth with special health needs and their families
• Information about collaborating with others to address barriers to health care
• Participating in opportunities to improve systems of care for children and youth with special health care needs

See http://www.massfamilyvoices.org/
Or http://www.familyvoices.org/info/ncfpp/grantees.php to find the service in your state.