Spring 2001 Newsletter  |  to Bottom of Page links
 
Family Voices in Vermont
A family support program of Parent to Parent of Vermont providing health information.

Parent Leadership Conference
Governor's Commission on Health Care
Power Outages, Disasters
Under Development... A new resource
Add Your Voice


 

Governor's Bipartisan Commission on Health Care Availability and Affordability Seeking Input from Families on Health Care in Vermont 

Parent Leadership Conference If you would like to learn more about becoming a more active advocate, the 2 day parent leadership conference now being planned for mid-October by the New England Region of Family Voices might be for you. The retreat, funded by Family Voices, will be held at Paul Newman's Hole in the Wall Gang Camp in Connecticut. Our hope is that families who participate will be interested in serving on advisory boards related to special needs or participate in legislative activities. Call Kay Van Woert at 985-5668 if you would like more information.
We have a wonderful new opportunity to add our voices, concerns, and suggestions about health care in Vermont to the work of the Governor's Bipartisan Commission on Health Care Availability and Affordability. This group is actively soliciting information from families, employees and employers, health care professionals, and insurance systems regarding the health care system in our state. The Governor has asked the commission to study data and information about health care costs and availability, to identify ways to control costs and guarantee universal health care access, and to report back to him and to the Legislature on findings and recommended approaches to address these problems. At Parent to Parent we often hear about difficulties in availability and affordability of health care from many families. This is a new opportunity for both Parent to Parent and our families voices to be heard and to make a difference. Parent to Parent will provide input to the Commission on problems we have heard from families. Individual professionals and families may also directly provide input in several ways. First, formal hearings will be held over interactive television networks over the next 2 months. (Vermont Interactive Television events are held and may be viewed at local studios in 14 towns and cities around the state.) On Tuesday, June 12 from 7:15 p.m. - 9:15 p.m. health care providers will be invited to testify, and on Monday, June 18 from 7:15 p.m. - 9:15 p.m. the Commission would like to hear from people who are uninsured, under-insured, or vulnerably insured. The Commission is soliciting testimony at these events from people who can offer broad perspectives, not from single-issue representatives. They are especially seeking concrete, specific recommendations rather than case histories demonstrating the lack of availability or affordability of health care. In other words, the hearings will focus on defining solutions, not problems. If you would like to have your voice heard in a different way, there are several other options. Testimony can be submitted on line via the Commission's web site at http://www.state.vt.us/health/commission. A special testimony link is provided where you can fill in a form and then click the SEND button at the bottom of the page. Your message will be treated as a public record and may be quoted in news accounts, on the website, or in the commission's report. For those who would like to protect their privacy, the identity blanks in the form are optional. Anonymous submissions will likely carry less weight with individual commissioners, however. You may also send letters to: John Howland Jr., Project Editor, c/o Vermont Department of Health, P.O. Box 70, Burlington, VT 05402-0070. Finally, if you are uncomfortable making direct contacts with the Commission, Parent to Parent will take forward your message. Contact a family support staff person at Parent to Parent at 655-5290/10800-800-4005 or Kay Van Woert at 985-5668. We will be sharing our families' voices to identify key concerns and possible solutions to bring to the attention of the Commission. Let your voice be heard! ©

Power Outages, Disasters and Children with Special Health Needs Thousands of California families with children with special needs have been experiencing "rolling blackouts" where the power goes out, phones don't work, and there is no certainty when things will return to normal. Family Voices is concerned about children whose physical, cognitive, or emotional condition makes them especially vulnerable when power outages or other major disasters (earthquakes, floods, ice storms) occur. Children most impacted include those who:

¥ Depend on life sustaining technology (ventilators, oxygen, IVs etc.);
¥ Can't be easily moved because of their physical fragility or equipment;
¥ Are affected by temperature extremes;
¥ Have emotional or other diagnosis (head injury, autism, developmental disability, visual impairments, a mental health condition) that affects their ability to adjust to sudden environmental changes.
Family Voices has discussed these events and is preparing a tip sheet for families and a position paper for policymakers, utility companies, emergency medical services personnel, insurance companies, hospitals and other groups that have a responsibility for helping our children and families in their local communities. Please contact Parent to Parent if you would like to receive a copy of either of these papers. For specific local information about how to prepare for power outages and other disasters that could especially impact children with special health needs, contact your local Red Cross, EMS, fire department, hospital and/or doctors, or local disaster preparedness planners. There is also a website for the Emergency Medical System for Children http://www.emsc.org/rehab/ framerehab.htm. And lets hope there are NO power outages or natural disasters that we have to contend with. ©

Under Development... A new resource is under development on the World Wide Web for children with special needs, their families and other caregivers: KidNeeds.com. Visitors and subscribers can find professional opinions and articles of interest on important topics, links to programs and services, explore opportunities to connect with other caring families and friends, and purchase a wide range of products specifically tailored for children with special health needs. KidNeeds.com is a subsidiary corporation of St. Mary's Healthcare system for Children in New York. ©

Would you like to add YOUR voice to that of 40,000 families and friends nationwide speaking on behalf of children with special health needs? Family Voices is a national grassroots clearinghouse for information and education about ways to assure and improve health care for children with disabilities and chronic conditions. If you would like to be counted in this movement to help make sure that children with special health care needs receive the services they need and deserve, contact Parent to Parent and we'll make sure you are added to the national network list. There are no dues and you may be as active or as quietly supportive as you like- but by joining you will be counted. Call Parent to Parent at 764-5290 or 1-800-800-4005 to add your voice to Family Voices. ©

Kay Van Woert of Parent to Parent at 985-5668 or email: kvanwoert@aol.com, or visit the Family Voices website at: http://www.familyvoices.org ©

Link to More Family Voices Pages

More info on Health Care Finance in VT

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