0400Newsletter Vermont Family Voices

	Spring 2000 FAMILY OPPORTUNITY ACT of 2000 FAMILY HEALTH INFORMATION CENTERS The Work Incentives Bill of 1999 Important Family Survey Results STAND FOR CHILDREN-JUNE 1, 2000 Other Vermont Voices links
A family support program of Parent to Parent of Vermont providing health information.

FAMILY OPPORTUNITY ACT of 2000
The Family Opportunity Act of 2000 will allow states to offer Medicaid coverage, through a "buy-in" program, to children with severe disabilities living in middle income families. It would also allow states to extend Medicaid coverage to children with potentially severe disabilities who, without access to the health care services, can be expected to become severe enough to qualify them for SSI.

If this Act is passed into law, states would provide funds for establishing Family to Family Health Information Centers to assist and support families of children with disabilities and/or special health care needs. These centers, staffed by actual parents of children with special needs, would provide technical assistance and accurate information to families on various health care programs and services available and appropriate for children with disabilities and/or special needs.
The Family Opportunity Act of 2000 is intended to address the two greatest barriers preventing families from staying together and staying employed:
(1) lack of information and access to appropriate services, and (2) lack of access to the advocacy, information and assistance services they need to help cut the "red tape" in meeting their children's health care needs. This legislation was introduced in the Senate on March 22, 2000 and many parents, family members and advocates attended.

If you would like to thank the sponsors of this legislation or share your story contact Senator Kennedy (D-MA), at senator@kennedy.senate.gov
Or by phone: 202-224-4545 / Fax: 202- 224-2417 and Senator Grassley (R-IA), chuck_grassley@grassley.senate.gov or by phone: 202-224-3744 / Fax: 202-224-6020

Fortunately, this year Family Voices was invited early on to provide family perspectives and experiences as the Family Opportunity Act was being developed. Our strong (and passionate!) national grassroots network of families helped gather letters and stories from around the country that informed this Act. Research results from the national Family Survey, recently completed by Family Voices and Brandeis University, provided compelling data that justifies the importance of the Act's Medicaid buy-in and its funding for Family to Family Health Information Centers. For seven years, the Family Voices Coordinator network has proven that the concept behind Family to Family Health Information Centers works. ©

FAMILY TO FAMILY HEALTH INFORMATION CENTERS
Family Voices has received $500,000 to expand the Family to Family Health Information Centers Network. Six, state, parent-run organizations have been funded, in a planning and development phase, to establish Family Health Information Centers across the country. We believe that the evaluation of these six new centers in this demonstration project will convince policy makers that these centers are necessary to provide consumers with clear and accurate information and decision making resources.
For the past two years, Parent to Parent has been advocating for the funding of Family Health Information Centers, the concept, based on our peer support model, ensures the ongoing support of families in accessing health care finance support. The Health Information Centers will guide families to make good decisions about their child's health care choices and help families walk through health plan choices, review appeals and grievance processes, and work with managed care and other health insurance programs to be more family-centered.
Over the next few months it will be important for Family Voices demonstration projects to collect data showing the importance of providing timely and necessary information to families who are making important health care decisions. For example: How often have Family Voices coordinators provided outreach to families about Medicaid, programs or services? How often have they helped parents and professionals understand how to access benefits or guided them through the appeal process? These and other questions can demonstrate the effectiveness of Family to Family Health Information Centers, and will help us achieve our goal of establishing Family Health Information Centers in each of the 50 states. Vermont is hopeful that we too will obtain funding to enhance the work currently being done to assist families and professionals. ©

The Work Incentives Bill of 1999:
On December 3, 1999, President Clinton signed into law the Work Incentives Act of 1999! This bill enables persons with significant disabilities to enter, re-enter or avoid leaving the work force without worrying about losing their Medicaid/health insurance coverage. This bill also extends Medicare coverage to employed persons with disabilities, creates new optional categories of Medicaid eligibility for employed persons with disabilities, and creates a "Ticket to Work" and "Self-Sufficiency" program that allows persons with disabilities greater choice of vocational rehabilitation and employment service providers.
The TICKET TO WORK and SELF SUFFICIENCY programs give individuals with disabilities greater accessibility to a broader pool of vocational rehabilitation providers. Beneficiaries can have vouchers to buy employment services, case management, vocational rehabilitation and support services from providers of their choice. These programs will begin as demonstration projects in selected sites (yet to be determined) and will be available in every state within four years. The Commissioner of the Social Security Administration and an Advisory Panel will evaluate the effectiveness of these efforts.
Medicaid Expansion: Under the Work Incentives Bill, states can provide Medicaid to people with disabilities who have higher incomes and resources than are permitted under current law. The current income levels are 250% of Federal Poverty Level and $2,000 in resources. The new law also assures Medicaid coverage for those whose medical conditions have improved and who would now lose their Medicaid coverage. States can require these individuals to "buy into" Medicaid by paying for premiums or other charges based on a sliding fee scale.
We thank Senator James Jeffords for his years of hard work and dedication in getting this bill passed into law. ©

Important Family Survey Results
During the past two years, more than 2000 families of children with special health care needs from around the country participated in a Family Voices/Brandeis University survey to share their experiences in finding health care for their children.

"I do everything from morning to night for my son. I take him to school, doctor's appointments, horse back riding, swimming, bathing, feeding, and do his G-tube all night long. I also have three other children. It's a 24 hour a day job. I average three to four hours of sleep per night."

This is the first survey of its kind. The boxed comment was just one of many received from families. The survey showed that although most children have insurance, many families have problems with services like respite, therapies, home health and mental health care. In fact, families who have children with complex conditions or behavioral health conditions express the most dissatisfaction and frustration with finding adequate care. It also reported that nearly two-thirds of the families had reduced their hours of employment or stopped working all together because of their child's health condition. The survey results will help Family Voices and other advocates work with policy makers to improve healthcare delivery to children with special health care needs.
This Family Voices survey was funded by the David and Lucille Packard Foundation, the Federal Maternal and Child Health Bureau's Division of Services for Children with Special Health Needs, The Annie E. Casey Foundation and the Butler Family Foundation.
For more information please visit the Family Voices National Office's website at http://www.familyvoices.org or call the Family Voices office toll free at: 888-835-5669 ©

STAND FOR CHILDREN-JUNE 1, 2000
The children's Defense Fund and Parent to Parent of Vermont invites you to participate in Stand For Children Day 2000. This year's theme is Building Safer Healthier Communities. Thousands of committed volunteers will be organizing activities throughout the country- and you could be one of them!!
Contact the local organizers (or become a local organizer) to assist with this yearÕs plans... organize clothing, food or book drives, skill building workshops, distribute information about Parent to Parent and other organizations that support families who have children with special needs, etc.
To get involved or get more information about the Stand For Children Day 2000: Building Safer and Healthier Communities, call, write or e-mail the Children's Defense Fund-Stand for Children: phone: 1-800-663-4032,
address:

Children's Defense Fund- Stand for Children
1834 Connecticut Avenue, NW,
Washington, DC 20009
e-mail: tellstand@stand.org ©

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Previous Vermont Family Voices Pages:
Getting Youth On Board, Supreme Court Ruling, "PC PLUS", What Is A MEDICAL HOME? from '99 Fall/Winter
Health Care Concerns, PCCM, Personal Care Services info from '99 Spring edition
Dr Dynasaur info, Medical Managed Care, Waiver info, Katie Beckett Program vs Dr. D from '98 Fall edition
PKU- a legislative story from '98 Spring edition
More info on Insurance (Six Ways Booklet)

National Family Voices Website

Spring 2000 Newsletter–
From Our Director (Cover Page)
Advocacy1: H629 Act etc
Advocacy2 Early Childhood Day
New Staff/FIRST program
PIC news!
Readers' Forum
Books & Beyond- Biasco Fund
Our Calendar