As we work with families across the United States it is clear that the current system of health care funding is not working for many, if not most, families with VHL. While most of us are agreed that change is needed, it is important to look at the proposals and envision whether our own health care situation would be better or worse under the new plan.

There are a number of organizations lobbying in Washington for special interests. We went looking for organizations which would represent the needs of people like ourselves, to keep us informed, and through which our voices could best be heard. We report here on two such organizations.

Families, U.S.A.

1334 G Street, NW, Washington, DC 20004, Tel: (202) 737-6340, (800) 593-5041 from most states.

Families U.S.A. is a well-funded lobbying group, focused on passing President Clinton's plan. Their position is that while the plan may not be perfect in every aspect, it is such a very good first step that it deserves to be passed now, and fine-tuned later.

Phyllis Torda of Families U.S.A. told us that they will be monitoring amendments to the bill as it passes through Congress, working to ensure the maintenance of its essential characteristics:

- Does it guarantee that you and your family won't ever lose your health insurance, no matter what?

- Does it include help for your family to provide long term care to a father with Alzheimer's disease or a mother with crippling arthritis at home where you want them cared for?

- Does it do something about getting skyrocketing health charges under control?

- Does it give you somebody to complain to if you're not happy with the service you get from your doctor or hospital?

Family Voices

P.O. Box 769, Algodones, NM 87001 Tel. 505-867-3159, Fax: 505-867-6517.

Family Voices is a grass-roots organization composed of families who have children with special health needs, and their friends. While most lobbying groups focus on routine health and accident, and the needs of the elderly, this group focuses on the needs of families like ours which will require access to preventive diagnostic tests, extended therapy, or health services due to chronic illness for people younger than retirement age.

They distribute accurate information about proposed changes in health care. Polly Arango of Family Voices told us that "while our bottom line is that health care reform must take place, and universal coverage and the abolishment of pre-existing conditions clauses is wonderful, it is clear that our children and families are still extremely vulnerable, and in many ways remain forgotten. That has got to change! There is still work to be done."

They ask that every family read the September 7 draft of the Act, and then sit down and write their own analysis of how they and their family would fare, comparing health services and costs in the President's plan to what they have now. So far, more than fifty families have responded to this appeal.

What Can You Do? [updated, 12/97]

Get in-depth authoritative information about the legislation proposed. Don't rely on one commentator's version, which may be biased. Read commentaries from people both for and against the bill, to get a balanced view.

As you read it, consider how your family will fare. Send your comments to Family Voices, and/or Families U.S.A. Please send us a copy of your letter. Both organizations maintain databases of family stories which can be used in Congressional hearings as examples of why a particular provision is needed.

Visit and write your members of Congress. They all come back to their home districts frequently. Either of these organizations can provide a list of Members of Congress, or call the Congressional Switchboard at (202) 224-3121. Most Senators and Representatives will hold health care reform meetings at home, so get on their agenda. Tell your own story, and ask questions.

Talk to friends, neighbors, family members, and your family's health care providers about what's going to happen with your family under the plans.

Be an active participant in this important legislative process.

Family Leave Law Now in Effect

The Family and Medical Leave Act (U.S.) went into effect in August 1993. The act gives workers the right to take an unpaid leave of absence without jeopardizing their jobs. Private employers with fifty or more employees are covered under the law.

You can qualify for family or medical leave when a son or daughter is born or adopted; when there is a need to care for a seriously ill spouse, son, daughter, or parent; or when you have a serious health condition yourself. Although the leave is unpaid, your employer is required to continue paying your health insurance premiums at the same rate while you are out. A Guide to Using the Family and Medical Leave Act: Questions and Answers, is available for $4.95 from Women's Legal Defense Fund, 1875 Connecticut Avenue, N.W., Suite 710, Washington, D.C. 20009.

As published in the VHL Family Forum 1:4, December 1993. For permission to reprint, please contact the VHL Family Alliance at editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.