- Most of them do not include the basic principles of universal coverage, flexible benefits, comprehensive family-centered care, family and professional partnerships, cost-effectiveness, and quality assurance that Family Voices believes must be present for all people with chronic illness.

- Without universal coverage, and with DNA testing, insurance companies will be able to systematically exclude people with disease genes from coverage, whether or not they have symptoms. Already there have been incidents where people with a recessive gene like cystic fibrosis -- people who themselves will never be ill from the disease -- have been discriminated against.

- At this point, President Clinton's Health Security Act (S. 1757 and H.R. 3600) and Senator Wellstone's American Health Security Act (S. 491 and H.R. 1200), also known as the single-payer plan, contain the fewest barriers to care for people with special health care needs. Most others do not include universal coverage and do not spell out benefits!

- The architects of the Clinton Plan have offered to continue working with Family Voices and other advocates to make necessary changes, especially on outpatient rehab, durable medical equipment, and copayments.

- Health care reform is happening very fast -- too fast to sit back and wait.

Health Care Reform must include all children, including children with special health care needs. That's the Family Voices mission. To that end we work with Congressional committee staffs and advocates in Washington almost weekly. Our partners include Children's Defense Fund, March of Dimes, United Cerebral Palsy, National Assoc. of Child Advocates, Assoc of Maternal and Child Health, Academy of Pediatrics, Natl Assoc of Children's Hospitals and Related Institutions, George Washington Center for Health Policy Research.

Learn everything you can. For comprehensive information, write to Family Voices, P.O. Box 769, Algodones, NM 87001 (505) 867-3159; Fax: (505) 867-6517. Ask for their Facts and Questions. Note 12/97: See also http://www.ichp.edu/mchb/fv/access/

Tell your story. Write your Senators and Representatives. (If you don't know who they are, call the Congressional Switchboard at (202) 224-3121.) Include a family picture. Call their local offices and make arrangements to meet with them.

Even if you've never done anything like this in your life, you can do it, and it's no big deal! Keep in mind this motto: If I don't do it, who will??

As published in the June 1994 issue of VHLFF, 2:2. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org