March of Dimes Applauds Creation of Congressional Autism Caucus
The March of Dimes applauded the forming of the bipartisan Coalition for Autism Research and Education (C.A.R.E.) in a statement released on Feb. 13.

"We look forward to working with each member of this group to expand federal research on autism and other developmental disabilities in children," said March of Dimes President Dr. Jennifer L. Howse.

C.A.R.E. goals aim to:

• Increase awareness of the autism spectrum disorders (ASDs) among members of Congress and policy analysts on Capitol Hill;
• Educate members of Congress and policy analysts on Capitol Hill on current scientific knowledge regarding autism causation and treatment, and the burden associated with autism spectrum disorders;
• Provide a forum where autism related issues can be debated and discussed;
• Expand federal research into autism, and bring together governmental and non-governmental entities which may play a role;
• Enact legislation to ease the financial burden on families affected by autism; and
• Ensure that the Centers of Excellence created under the Children’s Health Act of 2000 are established in an effective manner.

Although the National Institutes of Health, the March of Dimes, and numerous other organizations have funded research relevant to autism, much about the disorder remains mysterious. Much more needs to be learned about the genes and environmental factors involved in brain development and how it goes awry in functional disorders such as autism, mental retardation, and dyslexia.

Autism is a pervasive disorder characterized by severe language, social, and behavioral abnormalities. Although no one really knows for certain, early signs of autism may be present at birth even if the condition is not recognized until early childhood.

The co-chairmen and founders of C.A.R.E. are Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA). The three sponsor organizations include the Autism Society of America (ASA), Cure Autism Now (CAN) and the National Alliance for Autism Research (NAAR).

C.A.R.E. was formed on Jan. 10 with the motto, "We are the voices of the voiceless," and is the first Congressional Member Organization (CMO) to focus its efforts on the autism spectrum disorder. C.A.R.E. will host quarterly briefings in conjunction with ASA, CAN, and NAAR. The Office of Government Affairs will work closely with C.A.R.E in the coming months to ensure birth defects and developmental disabilities research are adequately funded in the FY 2002 budget.

Number of Children Ever Enrolled in S-CHIP 1999-2000

Notes: State reported enrollment figures. Federal fiscal years run from Oct. 1st – Sept. 30th.

N/I = program not implemented

Source: Health Care Financing Administration (www.hcfa.gov/init/children.htm)

March of Dimes Supports Health Coverage for Legal Immigrants
Sens. Bob Graham (D-FL) is expected to introduce legislation in the Senate and Reps. Lincoln Diaz-Balart (R-FL), Henry Waxman (D-CA), and Sander Levin (D-MI) in the House, which would restore health care benefits for legal immigrant children and pregnant women. This proposed legislation is identical to S. 1227 introduced in the last Congress, which the March of Dimes also supported.

The March of Dimes joined other advocacy groups in signing a letter to President Bush urging him to include this provision in his proposed budget set to be released in April (an outline of the budget was released on Feb. 28).

If approved, the legislation would allow states to provide health coverage under Medicaid and the State Children’s Health Insurance Program (S-CHIP) to infants, children and pregnant women who are legal immigrants and arrived in the U.S. after Aug. 22, 1996. Under current law, states are barred from using federal funds to provide Medicaid or S-CHIP benefits for most categories of immigrants who entered the U.S. after Aug. 22, 1996 (the date on which the 1996 welfare reform bill was enacted), and have lived here less than five years. The Congressional Budget Office estimates the legislation would cost the federal government $600 million over five years and $1.6 billion over 10 years. States choosing to exercise the option would incur the additional cost of the state match.

The March of Dimes sent letters to members of Congress last year urging their support. The Foundation also issued a press release last Oct. 4 supporting the bill.

House and Senate Reintroduce the "Family Opportunity Act"
Parents of disabled children could purchase coverage under Medicaid.

On Feb. 13, Reps. Pete Sessions (R-TX) and Henry Waxman (D-CA) introduced legislation in the House (H.R. 600), and Sens. Charles Grassley (R-IA) and Edward Kennedy (D-MA) introduced a companion bill in the Senate (S. 321) which would allow families of disabled children to purchase health coverage under the Medicaid program.

The "Family Opportunity Act," also called the "Dylan Lee James Act," would permit a Medicaid buy-in for disabled children whose family income or resources is above the poverty level. The March of Dimes supports the legislation and is working to secure its passage this year.

Currently, parents of severely disabled children who work lose Medicaid eligibility for their disabled children if they have income and resources above the poverty level. The bills would give states the option to allow parents to earn income above poverty levels while maintaining health care for their disabled children by purchasing Medicaid.

At press, 62 senators and 104 congressmen have cosponsored the legislation. Last year’s bill, narrowly missed being included in a package of broad legislation which was passed in the closing days of the 106th Congress. The Congressional Budget Office estimates the bill would cost the federal government $2 billion over five years. States would also incur matching costs if they offer this coverage option.

Copies of the legislation can be downloaded from Thomas: http://thomas.loc.gov/.

Indiana Chapter Secures Legislative Sponsors
During the annual lobby day on Jan. 29, Indiana Chapter volunteers and staff met with legislators to promote improvement of the state birth defects surveillance program. The chapter recommended that the state develop a legislative study committee to research the issue, and secured 20 legislative sponsors for the proposal.

Approximately 65 chapter representatives, including Ambassador children from across the state, participated in advocacy training and in activities at the Capitol. Volunteers and staff wore T-shirts imprinted, "Indiana, it’s time to do our homework." Activities included a march to the Capitol, adoption of a resolution in the Indiana House declaring it March of Dimes Day, and a rally in the statehouse atrium.

The lobbying event received excellent media coverage including a live interview with the State Public Affairs Committee chair on the NBC-TV affiliate. The children’s walk was also featured by the local ABC and FOX affiliates.

Kansas Eliminates HealthWave Waiting Period
The Public Affairs Committee of the Kansas Chapter has successfully lobbied to amend the state’s HealthWave program to include presumptive eligibility for newborns.

On Jan. 25, Kansas chapter representatives testified at a legislative hearing before the state House Health and Human Services Committee to support presumptive eligibility for newborns eligible for HealthWave, the state’s S-CHIP program. Gov. Bill Graves ended the debate by instructing the Social and Rehabilitation Services Department (SRS) to cover health costs incurred by newborns from the date of birth, thereby eliminating delays in coverage of up to 45 days.

The Kansas Legislature created HealthWave in 1998 to provide health coverage for uninsured children. HealthWave is a capitated managed care plan, with a benefit package similar to the state employees’ health care package. Eligible children are under age 19 with a family income of less than 200% of the federal poverty level ($34,100 for a family of 4 in 2000), who aren’t eligible for Medicaid, and do not qualify for the State employees health plan.

OGA Builds Inventory of Genetics Policy Issues
Rapid developments in genetics will affect public policy at the federal and state levels in a variety of ways. To keep pace, an OGA consultant has conducted an inventory of public policy issues arising from scientific developments in genetics that relate to the March of Dimes mission.

Issues identified include:

• Public and private insurance coverage and payment for genetic tests and genetic counseling services
• Federal oversight of genetic testing
• Licensure of genetic counselors
• Genetic discrimination affecting health insurance access and employment

The March of Dimes has long been involved in genetics-related public policy issues. In the recent past, the Foundation has supported increased funding for The Human Genome Project and other National Institutes of Health research programs, has submitted comments on proposed federal regulations involving the privacy of medical records, and has advocated that states provide recommended newborn screening tests.

The inventory will be reviewed by the National Public Affairs Committee and will be used as a source of reference to develop the Foundation’s legislative and regulatory advocacy agenda.

OGA Updating Study of Uninsured Pregnant Women
The March of Dimes Office of Government Affairs has contracted with Kenneth Thorpe, Ph.D. to update his 1999 report on uninsured pregnant women.

That report found that nationally:

• nearly 14% of pregnant women were uninsured in 1997 (465,000 women);
• nearly 77% of these women (358,000) were actually eligible for Medicaid;
• another 40,000 uninsured teen pregnancies would be covered under the State Children’s Health Insurance Program (S-CHIP) not yet in effect that year;
• and an additional 45,000 uninsured pregnant women could be covered if S-CHIP were available to pregnant women over age 18 who meet the program’s income requirements.

In this updated report, Dr. Thorpe will analyze Current Population Survey data for 1999, the most recent data available, to estimate both the number of uninsured pregnant women nationally, and the number that could benefit if states were allowed to cover income-eligible pregnant women under S-CHIP, regardless of age.

The report, expected this summer, will be used in OGA’s advocacy efforts to amend federal law to enable states to cover all income-eligible pregnant women.