• State Children’s Health Insurance Program (S-CHIP) expansion: States expect to widen these programs to cover more children/family members and increase funding for state plans. This issue replaced managed care as the Number One priority in the 2000 NCSL State Health Priorities Survey. By the end of 1999, all states and territories had enacted legislation creating an S-CHIP plan. According to NCSL, 45 states are expected to consider initiatives that will expand or increase access for families in existing S-CHIP programs, and 36 states plan to consider S-CHIP enhancements or changes.
• Medicaid eligibility: State legislatures expect to consider legislation that either expands existing or rolls back current Medicaid eligibility (40 states). Several states will revisit tobacco settlement allocations to be used in this area. Also, 44 states will review current Medicaid programs' reimbursement rates. Additionally, 44 states targeted coverage of basic health care benefits for the working poor under state-sponsored programs this year.
• Managed care: Thirty-nine states expect to consider legislation on medical record confidentiality, independent/external review in the appeals process (38 states) and health plan liability (37 states). Thirty-seven states expressed the need to provide quality information to consumers through a health plan reporting system.
• Mandated benefits: Several states plan to address the coverage of services in many areas, including contraceptive coverage (23 states) and cervical cancer screening (23 states). Newborn screening tests were not specifically mentioned in NCSL's survey results.

Other issues relevant to the March of Dimes that were addressed in the survey include:

• rural health care (40 states);
• adolescents and children: school-based health services (42 states); and
• tobacco: overall prevention (33 states), youth prevention efforts (35 states), establishment or modification of funding allocations or uses (37 states).

FY 2001 Budget Increases Funding for Foundation Priorities
When President Clinton and Congress completed the FY 2001 budget on Dec. 15, funding for all Foundation priority programs received a boost.

The package provides funding for the Department of Health and Human Services (HHS) including agreements on health, education and labor programs, and other federal agencies whose appropriations had not been approved separately. The final budget agreement included two provisions of special interest to the March of Dimes:

• Reallocation of Unspent S-CHIP Funds: the budget bill allows States that used all of their S-CHIP allotments for FY 1998 and FY 1999 to receive additional funds. States that did not use all of their S-CHIP allotment will be able to retain up to 60 percent of the unspent funds. States may use up to 10 percent of the retained FY 1998 funds for outreach activities.
  
  The Secretary expects to rely on reports submitted by states by last Dec. 15 for the FY 1998 redistribution. Redistributed funds will be available through the end of FY 2002.

• Medicaid and S-CHIP presumptive eligibility enrollment: under Medicaid presumptive eligibility rules, states are allowed to temporarily enroll children whose family income appears to be below Medicaid income standards, until a final formal determination of eligibility is made. The budget bill clarifies states' authority to conduct presumptive eligibility determinations under separate (non-Medicaid) S-CHIP programs.
  
  The provision also adds several agencies to the list of those qualified to make Medicaid presumptive eligibility determinations for children. These new groups include agencies that determine eligibility for Medicaid or S-CHIP; certain elementary and secondary schools (including those operated or supported by the Bureau of Indian Affairs, a state or tribal child support enforcement agency); and organizations that provide emergency food and shelter.

FEDERAL FUNDING LEVELS FOR FY 2001 (Dollars in Millions)

(1) No line item available, based on funding for birth defects surveillance and research programs, fetal alcohol syndrome, autism, and spina bifida activities at CDC.
(2) Polio Eradication funding includes 91.4 million for CDC and 25 million for United States Agency for International Development.

OGA Launches Newborn Screening Research
The March of Dimes has made expanding access to newborn screening a foundation-wide advocacy priority for 2001.

To assist chapters with advocacy activities surrounding newborn screening, the Office of Government Affairs (OGA) is funding a policy research project to learn more about costs of screening and methods of financing in the states. Last Nov., OGA issued a Request for Proposals to identify possible researchers. The submitted proposals are under review.

Key research questions include:

Cost of Newborn Screening. What is the unit cost of collection and processing of the eight newborn screening tests recommended by the March of Dimes? What is the marginal cost of conducting all eight tests in those states currently conducting only some of the recommended tests? How does tandem mass spectrometry technology impact the cost of newborn screening? In what way does hospital accounting affect costs (e.g., direct costs, allocated costs, mark-ups)? What other factors affect state newborn screening costs?

Costs of Follow-up Treatment. For each of the eight recommended tests, what are the costs of follow-up treatment for newborns testing positive? What are the costs of linking parents to needed services?

Financing of Newborn Screening. Who pays for collection and testing of the blood sample? To what extent does the state use federal funds through the MCH block grant or other sources to cover these costs? Do states charge parents a fee for the test? Are hospitals responsible for any part of the costs? If so, how much do hospitals charge parents for the tests? If parents are responsible for some of the costs, are these expenses mandated to be covered by private insurance in the state, and are they covered by the Medicaid and S-CHIP programs?

Public Financing of Follow-Up Treatment. To what extent do state newborn screening programs currently provide follow-up care for those infants who are screened and found to need treatment? (PKU formula, etc.) For those newborns who are eligible for Medicaid, what is the role of EPSDT, Medicaid and S-CHIP coverage in general?

Private Financing of Follow-Up Treatment. To what extent do states mandate private insurance coverage of follow-up care? Where mandates do not apply, is follow-up care generally covered by private plans?

The results of this policy research project will be available to chapters later this year.

Publications Coming Soon from OGA

March of Dimes Data Book for Policy Makers: Maternal, Infant, and Child Health in the United States 2001
The 2001 edition of the March of Dimes Data Book for Policy Makers will be available early in the year. This Data Book is a useful guide for national and state policy makers, staff and others seeking key facts on maternal, infant and child health.

It provides key national and state information on infant mortality, birth defects, prevention, and health insurance through talking points, graphs, and tables. New material in this second edition includes summary information on newborn screening, health insurance and access to care, and greater detail on racial and ethnic disparities in maternal and child health indicators.

Copies of the Data Book will be sent to members of the U.S. Congress, governors, state health commissioners and key state legislators. Copies will also be distributed from the National Office to regional offices, chapters, and divisions. Additional copies will be available at no cost to chapters from the Fulfillment Center (Item # 50-1454-01).

An Advocate’s Guide to Creating or Expanding A State-Based Birth Defects Tracking System

Currently, three-quarters of the states have some system for tracking birth defects, however, their methods and data sources, and therefore quality, vary considerably. The March of Dimes supports creating or expanding a state-based birth defects surveillance system in every state. This guide briefly describes the steps advocates would take to initiate or improve a birth defects tracking program in their state. (The Guide will be sent to all chapters and divisions early next year.)

March of Dimes 107th U.S. Congress Handbook
The Handbook, produced especially for the March of Dimes, contains: biographical data on each elected official; key staff contacts; addresses; telephone numbers; and photos of the U.S. Representatives and Senators. In addition, the Handbook lists the membership of all House and Senate Committees and Subcommittees and provides a glossary of legislative terms. Since this guide was prepared exclusively for the Foundation, we were able to include information about March of Dimes public affairs issues and policy priorities. (Copies of the Handbook will be sent to Chapters in April.)