Policy and Legislation
Health care policy is defined by the actions taken by the Federal and State governments and private insurance companies that impact health care services for children and youth with special health care needs (CYSHCN). Due to the nature and severity of their health care issues, many CYSHCN must rely on government-funded programs, particularly Medicaid, to provide health care and other services. The Family Voices Policy Team focuses on monitoring federal and state legislation and provides information to help families and family leaders understand and influence the legislative process. Please visit our Legislative Action Center to learn more about current issues and how you can make your voice heard to legislators and others.
Family Voices represents 40,000 families navigating a confusing public and private health care system. The Family Voices Network has thoughtfully considered the Medicaid program. Collectively, we developed a Family Voices Medicaid Statement to inform policymakers about the importance of this program for children and youth with special health care needs. This Statement reflects their experience. It reinforces the strengths of the program, but also offers recommendations for improvement. We urge Medicaid policymakers to thoroughly review the Medicaid program while understanding the pressing health care realities of children and youth with special health care needs.
Please click here to read the Family Voices' Medicaid Statement.
Pending legislation, reauthorizing legislation, public laws, and court decisions effect health care policy for CYSHCN. Information about some of these key actions is provided here:
Deficit Reduction Act
The Deficit Reduction Act (DRA), passed by Congress and signed into law in February 2006 dramatically changes state options for the Medicaid program. States now have new latitude to charge co-payments and premiums. These are complicated changes to state financing of Medicaid. The FV Policy Team has developed a paper, Changes in the Medicaid Program: The Deficit Reduction Act (DRA) of 2005 which outlines the parameters states now have to make changes to their Medicaid program. In addition, the DRA included the Family Opportunity Act, a state option that will allow families of children and youth with special health care needs to purchase Medicaid. The DRA also includes Money Follows the Person, and funding to establish Family-to-Family Health Information Centers in every state. Please continue to watch this page as more information becomes available about the implementation of these new programs.
Pending Legislation
Lifespan Respite Bill
This bill provides funding for respite programs in each state. Currently there is no consistent funding source available to assure respite programs will be available. It also provides funding for training respite care workers. This legislation has broad bipartisan support and has passed the Senate during previous congressional sessions.
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Reauthorizing Legislation
Individuals with Disabilities Education Act of 2004
This law, passed in December, 2004, protects the civil right of students with disabilities to a free appropriate public education; provides opportunities for students, parents, teachers, and school administrators to work together; provides services and instruction at all stages, from early childhood through graduation from high school districts; outlines discipline and ensures safety; integrates the Individuals with Disabilities Education Act with the Elementary and Secondary Education Act.
More information is available on the US Congress Legislation Internet site.
TANF
This program developed out of the Welfare Reform Initiative replaced the Aid to Families with Dependent Children program. TANF requires eligible families a five year limit on welfare benefits and has a requirement for participation in a work program. Under this program, the welfare family has direct access to Medicaid services. When they are no longer eligible after the five year period, their children are to remain eligible for Medicaid services. Many children with special health care needs are lost within the welfare system. Their families are often not aware of other programs and services their children may be eligible to receive. The Senate Finance Committee is currently developing their reauthorization bill which may include measures that assist families of children with special health care needs.
Medicaid
The 2006 budget has passed both the House and the Senate chambers requiring $10 billion dollars of cuts be identified by an independent Medicaid commission by September 1, 2005. The National Governors Association has briefly outlined their proposal for such cuts with more clarification to follow (Note: article). These proposals will have to return to both chambers for passage before such cuts can be passed on to the states. Democrats urged that an independent commission be identified by the Institute of Medicine, however Secretary Leavitt has chosen to sponsor the commission within the Department of Health and Human Services. The Commission begins their deliberation on July 27, 2005.
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Proposed Legislation
Children's Dental Health Improvement Act (to be introduced)
This bill will include several sections including but not limited to: improving delivery of pediatric dental services under Medicaid And SCHIP; correcting graduate medical education payments for dental residency training programs; improving delivery of pediatric dental services under community health centers, public health departments and Indian Health Services; and improving oral health promotion and disease prevention programs.
Family Caregivers Tax Relief Act of 2003 (to be introduced)
This bill would provide a tax credit for the costs of providing care for someone with a chronic condition or who needs significant caregiving. This tax credit would cover expenses related to a person with a chronic condition including prescription drugs medical bills, durable medical equipment, specialized care (home health, custodial care, respite or adult day care), transportation, specialized therapies or specialized services for children with chronic conditions.
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Public Laws
Ticket to Work
The Work Incentives Improvement Act (WIA) makes it possible for Americans with disabilities to enter the workforce without endangering their federal health care coverage. It allows them to buy into Medicaid and extends current Medicare benefits. The legislation also improves federal job training by giving people with disabilities new freedom to choose from various public and private sector employment services.
A Congressionally-appointed panel serves to monitor implementation of the Ticket to Work and Work Incentives program. The panel meets quarterly in Washington, DC and two times around the country. They seek public comment at each of their meetings which are listed on their website prior to the meeting. Most recently the panel held an employer network summit to discuss ways of improving the use of the ticket to work program.
- Additional Resources may be found at:
- Social Security Online -
http://www.ssa.gov/work/Ticket/ticket_info.html - Social Security: Ticket to Work and Work Incentives Advisory Panel -
http://www.ssa.gov/work/panel/
On July 25, 2003 theU.S. Department of Labor issues WIA Compliance Assistance Checklist, designed to ensure meaningful participation of people with disabilities in programs and activities under WIA.
- For more information:
- Press Release
- Cover Memo
- Checklist
Foster Care Independence Act
Many children in foster care lose their Medicaid coverage upon reaching their 18th or 19th birthday. The Foster Care Independence Act makes it possible to continue to offer these children access to health care. This program is an optional program to the states. Currently only seven states have chosen to expand Medicaid benefits to this optional group.
Children's Health Act
The Children's Health Act of 2000 authorizes expanded research and services for a variety of childhood health problems, especially for diseases and conditions having a disproportionate or significant impact on children, including autism, diabetes, asthma, hearing loss, epilepsy, traumatic brain injuries, infant mortality, lead poisoning, and oral health.
The Coalition on Children's Health is monitoring the progress of this legislation and is working to develop a website. This legislation has established the National Center on Birth Defects and Developmental Delay. The research portion of this legislation is headquartered at the National Institutes on Health.
Health Insurance Portability
Also known as the Kassebaum-Kennedy Act or HIPAA, this law guarantees the availability of health insurance coverage for certain employees and individuals, and limits the use of preexisting condition exclusions for both insured and self-insured ERISA plans.Regulations are written and currently being implemented. The privacy sign off is being done in all health/dental care practices across the country. The only drawback has been Medicaid's requirement that services cannot begin unless a person's insurance eligibility has been identified particularly under HCBS waiver services.
- Additional Resources may be found at:
- The National Center for Policy Analysis: The Kassebaum-Kennedy Hotline
http://www.ncpa.org/~ncpa/healthhl.html
Medicare Prescription Drug Bill-Part D
Beginning January 1, 2006, those individuals who meet the criteria for both Medicaid and Medicare including those in nursing home settings will be required to enroll in a prescription drug plan. The purpose of Part D is to move those who are currently covered for prescription drugs by their Medicaid program and enroll them into private insurance drug coverage. There is a plan for disseminating information about the new coverage choices in which information will be available sometime this fall. The Dept. of Health and Human Services is still negotiating with private plans and has offered assurances that “special needs” plans will also be available to this population. There is a premium and co-pay schedule that each plan will require of participants, however those who are low income will be granted subsidies to assist in payment. Some participants will be automatically enrolled while others will need to apply for such low-income subsidies.
- Additional Resources may be found at:
- Centers for Medicare and Medicaid Services: Medicare Modernization Act
http://www.cms.hhs.gov/medicarereform/
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Court Cases
Cedar Rapids Community School District v. Garrett F.
This case arises under the Individuals with Disabilities Education Act, 20 U.S.C. Section(s) 1400-1491. At issue is whether the IDEA requires the Cedar Rapids Community School District to provide Garret F. with continuous nursing services while he is in school. The district court 2 granted summary judgment in favor of Garret finding that the necessary services were not within the "medical services" exclusion of the IDEA, and therefore, were "related services" which the school district must provide.
- Additional Resources may be found at:
- Family Voices' Questions and Answers about the Garrett F. Supreme Court Case
http://www.familyvoices.org/info/garrettfq&a.htm
- Tatro to Detsel to Garret F.: A Personal Reflection on the Evolution of the IDEA
"School Health Services" Provisions
http://www.nls.org/golinker.htm - Cedar Rapids v. Garret F. (from Wrightslaw)
http://www.wrightslaw.com/law/caselaw/case_Cedar_Rapids_SupCt_990303.htm - Cedar Rapids Community School District v. Garret F. (from Disability Law Update) http://www.disabilitylawupdate.com/education/case2.htm
- Disabled Pupils Win Right to Medical Aid (from the Washington Post)
http://www.washingtonpost.com/wp-srv/national/longterm/supcourt/stories/court030499.htm
Olmstead
In Olmstead vs. L.C. (98-536), the United States Supreme Court held that the unnecessary segregation of individuals with disabilities in institutions may constitute discrimination based on disability. The court ruled that the Americans with Disabilities Act may require states to provide community-based services rather than institutional placements for individuals with disabilities.
- Additional Resources may be found at:
- Olmstead v. L.C. (From Bazelon Center for Mental Health Law) http://www.bazelon.org/issues/disabilityrights/resources/olmstead/index.htm
- DHHS Letter to State Medicaid Directors (from Wrightslaw)
http://www.hhs.gov/ocr/olms0114.htm - DHHS Secretary Donna Shalala on the Supreme Court’s Decision Regarding the ADA’s
“Most Integrated Setting” Requirement: Olmstead v. L.C.
http://www.hhs.gov/ocr/olmintro.htm - Office for Civil Rights, New Freedom Initiative - Disability, Most Integrated Setting - The Olmstead Decision
http://www.hhs.gov/ocr/mis.htm
PGA Tour v. Casey Martin
Casey Martin is a professional golfer who has a circulatory disorder that makes it impossible for him to walk the length of the course during tournaments. The PGA Tour considers walking the course an essential part of professional golf and refused to waive the walking requirement for Mr. Martin and let him use a golf cart. Martin sued under the Americans with Disabilities Act and obtained a court order forcing the PGA Tour to let him ride. The PGA Tour has taken the case to the Supreme Court. The court should render a decision shortly.
University of Alabama v. Garrett
In Garrett, the Supreme Court ruled that state employees can no longer sue their employers for money damages under Title I of the Americans with Disabilities Act (ADA). The Court held that Congress did not have the constitutional authority to waive the state’s “sovereign immunity,” even if there had been a sufficient record of discrimination, and that the remedies set forth in the ADA far exceeded that which was required to remedy unconstitutional state conduct.
- Additional Resources may be found at:
- The Garrett Case (from the Bazelon Center for Mental Health Law) - http://www.bazelon.org/issues/disabilityrights/resources/garrett/index.htm
