Family Opportunity Act Re-Introduced

Bill Addresses the Tragedy of Custody Relinquishment for Children's Access to Care

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February 28, 2001-Legislation to give many more children with serious disabilities access to needed health and mentalhealth services was reintroduced this month by Senators Charles Grassley (R-IA) and Edward Kennedy (D-MA)and Representatives Pete Sessions (R-TX) and Henry Waxman (D-CA).

The Family Opportunity Act of 2001 (S. 321 and H.R. 600) is also referred to as the Dylan Lee James Act, in honor of a little boy with Down syndrome who lived in Representative Sessions' district in Texas. He lost Medicaid coverage when his father received a $3,000 bonus. The bill targets the huge gap in coverage faced by families who earn too much to qualify for Medicaid, lack employer health coverage or have private insurance with inadequate mental health benefits.

Legislation Would Keep More Families Together

The Bazelon Center documented the tragic consequence of this gap in a report released last year. As many as one fifth of parents who seek mental health services for a child are asked to choose between foregoing the necessary treatment, giving up custody to the state so the child can obtain comprehensive Medicaid services, or refusing promotions and pay raises to stay below the Medicaid line. In the process, caring parents are treated as abusive or neglectful and deprived of the chance to raise their children in ways consistent with their values and ideals.

The Family Opportunity Act would promote early intervention and ensure children's access to all medically necessary services. It would thus help restore family security and maintain family responsibility.

Access to Medicaid Is Crucial

If enacted, the bill would give states new flexibility and resources to serve children with severe disabilities.

• States could allow middle-income families with children who have mental or physical disabilities that meet the criteria for federal disability (SSI) benefits to "buy into" Medicaid on a sliding-scale basis. Maximum out-of-pocket costs would be adjusted to family income. Families who are required to accept employer-provided health coverage would still be able to buy into Medicaid to supplement the (usually limited) employer plan's coverage for a child with extensive needs.
• States could set up a demonstration program for children whose "potentially" severe disabilities do not yet meet the federal criteria but, without health care, would become severe enough to do so.
• States could apply for waivers of Medicaid rules to allow many children with serious emotional disturbance currently receiving inpatient psychiatric services in residential treatment facilities to receive less restrictive home- and community-based services. This could help states comply with the U.S. Supreme Court's 1999 Olmstead v. L.C. decision, affirming the right of individuals with disabilities under the Americans with Disabilities Act to live in the least restrictive setting appropriate to their condition (see http://www.bazelon.org/olmstead.html).
• States could receive funds to establish Family-to-Family Health Information Centers, staffed by parents and professionals to help families identify and access appropriate health care for children with disabilities.

Action Needed Now

• S. 321 and H.R. 600 have been referred to committee. Strong bipartisan support is needed to bring the bills to the House and Senate floor.
• Contact both of your U.S. Senators and urge them to co-sponsor or at least support S. 321, The Family Opportunity Act of 2001.
• Contact your Representative and urge him or her to co-sponsor or support H.R. 600, The Family Opportunity Act of 2001.
• Thank your Senator or Representative if he/she is already a co-sponsor of the Family Opportunity Act.
• It's especially important to contact your Senator or Representative if he or she is a member of the Senate Finance or House Energy and Commerce Committee, which have jurisdiction over the Family Opportunity Act (see box).
• Contact President Bush and urge him to make the Family Opportunity Act an administration priority. The White House telephone is 202-456-1414.

Make Your Message Clear!

• No child should be without health or mental health care. Period.
• The issue enjoyed broad bipartisan support in the last Congress It. applies across party lines.
• The Family Opportunity Act keeps families together and employed.
• Now is the time to enact the Family Opportunity Act. It's the right thing to do.

What You Can Do Now

• Call the capitol switchboard at 202-224-3121 and ask to be transferred to the office of each of your Senators and your Representative, or
• Write or fax a letter to:
  The Honorable (first and last name)
  United States Senate, Washington DC 20510
  and
  The Honorable (first and last name)
  United States House of Representatives
  Washington DC 20515
  
• E-mail is rarely read and we do not suggest using it at this point. However, whenever you do send e-mail to your Senator or Representative, always include your city, state and zip code in the message to identify yourself as a constituent. You can look up your Representative and find email forms at http://www.congress.org.

Make It Personal

If you have a personal story related to the problem of custody relinquishment or a child with a disability who can benefit from this legislation, be sure to share it with your Senators and Representative.