National Association of Psychiatric Health Systems
Youth Services Leadership Forum
November 5 – 6, 2003

OVERVIEW

Joan Mele-McCarthy
 Special Assistant to Dr. Robert H. Pasternack (Assistant Secretary for Special Education and Rehabilitative Services, U.S. Department of Education)

Joan joined NAPHS for dinner and had a chance to talk with members informally about challenges in providing special education services to children with serious emotional disorders (SED) in residential treatment and special education schools.

Marguerite Sallee
Staff Director, Subcommittee on Children and Families
Senate Health, Education, Labor, and Pensions Committee

Marguerite shared her insights regarding the pressures Congress is under as well as some strategies for successful lobbying as follows:

  • A balanced approach is needed – especially in the Senate where both Democratic and Republicans are needed to pass any piece of legislation.
  • Members of Congress listen carefully to determine whether or not you are a voting constituent.
  • Members and staff are deluged with information. To get your point across, boil down your message to a 3- to 5-minute presentation. Be sure written materials are 1- to 2-pagers with bullets.
  • In communicating with Member of Congress and their staff members, use e-mail and fax along with a phone call.
  • In presenting your problem, keep it simple and propose a reasonable solution.
  • Competition for attention and resources is extremely tough- especially in a budget deficit. It is important to be assertive and persistent to get your message across.
  • Invite your Member of Congress to visit your facility. Real-life stories and experiences with the children that you serve are important. Be sure to provide opportunities for your Members of Congress to meet with your Board or parents. Don’t forget to help organize positive media.
  • Political Action Committee contributions are a fact of life and an important way to secure attention for your issue.

David Cleary
Professional Staff Member, Majority
 House Committee on Education and the Workforce

David spent a significant amount of time listening to the concerns of participants and engaging in an interactive discussion with participants about reimbursement and educational policy issues. He agreed with the Senate perspective that states have the responsibility to assure reimbursement for educational services rendered to children with SED who are in residential treatment centers and special education schools.

He also provided a brief report on the status of reauthorization of the Individuals with Disabilities Education Act (IDEA) as follows:

  • The House passed its version of the IDEA legislation (H.R.1350) in April 2003. The bill is a Republican measure and will require schools to assure that each child achieve adequate yearly progress (AYP) and to reduce over-identification of children with special needs and un-necessary litigation as they legislate new provisions related to discipline.
  • The Senate Health, Education, Labor and Pensions Committee is about to report its measure (S.1248) out of Committee for the consideration of the full Senate.
  • Once the Senate has acted, the two measures must have conferences and agreements worked out before the legislation can be sent to the President. It is possible that this could occur in early 2004.
  • He is aware of some of the concerns about reimbursement and would certainly consider including language that might be included in the Senate report to address reimbursement for educational expenses.

Stephanie Smith Lee
Director, Office of Special Education Programs, Office of Special Education and Rehabilitative Services, U.S. Department of Education

Stephanie engaged in an active discussion with NAPHS members as a follow-up to the discussion held with David Clearly. She listened and responded thoughtfully to questions and shared information about Department of Education initiatives. She expressed support for resolving issues related to reimbursement as well as for the need to assure coordination of services. Stephanie will follow up with NAPHS Director of Government Relations Kathleen Sheehan after the Senate has released the bill and report approved by the Senate Health, Education, Labor, and Pensions Committee. She is also willing to meet with NAPHS members in the future to try to address specific concerns and to provide technical assistance on issues.

Joel Miller
Senior Policy Advisory on Health Initiatives
National Alliance for the Mentally Ill

Joel Miller provided tips for how to use materials that NAMI has developed for national- and state-level advocacy on Medicaid at the Youth Services Leadership Forum.

  • NAPHS and NAMI regularly work together on issues. Several of the top priorities of the moment are focusing attention on the need for acute care, focusing attention on the importance of Medicaid funding to mental health, and securing passage of federal legislation to remove the Institution for Mental Disease exclusion in Medicaid which restricts access to care for adults.
  • NAMI has developed a Medicaid toolkit that contains a wealth of information that can be used to educate national and state policy makers about the importance of Medicaid funding to mental health services.
  • Medicaid now pays for more than 50% of the public mental health services that states administer, and it is expected that Medicaid financing of mental health services will reach 60% by 2007.
  • The beneficiaries of these services represent 30% of the Medicaid “high-cost” enrollees. Depending on the state, between 25% and 50% of persons receiving state mental health services receive them only from Medicaid.
  • To download the NAMI toolkit free of charge go to http://www.nami.org. Under the Inform Yourself heading, select About Public Policy. Then select Issues Spotlight and choose the Medicaid option. At the Medicaid page, select Medicaid: An Overview, and finally, click on Medicaid Facts - What You Need to Know.

Joy Wilson
National Conference of State Legislators, Director, Federal Affairs Counsel, National Conference of State Legislatures

Joy provided tips on how to approach state legislators and win support for legislative efforts as follows:

  • Most state legislators have very short and intense sessions. Unlike the federal government, many state legislatures are constitutionally required to balance the budget, so budget pressures are particularly intense.
  • State legislators are often subject to term limits or turn over on a regular basis because they have full-time careers in addition to their role as state legislators. Your educational efforts with state legislators should be a regular part of the work you do, not just something done once a year.
  • Many state legislators are required to submit a notice that they plan to offer legislation or a copy of a draft bill before the legislature goes into session. Be sure that your educational outreach occurs before and after the legislature is in session.
  • Many state legislators do not have staff or have limited staff. Plan to do most of the legwork if you want your bill to be introduced – including researching the issues and developing support within the legislature and with other organizations. It is also important to addressing concerns raised by opponents whenever possible, and help to determine what the real cost will be.
  • A large part of the legislative process is preventing cuts or legislative decisions that will hurt your program. Stay well informed and be pro-active in educating members about your issue.
  • Encourage your state legislator to visit your program, help to plan community forums, and help to enlist the support of positive media attention.
  • Political contributions are a fact of life.

Cindy Mann
Research Professor, Health Policy Institute, Georgetown University

  • Now the largest source of health coverage in the nation, Medicaid covers 8 million people with disabilities and 5 million seniors. It is the largest source of financing for long-term care.
  • Medicaid covers millions of families with children who are not offered or cannot afford employer-based coverage. It covers nearly 1 out of 4 children and finances 40% of all births.
  • Medicaid is the program Congress and most states have turned to over the years to expand coverage to the uninsured including “phase-in” of poor and near-poor children, youths leaving foster care, and people with HIV.
  • Key elements of Medicaid reform discussed during this session of Congress include: 1) capped federal payments to states, 2) state matching payments replaced by “maintenance of effort” (MOE), 3) broad new flexibility over program rules.
  • Flexibility can mean a lot of different things such as:
    • Cap enrollment and discontinue Medicaid as an entitlement program,
    • Charge premiums and co-pays with no federal standards,
    • Cover people (or provide benefits) in some parts of the state, but not others,
    • Provide different benefits for different groups of people,
    • Offer “bare bones” benefit package for some groups,
    • Provide home and community based services without a waiver, but also without federal standards/entitlement.
  • Medicaid reform could be on the front burner next year. Mental health advocates should continue their efforts to educate Congress about the importance of Medicaid funds to mental health.
  • Challenges include:
    1. assuring federal revenues are there to finance coverage, particularly in light of the aging population,
    2. little hope for continuation for the temporary increase in the Federal matching rate,
    3. states will be looking for tools to help reduce and control costs as well as flexibility to address specific programmatic issues.
  • Other federal legislation in 1997 gave states new flexibility in Medicaid without capped payments.
  • One of the top priorities of Governors and many Medicaid advocates is getting Federal help for those who have “dual eligibility” for both Medicaid and Medicare. Currently Medicaid is picking up the deductibles, out-of-pocket costs, and other expenses of poor seniors who are on Medicare. This problem will increase as the population ages and Medicare must assume greater responsibility.

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