Advocating for TEFRA and the Home- and Community-Based Care Waiver

Strategies for Advocacy

To accomplish these goals, advocates will need to present information to legislators and other policymakers in the state. The attached fact sheets will help begin this process. Policymakers will want:

• information that explains the federal rules on TEFRA and the home- and community-based waiver, the advantages to a state of adopting one of these approaches and the impact on families and children of failing to act (see Fact Sheet, Families Need Choices: Lack of Access Results in Custody Relinquishment to the State);
• information on why the TEFRA option is a good policy choice, including data from states with the option (see Fact Sheet, States Using the TEFRA Option for Children with Serious Mental Disorders);
• explanations of specific TEFRA rules that states need to adopt to ensure appropriate eligibility for children with mental and emotional disorders (see Fact Sheet, TEFRA (Katie Beckett) Medicaid Option: State Policies); and
• information regarding why the home- and community-based waiver is a good policy choice, including data from states with the waiver (see Fact Sheet, Rules on Home- and Community-Based Waivers for Children with Mental and Emotional Disorders).

Advocates will have to overcome inertia at the state level in adopting either of these Medicaid policies. Although lack of funding is often cited as a major impediment, states are already paying a high cost for services to children with mental health needs in their child welfare and juvenile justice systems. Moreover, both the waiver and the TEFRA option are more extensively used for children with developmental or other disabilities. The real issue is priority-setting, not an overall lack of funds.

Children with mental health care needs are victims of the continued stereotypes that their disorders are not real or that they will outgrow their behavior problems. Parents continue to be blamed, children’s needs remain ignored and services are denied. This pattern inevitably leads both to bad outcomes for the children and to high costs in other sectors of the state system. Advocacy and education are essential to overcome the stereotypes and encourage states to fill the gaps in mental health care coverage with a healthcare delivery system (Medicaid), instead of through the punitive systems of child welfare and juvenile justice. Some strategies to do this are presented here.

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