Families often suffer needlessly when making choices for treating mental health disorders

A recent report from the Bazelon Center for Mental Health Law in Washington, DC, paints a grim picture of the choices parents are forced to make to obtain mental health services for their children.

The advocacy group says that states are not using policy options available to them that would increase access to mental health services.

"States are failing children with mental health needs in many parts of the country," says Chris Koyanagi, Bazelon policy director, who wrote Avoiding Cruel Choices: A Guide for Policymakers and Family Organizations on Medicaid’s Role in Preventing Custody Relinquishment. "Laws already on the books could provide immediate relief for these families, yet few states are really using them."

Ms. Koyanagi tells State Health Watch that often those with private coverage face limits on the number of visits and the types of service that are covered.

"If a child has a serious disorder," she says, "it’s not enough to have a few sessions or limited access to medication. Families need a lot of support. There is a need for a public system, but access is getting tougher and tougher. It’s almost all Medicaid, and many families are not eligible because their income is too high but they still don’t have the money for a residential program."

The report charges that many families who can’t get mental health services for a child give up custody of the child to the state to be able to secure services.

"Custody relinquishment is absolutely devastating to the parent-child bond," according to Ms. Koyanagi. "It shouldn’t have to be this difficult for families to get services, and it wouldn’t be if states were making better use of Medicaid policy options for covering these children."

Two available policy options covered in the report are the TEFRA (Tax Equity and Fiscal Responsibility Act of 1982) option and the Medicaid waiver that allows states to fund home- and community-based services. Use of either of these options would allow states to cover children with significant mental disorders and dramatically reduce pressure on families to give up custody.

Ms. Koyanagi’s report cites statistics from the National Alliance for the Mentally Ill (NAMI) that some 20% of families of children with mental or emotional disorders were advised to give up custody to get help. When they do, NAMI says, they risk losing their children permanently since under federal law, states must work to place children who are in custody in adoption or back with their families within strict time limits.

Other parents are told to call the police and turn their children over to the juvenile justice system so they can receive mental health care. Ms. Koyanagi writes that reliance on the child welfare and juvenile justice systems tears families apart and misuses public funds. Among other consequences, children are led to believe they have been abandoned by their family, irreparably damaging the bond between child and family; parents are forced to make an unthinkable choice between retaining responsibility for and relationship with their child and giving decision-making authority and control to a state agency to get the help that is needed; public funds are wasted by keeping children as wards of the state when families who love them could provide for their basic needs; and children are forced into expensive residential placements rather than living in supportive families and receiving less costly community-based services.

Two available options

So what can be done? Ms. Koyanagi points to two avenues that states could pursue.

• The TEFRA option (also sometimes known as the Katie Beckett option, after the child whose situation led to the policy) allows states to cover home- and community-based services for children with disabilities living at home. It is for children who would otherwise need the kind of skilled care provided in a medical institution. Eligibility for TEFRA is based on a child’s disability and care needs, and not on family income. Children who qualify under TEFRA are given a Medicaid card, and all state Medicaid program rules apply, thus making them eligible for the full array of services covered for other Medicaid-eligible children.

• Home- and Community-Based Services Waivers are available for an expanded array of home- and community-based services to be furnished to children or adults with physical or mental disabilities as an alternative to institutional care that would otherwise be paid for by Medicaid. The waivers also permit states to provide Medicaid coverage to some children who otherwise would not be eligible for Medicaid. Children are eligible for waivers without regard to income. To receive federal approval for a waiver, states must show that the average cost of community care for all children in the waiver will not exceed the average cost of the institutional care that would be paid by Medicaid. A significant advantage of the waiver route is that states may expand the array of services for the children in the waiver. In three states with home- and community-based waivers for children with mental or emotional disorders, expanded services include respite care for the families caring for children at home, other family support services, and skill building.

Ms. Koyanagi says the TEFRA option has an important advantage over the waivers — TEFRA creates an entitlement for children who qualify, while under a waiver a state may limit the number of children who benefit. No one can be excluded from the TEFRA option based on limited state resources, diagnosis, or for any other arbitrary reason. An advantage of waivers over TEFRA is that states can expand the array of services available to children and families. States also may find waivers more attractive because they can accurately estimate the cost of the waiver and limit costs to funds available for their match of federal Medicaid dollars.

The report indicates that only 12 states use either approach to improve access to services for families whose children have a serious mental or emotional disorder and even in those states, the number of children benefiting from the policies is very small.

Only three states (Kansas, New York, and Vermont) have pursued a federal waiver for children with mental or emotional disorders; by contrast, 49 states have such waivers for people with developmental disabilities. Ms. Koyanagi says that many states considered seeking a waiver for children with mental or emotional problems but dropped it when they ran into barriers such as lack of state funds to pay the state share of Medicaid costs, a federal rule that prevents children in or at risk of placement in a residential treatment center from being eligible, and a requirement that community services be no more expensive than alternative institutional placement. She reports that experience of the three states that do have waivers shows that these barriers can be addressed and the per-child costs under the waiver are quite low.

Twenty states opted for the TEFRA option, but half of them have no children who qualified as a result of a mental or emotional disorder. Even in states with the TEFRA option, very few children participate, according to Ms. Koyanagi, and in most of those states, children with mental or emotional disorders are a small percentage of the small overall numbers. Compared to the total enrollment in Medicaid, enrollment in TEFRA is minimal.

Ms. Koyanagi says she is surprised that 30 states and the District of Columbia have not adopted the TEFRA option for children with disabilities since if the state requires a family to relinquish custody, it would be taking on responsibility for the entire cost of the child’s care, in contrast to the large federal share paid under TEFRA. It appears, she says, that state officials could benefit from learning more about the program and its use. From states already using the option, other state officials would like to know the number of children who have qualified, expenditures on services for these children, specific TEFRA rules used, characteristics of children who use the program, source of funds for state match, and plans and proposals developed to justify its use.

Ms. Koyanagi tells State Health Watch that in many states, the problem is one of priorities, with mental health very low in their scheme of things, and children very low within the mental health system. She says start-up costs often get in the way, as does the need to be willing to make an investment in community-based services as an approach.

Advocates for families of children with mental or emotional disorders are urged to review their state policies on TEFRA and home- and community-based waivers and push policy-makers to make changes needed to help families keep their child with a mental disability at home. In states that have not adopted either approach, policymakers should be asked to choose and adopt one. In the 10 states that have the TEFRA option but no qualifying children with a primary diagnosis of mental disorder, advocates should urge changes in the rules and criteria and greater effort to publicize the option to potentially eligible families.

In states that do have the TEFRA option and children with a primary diagnosis of mental disorder, check the number of children who qualify and if it seems low, urge state officials to make greater efforts to publicize the option to potentially eligible families. In states without a waiver, policy-makers should be urged to review its practicality for children with mental and emotional disorders.

Ms. Koyanagi says that making greater use of the TEFRA and waivers could dramatically reduce pressure on families to give up custody of their children. "It is a shame that so many families are suffering needlessly when we could so easily reduce the need to choose between a child’s mental health and preservation of the family," she says.

[To see the report, go to: www.bazelon.org. Contact Ms. Koyanagi at (202) 467-5730, ext. 118.]