The system in Kansas employed to make mental health services available for children with serious emotional disturbance is being used as an example nationally to demonstrate how to avoid placing parents in the gut-wrenching position of having to turn a child over to the state in order to meet his or her needs.

The national attention is in a report by the Bazelon Center for Mental Health Law called "Relinquishing Custody, The Tragic Result of Failure to Meet Children’s Mental Health Needs," published in March. The Bazelon Center is a leading national legal advocate for adults and children with mental disabilities based in Washington, D.C.

The authors point to the Kansas Home and Community Based Waiver for children with serious emotional disturbance (HCBS/SED) as a system that enables children to access mental health services without the children entering state custody. They say the system, put in place by the Department of Social and Rehabilitation Services (SRS) in January 1998, should be copied nationally. The report points out that in the vast majority of states, many families are forced to give up custody of their children in order to access mental health services for their children.

Kansas is one of only four states which have requested and received a waiver for children with serious emotional disabilities. Since its inception in January 1998, 1,335 children have been served under the program.

"The combination of a strong, informed family advocacy organization, some committed local providers, and dedicated, knowledgeable state staff has produced excellent outcomes for children," according to the report. "Overall, the Kansas waiver program is serving many families who otherwise would have faced desperate choices."

Deborah Edwards is a Kansan who knows about these desperate choices. Long before the HCBS/SED waiver was initiated in this state, Ms. Edwards was forced to give up custody of her son Aaron in order that he receive the mental health services he needed for severe emotional disturbance. Ms. Edwards was forced to do this in 1987 because she was out of insurance after Aaron’s previous treatments for emotional problems.

Sadly, another of Ms. Edwards sons died in a drowning accident. She said losing a son to the state was a similar experience to the tragic death.

"It’s a tremendous loss," she said. "And I cannot begin to tell you what it does to a person’s self-esteem. But it was the only way I could get services."

Aaron eventually left state custody and moved back in with his mother. Today, he is doing well, his mother reported. At the time, however, very few services for children were available. It is from hearing about experiences like hers that the idea for the waiver program was conceived.

A waiver program "waives" certain Medicaid requirements; in Kansas, the waiver allows the state to disregard the amount of parental income when determining whether a child with serious emotional disturbance is eligible for services. Accordingly, children who would not qualify for Medicaid mental health services because their parents’ income is too high are now eligible for a wide array of services. This keeps families from having to put their children into state custody in order to obtain the services.

Besides making all Medicaid health care services available to families, the HCBS/SED waiver provides for additional services to children with serious emotional disturbance, including parental support, coordination of treatment, and respite care. As a condition of receiving the waiver, the state must show that waiver costs are less than the cost of state hospitalization.

SRS Secretary Janet Schalansky praised the work of the Governor, the Kansas Legislature, local advocates and providers, and state staff for recognizing that families need access to mental health services. She said the HCBS/SED program offers hope to those who otherwise could face difficult choices.

"This waiver offers help for families in dire need," she said.

The Bazelon Center published the report to call attention to the fact that in many states, families are being forced to relinquish custody of the children in order to get needed mental health care for a child. The center said the reason parents often are forced to relinquish custody to get mental health services for children is because of limits on health care coverage, misunderstandings about special education, and misinterpretations of child welfare law

Page Last Updated: May 29, 2001