Foster Care: No Cure for Mental Illness
In the past few years, officials in New York, Vermont and Kansas say they have improved mental health services for children and reduced costs at the same time. They have also reduced the chances that parents will be driven to give up custody of their mentally ill children in a last-ditch effort to get them the services they need.
Those three states have adopted Medicaid waiver programs that help fund home- and community-based services for children with mental health needs whose incomes would normally disqualify them from receiving Medicaid benefits.
In Kansas, costs per child in 2003 under the state’s Medicaid waiver program were approximately $12,900 a year. Meanwhile, the cost of foster care per child was approximately $30,000 per year, while the cost for a child in the juvenile justice system was around $70,000 a year.
In Ohio, the Cincinnati Enquirer's news coverage of families pushed to surrender custody of their mentally-ill children led Governor Bob Taft to announce in April his intention to find a solution to the problem.
A Welcome First Step
The introduction of Medicaid waiver programs is a step that parents-turned-advocates like Alabama mom Linda Champion have long been hoping for. On April 28, she spoke before a Senate subcommittee meeting on children’s mental health.
Champion told the story of her 17-year-old son, Lee, who was diagnosed with a severe case of ADHD at the age of seven. He did well in school until the end of fifth grade when “the bottom fell out and our family embarked on a long downward spiral,” testified Champion.
“Our family was under siege without support or appropriate services…It placed enormous strain on our marriage and we felt like failures as parents. Yet we loved Lee. We understood that he was struggling with the symptoms of an illness and we were not about to give up on him.”
Unable to pay for the services Lee needed, the Champions ultimately gave up custody of Lee to the child welfare system so their son could receive treatment. To be eligible for Medicaid, a family of four with children between the ages of 6 and 18 could have a maximum income of $18,850 in 2004. Children in foster care are generally eligible for Medicaid regardless of the income of their families of origin.
Social workers recommended youth detention facilities with “therapeutic components” for mental health treatment. “Imagine our shock to find out that they were actually youth lock-up facilities—complete with razor wire and guards,” Champion testified.
Recent changes in the family’s health insurance coverage mean the Champions are now covered for mental health services at levels comparable to those for medical ailments. “…I am happy to report that Lee currently attends a private school in North Alabama, appropriately named Hope Academy,” said Champion. “More importantly, he is back in our custody…”
The Big Picture
Child welfare directors in 19 states and juvenile justice officials in 30 counties estimated that in fiscal year 2001 parents placed over 12,700 children into the child welfare or juvenile justice system for the sole purpose of getting mental health services for their children. That’s according to a U.S. General Accounting Office (GAO) report from April 2003, which encouraged a federal governmental action plan to address the problem.
Many of the children suffer from a variety of complex psychiatric problems and exhibit behaviors that threaten the safety of themselves and others. The costs for medical treatment, doctor visits and therapy often run into the tens of thousands of dollars per year, says Darcy Gruttadaro, Child and Adolescent Action Center Director at NAMI (the National Alliance for the Mentally Ill).
According to officials in six states that GAO investigators visited in compiling their 2003 report, limitations of both public and private health insurance, inadequate supplies of mental health services, limited availability of services through mental health agencies and schools, and difficulties meeting eligibility rules for services often lead parents to decide that their only option is to place their kids in foster care or juvenile detention facilities.
How Custody Relinquishment Happens
When faced with mounting mental health bills and children who still need lots of support, parents often look anywhere they can think of for help. Many go to state departments of mental health, local school districts, and community mental health providers.
Gruttadaro says that at that point, well-meaning child welfare officials sometimes tell frustrated parents that their best option may be custody relinquishment.
In 1999, NAMI issued a report called “Families on the Brink” that surveyed families the organization works with across the country. Twenty-three percent of families surveyed were told they had to give up custody to access mental health services. Gruttadaro believes that the percentage of parents being told to give up custody may be higher today.
Once the decision is made, parents often must go to court to enter a petition of dependency and neglect – and their names could be placed on state registries of child abusers. The ramifications are immediate: parents lose most day-to-day rights; then, they often learn the hard way that neither the child welfare nor the juvenile justice system are designed to serve children who have not been neglected or abused, or who have not committed a delinquent act. And, according to some child welfare advocates, these systems are notably poor at delivering mental health services.
“Matt” was adopted at age 7 after living with biological parents who sexually and physically abused him. Since living with his adoptive parents, Paul and Susan Mallamo, in Jefferson County, CO, Matt has been in numerous physical fights at school, has stolen from his family members, has almost killed the family dog, and has tried to set their house on fire.
He’s been diagnosed with a variety of personality and developmental disorders, as well as ADHD. He shows symptoms of post-traumatic stress disorder, depression and multiple other psychological disorders.
The Mallamos have been down many paths in the past year to get Matt help: They tried to have his needs met through Medicaid funding mechanisms in place at the Jefferson Center for Mental Health, a community treatment center – but were ultimately turned away. Paul says they were then left with two options: take Matt back home, or see him placed in the custody of Jefferson County Social Services, which would then enter a petition of dependency and neglect (the same legal procedure which had been utilized to remove Matt from his birth home in 1994).
Adamantly opposed to both choices, Susan asked if an appeal was possible. One of the center’s representatives said that an appeal would yield the same result. The Mallamos reluctantly gave up custody after the same representative told them that Matt would receive more services in the custody of social services than he received in their home.
The Mallamos thought Matt would be placed at Colorado Christian Home, but the Department of Social Services moved him into a therapeutic foster home just one week later, despite a court magistrate’s directive that he remain at the home. Paul says that in the few months Matt was in the custody of the state, he lived in four different foster settings, none of which were “therapeutic” for his son’s needs. Matt also picked up his first criminal charges and was expelled from two schools.
Because the case involves a juvenile, officials at the Jefferson County Department of Social Services say they cannot comment specifically on Matt’s case.
Finally, after hiring an aggressive attorney (whose services have cost almost $10,000) and contacting the media, the Mallamos were able to have Matt placed in a residential treatment center. Funding comes from Medicaid, the school district, social services, and the Jefferson Center for Mental Health. Paul and Susan are supposed to pay a portion of the costs, but Paul recently lost his job in social services. He believes his outspokenness regarding Matt’s situation was a factor.
Matt sees Paul and Susan once a week, and has begun visiting them on weekends. Susan expects Matt to be released from the residential treatment center in August. He’s now 15.
Mental Health Discrimination?
NAMI has recently developed a secure online story bank for families like the Mallamos to share their personal stories. To date, almost 100 families have written in regarding their own complicated tales of custody relinquishment and the child welfare and juvenile justice systems. A common thread that runs through the experiences is that of limited insurance coverage for mental health treatment.
In 1996, Congress passed the Mental Health Parity Act, which was supposed to help put an end to the problem of differential coverage for mental health services. However, the law doesn’t require group health plans and their health insurance issuers to include mental health coverage in their benefits package. Instead, it requires insurers that do offer mental health coverage to make sure the coverage is comparable to coverage for physical ailments.
Discriminatory treatment of mental health disorders by private insurers is a main reason that custody relinquishment happens, according to officials at the Bazelon Center for Mental Health Law, a national legal nonprofit that advocates for people with mental disabilities.
“If we have a kid with a heart condition, they can go to a treatment professional,” says Bazelon Center staff attorney Christine Vaughn, who has represented families that have been forced to give up custody. “But if you have a kid with a mental health issue, they go to foster care?”
“Keeping Families Together”
Vaughn and her colleagues strongly support the Keeping Families Together Act, a proposed bill in Congress. Advocates for children’s mental health say the bill promotes an alternative to the closed doors and fragmented systems that many parents face when they seek help for their children.
The bill, introduced last year by Senator Susan Collins (R-ME) and Representatives Patrick Kennedy (D-RI) and Pete Stark (D-CA), is specifically meant to “establish a state family support grant program to end the practice of parents giving legal custody of their seriously emotionally disturbed children to State agencies for the purpose of obtaining mental health services for those children.” It would increase the availability of home and community-based services and give states financial incentives to support such services.
The bill also addresses fragmentation between various agencies responsible for serving children. It calls for collaboration between federal, state and local agencies in these efforts.
Some members of Congress have expressed optimism about passage of the bill later this year.
NAMI members are hoping for a speedy passage. Gruttadaro, in fact, is currently scheduling Congressional visits to share some of the information the organization has gathered in their online story banks. “This gives us the opportunity to say, ‘We’ve heard from your constituents, and this is what they’re telling us.’ Now, let’s see them take action.”
Rob Capriccioso is a former staff writer for Connect for Kids.