The Bazelon Center for Mental Health Law

For Immediate Release: Tuesday, April 27, 2004

Contact: Christopher Burley, 202-467-5730 x 133 or leec@bazelon.org

"Keeping Families Together: Removing Barriers That Force Parents to Relinquish Custody of Their Children to Secure Mental Health Services

Testimony
of
Tammy Seltzer
Senior Staff Attorney
Bazelon Center for Mental health Law
Before the Finance Committee of the Ohio State Senate

(April 27, 2004)

Good morning. My name is Tammy Seltzer. I am a senior staff attorney for the Judge David L. Bazelon Center for Mental Health Law. The Bazelon Center is the leading national nonprofit, legal-advocacy organization representing people with mental disabilities. The center works to define and uphold the rights of adults and children with mental disabilities who rely on public services and to ensure them equal access to health and mental health care, education, housing and employment.

Thank you for the opportunity to share with you our knowledge about the custody relinquishment problem, including experiences of other states that have attempted to address the problem, specific comments on S.B. 192, and practical suggestions for what you can do to end this national tragedy. I applaud you for holding today’s hearing and for working to develop legislation that would move Ohio closer to eliminating custody relinquishment.

The issue we are here today to discuss has been a long-standing concern to the Bazelon Center. We have provided technical assistance to stakeholders, including states, worked with the media, including Time, Newsweek, ABC PrimeTime and others and have published two reports (Relinquishing Custody: The Tragic Result of Failure to Meet Children’s Mental Health Needs and Avoiding Cruel Choices: A Guide for Policymakers and Family Organizations on Medicaid’s Role in Preventing Custody Relinquishment) directly related to this issue. These reports document the underlying reason why custody relinquishment happens: a basic lack of access to appropriate and timely mental health services and supports for children in both the public and private sectors.

Custody relinquishment is all the more tragic because it does not and should not have to happen to one more child. Although I will talk about ways Ohio can maximize available federal funds, this is not a funding issue. Rest assured, if families are desperate enough to give up custody of their children to obtain mental health services, you are already spending more money than you need to in all the wrong places. Ohio’s citizens are paying a premium every time a family ends up in the emergency room because a child is at risk of hurting herself or others, every time a family must call the police because that’s the time they know someone will respond, every time a child with an emotional or behavioral disorder is locked up in juvenile detention, every time a child does not graduate from high school, every time a parent loses a job because they’ve had to leave work to deal with yet another problem at school, every time a family declares bankruptcy or loses their home because they poured all their resources into mental health services that weren’t covered by their insurance, every time a family loses its health insurance coverage because they’ve made too many mental health claims.

The question is not how much money you will spend, but how you will spend it. At its core, the task of eliminating custody relinquishment is about philosophy, not funding—do we care enough about the sanctity of families to support them before they are ready to implode for lack of help? The answer in Ohio seems to depend on which county the family lives in.

That should be unacceptable to anyone who cares about children.

S.B. 192 is a step in the right direction, attempting to create a safety net for families who have reached a point where their children need out-of-home care. Based on our observation of similar legislation in other states, S.B. 192 will not eliminate the systemic failures that brought these families to the brink custody relinquishment; it does not require the system to intervene earlier to provide intensive in-home and community-based supports and services that could prevent most out-of-home placements. I would encourage you to use S.B. 192 as a launching pad for a comprehensive and deliberate plan to ensure access to preventive mental health services and supports for all families of children with serious emotional and behavioral disorders. There are plenty of tools you can use to make this goal a reality—a Home- and Community-Based Services waiver under Medicaid, implementation of Medicaid’s TEFRA or Katie Beckett option, insurance parity, to name a few. As any good do-it-yourselfer knows, however, having the right tools does not mean anything unless you know how you’re going to use them. Without the state’s unequivocal commitment to supporting families, such as the passage of S.B.192, the knowledge that counties may, at their discretion, be able to prevent custody relinquishment means nothing to the families unlucky enough to live in counties that chose not to address this tragedy.

During my testimony, I will describe how other states have addressed the issue by passing legislation that forbids custody relinquishment for children solely for the purpose of obtaining mental health services and legislation similar to S.B. 192, which authorizes voluntary placement agreements. I will also describe other reforms undertaken by states, such as taking advantage of increased flexibility through Medicaid’s Home- and Community-Based Waiver and the TEFRA or Katie Beckett option, enacting insurance reform, and strengthening enforcement of the Individuals with Disabilities Education Act (IDEA).

At its essence, custody relinquishment is about our failure to meet the needs of families with children who have emotional and behavioral disorders--a failure that is tearing apart families and putting children at risk. It is our hope that these proceedings will encourage you and your fellow lawmakers to support specific legislation to end this unnecessary tragedy.

Background

First, let me provide the committee with a brief overview of the custody relinquishment problem. All states, not just Ohio, are grappling with custody relinquishment. For fiscal year 2001, with fewer than half of the states responding, the US General Accounting Office (GAO) documented at least 12,700 cases nationally of children placed in child welfare and juvenile justice systems so they could access needed mental health services. Approximately one-third of the children were placed in child welfare systems; the other two-thirds were “placed” in the juvenile justice system by police who had detained children--sometimes at the parents’ request--for delinquent behaviors that stemmed from or were related to their mental or emotional disorders.
In Ohio, a review by the Cincinnati Enquirer estimated that as many as 1,800 children with emotional and behavioral disorders have been turned over to government custody in the last three years solely to obtain mental health services. At least 38 of the state's 88 counties acknowledge taking custody of children because of mental health needs. County officials were reported as saying that obtaining custody is the only way they can access Federal money to cover treatment costs. These Federal funds were originally set aside to help counties care for abused or neglected children. In Ohio, according to the state’s own assessment, children’s access to mental health services is “substandard.” Where children and youth need services and supports, they are not provided early enough or in sufficient supply.

Custody relinquishment represents the failure of all child-serving agencies to work together in a coordinated fashion to meet the needs of families before they reach such a crisis point that institutional care seems and may be the only alternative. After years of asking for help that never comes, after months or years without sleep, after losing their jobs and even their homes, families who would prefer to care for their children at home reach a point where they will consider no alternative but an out-of-home placement.

When families are uninsured or have exhausted their private insurance benefits, both mental health providers and public child welfare agency staff often advise parents that relinquishing custody of their child to the state is the only way to obtain services. Custody relinquishment carries with it a host of negative outcomes, including making children feel abandoned by their family. It also leads to children being placed in more expensive and less supportive residential placements. Residential treatment centers, according to the 1999 Surgeon General’s Report on Mental Health, are the second most restrictive form of care for children with severe mental disorders (next to inpatient hospitalization) with only weak evidence for their effectiveness. Additionally, parents have no say in their children’s day-to-day activities--what they eat, what they wear, who their friends are. They may not even know where their children are. Ultimately, children who need the most emotional support and stability are being ripped from their homes to live with complete strangers.

At the Bazelon Center, we consistently hear from families that when they seek help for their children, they are offered none. Instead, they are encouraged to call the police to “document” the problem or pushed to give up custody to the foster care system. S.B. 192, if improved, can be an important first step in ending this appalling practice in Ohio.

State Initiatives to Address Custody Relinquishment

States have attempted to use various tools to address custody relinquishment. They have enacted statutes that prohibited the child welfare agency from requiring custody relinquishment to access mental health services and that granted jurisdiction to courts to order mental health treatment or care. They have also strengthened enforcement of Medicaid’s entitlement to services and the enforcement of the Individuals with Disabilities Education Act’s entitlement to educational and related services. Lastly, some have built comprehensive mental health services for children and families using various federal and state tools.
None of these initiatives are free. All have start up costs. However, states that have reduced institutional placements find that they save money while saving families.

State Statutes Addressing Custody Relinquishment

Thirteen states currently have some type of legislation that prohibits child welfare agencies from requiring custody relinquishment in order for families to gain access to mental health services. More than half of these states permit voluntary placement agreements like those found in S.B. 192—e.g., Oregon, Idaho. The main advantage of such a statute is that it attempts to stop the practice at one point of origin—i.e., the child welfare system. The experience of other states that have used this approach is instructive. The disadvantage, they have found, is its failure to address the underlying cause of the problem—i.e., the lack of intensive community-based mental health services. Parents are still forced to work with an agency that is primarily designed for abuse and neglect cases. Placements are made primarily out of the home and frequently out of state, so the child loses contact with family and the community even though parents still technically retain custody. Many residential treatment centers are accustomed to making decisions about children without involving parents and do not understand the implications of a voluntary placement decision. Officials in the states we have spoken to say that an outright prohibition on custody relinquishment and reliance on voluntary placement agreements, without more, did little or nothing to reduce the incidence of custody relinquishment.

Although the bill before you uses a voluntary placement approach, the drafters have learned some lessons from other states’ earlier experiences. First, S.B. 192 requires inter-agency coordination, a key component to meeting the needs of a child with serious emotional and behavioral problems. Second, the legislation clearly states that parents are to have access to their children, a role in all decisions made about their care, and a mechanism for challenging any decisions with which they disagree. Perhaps most important of all, it explicitly considers the least restrictive environment for the child. Although the statute is designed to address only out-of-home placements, it attempts to reduce reliance on residential treatment centers by offering therapeutic foster care as a less restrictive alternative.

A child in therapeutic foster care is placed in a home with foster parents who have special training in working with children who have emotional or behavioral problems. Unlike residential treatment centers, the benefits of therapeutic foster care are supported by research. According to the evidence, children in therapeutic foster care show decreases in aggressive behavior and increases in positive adjustment. Compared with the usual care children receive in the community, therapeutic foster care led to fewer re-institutionalizations, more rapid behavioral improvement, fewer incarcerations, and more frequent placement with parents or relatives in the year after treatment. The cost of therapeutic foster care is significantly lower than other institutional alternatives, such as residential treatment centers. One therapeutic foster care model that has been studied extensively found that a therapeutic foster care slot averaged $1,000 per month per child; residential treatment centers can cost half of that or more per day.

The least restrictive setting provision of S.B. 192, Sec. 5103.42, states that “A voluntary placement agreement shall . . . [p]rovide for the public children services agency to place the minor child in a treatment foster home or residential treatment facility that is appropriate and the least restrictive environment available for the minor child.” (emphasis added) For the legislation to be effective, the word “available” must be changed to “appropriate.” As currently worded, if it is determined that a therapeutic foster home is the most appropriate and least restrictive setting for a child, that child could end up unnecessarily placed in an institutional setting for lack of an available slot. From a therapeutic perspective, such a placement would be a tragedy for the child and the family. It would also be fiscally irresponsible, forcing the children’s service agency to pay for the most expensive care when less expensive care is recommended.

If the legislation is modified to change the least restrictive provision to “least restrictive environment appropriate,” then S.B. 192 should be approved as the first step in your campaign to eradicate custody relinquishment.

Insurance Reform

Insurance reform is another area where state action is necessary. For parents who have insurance, Ohio should ensure that insurance companies cover the range of mental health services that would prevent custody relinquishment and cover them without arbitrary limits. Enacting mental health parity legislation, which I understand has passed the Ohio House and has been referred to the Senate Insurance Committee, would be an essential first step. Parity legislation would help these families by prohibiting private insurers from denying access to needed services because of stigma and discrimination through current limitations and restrictions on mental health care that are not placed on physical health care. Again, parity alone will not solve the problem, but when combined with efforts such as S.B. 192 it would represent significant progress.

Opportunities Under Medicaid

States that have made the most progress addressing custody relinquishment have taken advantage of the federal Medicaid program to expand eligibility and services. Although many states have expressed concerns about expanding Medicaid during state fiscal crises, such concerns are unwarrented. States that have used the Home- and Community-Based Services Waiver and the TEFRA or Katie Beckett option have seen cost savings and better outcomes for families.

Home- and Community-Based Services Waiver

The Home- and Community-Based Services (HCBS) Waiver is a critically important tool for preventing out-of-home placements. Under the waiver, states have considerable flexibility. They can limit the number of slots, target certain geographic regions, and the waiver can be initiated with a relatively small state investment. Furthermore, the costs of the wavier services are offset by institutional savings, a federal requirement. States already know how to successfully implement the HCBS waiver—49 states, including Ohio, already use the waiver to provide services to children with developmental disabilities.

Although almost all the states have successful waiver programs for individuals with developmental disabilities, they have been slow to utilize the same waiver for children with emotional and behavioral problems. Indiana recently became the fourth state to use the waiver in this manner. Vermont, New York and Kansas, the first three states to take advantage of the HCBS waiver to provide more flexible services to children with mental or emotional problems, have found that the costs of serving these children in the community is about half of what would be spent on institutional care. For example:

1. Kansas: Average annual per child costs are $12,900, compared with institutional costs of $25,600

2. Vermont: Average annual per child costs (2001) were $23,344, compared with inpatient costs of $52,988

3. New York: Approximate annual per child costs (2001) were $40,000, compared with institutional costs of $77,429

These waivers have reduced custody relinquishment and led to positive outcomes in schools. The Surgeon General’s Report on Mental Health discusses the strong record of effectiveness for home-based services that provide intensive services within the homes of children and youth with emotional and behavioral disorders. Most important, under the Home- and Community-Based Services waiver, families remain intact.

TEFRA or Katie Beckett Option

The TEFRA option is another important tool for expanding access to Medicaid that Ohio does not currently elect. TEFRA, or the Katie Beckett option as it is sometimes called, allows states to cover home- and community-based services for children with disabilities who would otherwise need the kind of skilled care provided in a medical institution. Eligibility is based on the child’s disability and care needs, not on family income, extending Medicaid benefits to families who would otherwise not qualify. Unlike the HCBS waiver, which requires an application for federal approval, states may select the TEFRA option like any other optional service or program under Medicaid.

Twenty states have selected the TEFRA option for children with disabilities. Half of these states have used the option to provide services for children who have a mental or emotional disorder. In 2001, Wisconsin, for example, used TEFRA to provide Medicaid services to 262 children whose primary diagnosis was a mental disorder. That same year, Minnesota served 581 children through the TEFRA option. All states that elect the TEFRA option should be using it for all children with disabilities because there is nothing in the program requirements that would exclude children with mental or emotional disorders. TEFRA benefits children with the most serious health and mental health needs--children who face the greatest risk of being the victims of custody relinquishment practices.

Ohio should examine the feasibility of using the HCBS waiver and the TEFRA option to meet the needs of children with mental and emotional disorders who are now ending up in the child welfare system and institutional care for lack of appropriate services.

Special Education

Most children who receive mental health services receive them in school. Students with emotional and behavioral disorders (termed emotionally disturbed under the Individuals with Disabilities Education Act, IDEA, the federal law requiring special education) have been recognized as among the most under-identified and under-served students with disabilities. Something is obviously wrong when the U.S. Surgeon General estimates that nationwide five percent of all school-aged children have mental disorders and “extreme functional impairment” and 11 percent have mental disorders with “significant functional impairment” while, for more than two decades, the national rate of students identified with emotional disturbance under IDEA hovered just under one percent. By 2001, the rate of identification under IDEA had fallen to 0.74 percent. Data suggest that schools may be failing to correctly identify four-fifths of children with mental or emotional disorders serious enough to adversely affect their educational performance.

Even when students with emotional and behavioral problems are identified as needing special education services, schools often fail to deliver the positive behavioral supports required by the 1997 amendments. Research demonstrates that schools’ use of positive behavioral interventions and supports can significantly reduce discipline problems, improve attendance, reduce referrals to special education, and have other benefits. (see the recent Bazelon Center publication Suspending Disbelief). Instead, without the necessary interventions, students’ problems worsen, escalating to a point where parents lose their jobs because they must stay home with children who are repeatedly suspended or expelled or the juvenile authorities are called to arrest the child. Every parent we’ve come into contact with who has been faced with the decision to relinquish custody describes a deteriorating school situation as a significant factor.

If custody relinquishment is to be reduced or eradicated, schools must be part of the solution.

Conclusion

Many states are struggling to address the custody relinquishment tragedy. Ohio is in a position to learn from the experiences of other states as they have attempted to fashion appropriate remedies. Statutes, like S.B. 192, that prohibit child welfare from requiring custody relinquishment in order for parents to obtain mental health services for their children are a starting point. They can provide a safety net for families whose circumstances have become so dire they feel they have no other choice but out-of-home placement. Legislation like S.B. 192 must be coupled with efforts to address the underlying cause of custody relinquishment—i.e., the lack of mental health services. The success of states like Kansas, which operates the largest HCBS waiver program targeted at children with serious emotional and behavioral problems, shows that there are other powerful and fiscally responsible tools available to ensure that children can be served in the community. No matter what the approach, there must be a commitment from all child serving agencies, the executive branch, and this legislature that families are important enough to warrant support that will enable them to remain intact. With the right system in place, very few families should ever need to use the safety net proponents of S.B. 192 seek to create.

In conclusion, I again want to thank you for holding this important and timely hearing. Far too often, in order to get essential health and mental health services for their child, caring parents must choose between living in poverty in order to keep custody or giving their child up to the state so the child can qualify for needed care. Too many children with mental or emotional disorders and their families have suffered too long for the system’s failures. I end by stressing that custody relinquishment is not a rational choice for society--and it is no choice at all for families. In all cases, the societal costs of custody relinquishment greatly exceed the cost of adequate and preventative health and mental health treatment. I urge you to take the necessary legislative action to ensure greater access to mental health services and supports and greater oversight to ensure that existing programs are used to their fullest potential to help families at risk of custody relinquishment.
I would be happy to answer any questions you might have.