Families at Risk: Issues in Custody Relinquishment
October 2006
 Download PDF Version
A child’s most important advocate is a caring parent. Sometimes, however, parents are forced to choose between retaining their role as primary caregiver and ensuring that their child’s mental health needs are met by the public system. Although a number of states have passed legislation or developed programs to respond to the problem of custody relinquishment, more remains to be done.
Parents of children with severe mental, emotional or behavioral disorders sometimes must give up legal custody to either the child welfare system or the juvenile justice system in order to access critically needed treatment. This is because children who are under the care of the child welfare system or the juvenile justice system are entitled to publicly funded services that families otherwise may be unable to access. Relinquishing custody can occur through a voluntary arrangement, in which a parent agrees to temporarily give custody to the state so the child can be placed in an out-of-home treatment setting, or through a court order that gives custody of the child to the state.1 In states where voluntary placement is not available, parents often must go to court and contend that their child cannot be cared for at home, or is abusive or at risk for abuse in order to obtain public funds for treatment services.2 Children of parents who arrange to voluntarily give up custody generally become clients in the child welfare system, whereas children of parents who seek a court order navigate the juvenile justice system.
In the public policy arena, there is a trend to prioritize measures that keep families intact and to provide a supportive family environment for children. Custody relinquishment, on the other hand, breaks up the family and potentially can cause significant upheaval in the lives of parents and children.3
Why Does it Happen?
The custody relinquishment issue is a component of larger issues that confront families that are attempting to navigate a complex system. For parents of children with severe mental health issues, accessing appropriate services can be confounding, and the financial burden can be debilitating. Private health insurance plans often have rigid restrictions on coverage for mental illnesses, resulting in inadequate coverage for children with severe disorders. In addition, although Medicaid services are comprehensive, only 25 percent of children meet the stringent income requirements. Children who are not eligible for Medicaid are not covered by a federal law entitling children to services for their mental illness, nor is a reliable source available of federal or state funding for mental health services. Conversely, although many children qualify for the Individuals with Disabilities Education Act (IDEA) and other programs that are designed to provide or finance services for children with serious emotional and behavioral disorders, the services provided may be limited.4 Families often must attempt to obtain services from a series of programs, but it may be difficult to obtain these services or the programs may be insufficient.
State agencies that provide mental health services include mental health, child welfare, housing, employment, juvenile justice and education. Funding mechanisms include Social Security, state and local appropriations, Medicaid and federal block grants. Rules, regulations, eligibility criteria and operational protocol differ among programs and effective communication across systems may be lacking. When parents are unable to obtain access to services, they may turn to the juvenile justice or child welfare system, where custody relinquishment may be presented as an option to help them obtain publicly funded services.
How Many Are Affected?
It is difficult to obtain data on the number of children affected by custody relinquishment. In 1999, the Bazelon Center for Mental Health Law found that, in about half the states, families reported that custody relinquishment occurred (although the center did not receive reports from every state). The U.S. General Accountability Office (GAO) found that, in fiscal year 2001, parents of more than 12,700 children placed their dependents in either the child welfare or juvenile justice system in order to access necessary mental health services. This number likely is understated, however, because it is based on responses from child welfare directors in only 19 states and juvenile justice officials in 30 counties. In fact, the five states with the most resident children were not able to provide data.5
Even in the absence of hard numerical data, however, the issue is an important one in mental health policy because of its profound effect on the family.
Existing Programs Are Insufficient
The Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program mandates that states regularly screen children enrolled in Medicaid for the entire range of mental and physical disorders. The federal EPSDT requirement also obliges states to provide necessary care and treatment to improve and correct both physical and mental health problems, regardless of whether the services are covered under the state Medicaid plan. Sometimes children do not receive the requisite screening that would reveal their emotional and behavioral disorders. Even when a screening is conducted and a mental illness is found, children may fail to receive the services to which they are entitled. Effectively implementing EPSDT’s screening, diagnosis and treatment obligations is the simplest and most effective approach to secure mental health services for children covered by Medicaid.6
A 2003 study of Medicaid behavioral health screening policies found that almost half the states (23) do not address behavioral health issues in their EPSDT screening tools, and primary care providers in many states do not receive guidance from Medicaid agencies on screening procedures to accurately identify behavioral health problems. Overall, the study concluded that very few states have policies in place that are likely to result in accurate identification of children with behavioral health disorders.7
The study also noted that standard tools are available for use in screening and urged states to use, for example, the Pediatric Symptom Checklist, which is the most commonly recommended standardized mental health screening tool.8 In another study, the Bazelon Center for Mental Health Law examined state screening tools for their success with the EPSDT mandate. The criteria the center determined were important for assessing screening tools were: fast administration, acceptance by parents, immediate availability of results, and inclusion of questions that are age-specific and that probe child and family background and substance use. According to the study, screening tools used in Illinois and West Virginia met most of these criteria.9 For more information, see http://www.bazelon.org/issues/managedcare/moreresources/epsdtfactsheet.htm.
Even when children qualify for Medicaid coverage, barriers remain. Families may live in an area that is not well-served by Medicaid mental health providers, or services may be unavailable. On occasion, parents have resorted to lawsuits to obtain services that are guaranteed under Medicaid law.10
The Individuals with Disabilities Education Act is a federal law that guarantees all children with disabilities (including those with serious emotional disturbances)—regardless of family income—a free and appropriate education that “emphasizes [tailored] special education and related services.” The scope and breadth of IDEA coverage often is not straightforward, especially in relation to coverage of residential treatment and intensive home and/or community-based services that the child needs to benefit from educational services. Many school districts do not provide services outside of the traditional school setting, even to children who need those services to benefit from their education.11
The federal entitlement under Title IV-E, the Foster Care and Adoption Assistance Program, benefits children who are in need of out-of-home treatment. For children in the child welfare system, Title IV-E pays states a large portion of the room and board costs of out-of-home placement. State officials may believe that guardianship for the child must be transferred to the state as a condition for federal reimbursement. In fact, custody relinquishment is not necessary—the law allows states to receive federal reimbursement after a child is removed from the home with a voluntary placement agreement.12
What the Federal Government Has Done
In 2003, a bipartisan group of congressional legislators sponsored the Keeping Families Together Act, which was aimed at building a more family-friendly service system infrastructure that focuses on home- and community-based services and addressing the custody relinquishment problem. The bill would accomplish this by providing grants to states to increase access to home- and community-based mental health services. The original version of the bill, as well as the identical reintroduced 2005 version (S. 380/H.R. 823), currently are pending in Congress.13
The Family Opportunity Act (FOA) is a component of the recently enacted Deficit Reduction Act of 2005. Beginning January 1, 2007, the FOA allows states to create options for families with disabled children—including those with mental and emotional disorders—to buy into Medicaid. Parents would pay for Medicaid coverage on a sliding scale.14 The program is voluntary—if states wish to implement the act, they will need to pass legislation or submit a Medicaid state plan amendment to that effect—and limited to families with incomes lower than 300 percent of the poverty level.
Another part of the DRA creates a new demonstration project to allow 10 states to pursue a Medicaid 1915(c) home- and community-based waiver as an alternative to psychiatric residential treatment. Under the current waiver rules, a state must show that the average cost of serving a child under a waiver will be the same or less than the average cost of serving the child in a hospital, nursing home or intermediate care facility. Since most states do not have children in these institutions for long periods of time, they cannot show that keeping the children at home would be less expensive. The new demonstration project will allow the selected states to meet the budget neutrality requirement by showing that keeping a child at home is less costly than having a child in a residential treatment facility (in which children often do spend long periods of time). This program represents a new opportunity for states to help children with severe mental health treatment needs receive home- and community-based mental health services.15
States must meet the following conditions as part of the demonstration project, according to NCSL’s Deficit Reduction Act of 2005: Summary of Medicaid/Medicare/Health Provisions:
(1) projects must meet the same terms and conditions that apply to all HCBS waivers.
(2) the Secretary must ensure that the projects are budget neutral; that is, total Medicaid expenditures under the demonstration projects will not be allowed to exceed the amount that the Secretary estimates would have been paid in the absence of the demonstration projects.
(3) applications for a demonstration project must include an assurance to conduct an interim and final evaluation by an independent third party and any reports that the Secretary may require.16
To be selected for the demonstration project, states will compete in a bidding process. At the end of its duration, the state may allow enrolled children to continue to receive the Medicaid home- and community-based services provided under the project, but no additional children could be added.17
What States Can Do
Two distinct state approaches exist to the problem of custody relinquishment. One approach prohibits child welfare agencies from requiring custody relinquishment for families in order to obtain mental health services for their child. The second views the problem as a symptom of an inadequate system and insufficient community based-services and aims to prevent families from having to go to the child welfare or juvenile justice systems for help.
Direct Legislative Actions
The most straightforward way to deal with the problem of families giving up custody of their children to obtain mental health services is to prohibit child welfare agencies from requiring the practice to access services. At least 14 states (Colorado, Connecticut, Idaho, Indiana, Iowa, Maine, Massachusetts, Missouri,18 Minnesota, North Dakota, Oregon, Rhode Island, Vermont and Wisconsin)19 prohibit custody relinquishment, and 11 states (Alaska, Colorado, Connecticut, Iowa, Maine, Minnesota, North Dakota, Oregon, Rhode Island, Vermont and Wisconsin)20 permit voluntary placement agreements between parents and the child welfare system that allow children to be placed outside the home without forcing parents to give up custody.
Oregon’s Voluntary Child Placement Agreement (VCPA), enacted in 1993 (ORS 418.312), is one example of a law that addresses the issue. The VCPA allows caregivers to voluntarily place their children in out-of-home care without relinquishing custody; families cannot be forced to give up children with severe disabilities because they cannot afford to pay for services. Before this legislation was enacted, caregivers had to choose from the unattractive options of signing a voluntary custody agreement, accruing loans to pay for out-of-home care, or continuing to keep the child at home without sufficient community supports.21
Implementation of the law has not been without problems. As part of a nationwide study on policies and laws related to custody relinquishment, the Bazelon Center contracted with the Research and Training Center for Family Support and Children’s Mental Health at Portland State University to assess implementation of the VCPA in Oregon. The study notes several limitations in implementation of the legislation: confusing forms; a lack of continuing training for state workers; inadequate knowledge of the VCPA among caseworkers; a lack of procedures for identifying, tracking or monitoring families that received assistance under the VCPA; and a lack of awareness by families of their rights and responsibilities under the VCPA. In response to these findings, the Oregon State Office of Services to Children and Families agreed to take steps to remedy the problems. This highlights the importance of training staff and families on such laws and various aspects of how they are implemented.22
Iowa’s law (C.I. 232.178) takes a different approach to the subject. It emphasizes ensuring that all practical steps have been taken to keep children with disabilities in their home. The statute gives the court power to order treatment for children both in and out of the home and prohibits the child welfare agency from taking custody. It requires that the petition for voluntary placement of a disabled child describe the reasonable efforts that were made to keep the child at home. If the court finds that reasonable efforts have not been made or that services or support are available to prevent the placement, the court may order the available services be provided to the child and the child’s family.23
As more states tackle the issue of custody relinquishment through laws that ban the practice, it is clear that these legislative solutions fall short of a holistic approach. To create an environment where custody relinquishment no longer is an issue, home- and community-based mental health services for children and their families may need to be expanded.
Redirecting funds is one avenue for expanding coverage. For example, the existing home- and community-based waiver program allows states to serve those whose incomes exceed regular Medicaid financial criteria and provide additional services. With the Medicaid 1915(c) waiver, states can choose to focus help on a particular group and can add services that their normal plan does not cover. As noted earlier, the existing program presents challenges for states as they seek to meet budget neutrality requirements. However, four states—Indiana, Kansas, Michigan and New York—currently have waivers that cover children with serious emotional disturbances. (Vermont had a 1915(c) waiver until October 2005, at which point it was rolled into a broader 1115 waiver).24 This allows families that would have potentially given up custody to instead obtain assistance through the state mental health agency.
A provision of the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA) is another Medicaid eligibility option to cover home- and community-based services for children with disabilities who live at home. Also called the Katie Beckett option, it allows states to qualify children for Medicaid based on their disability and care needs instead of on their family’s income. The purpose of TEFRA is to allow children who would qualify financially for Medicaid only in a medical institution to continue to qualify while they are served at home or in the community. Twenty states have the TEFRA option in place for children with disabilities, but few children have enrolled in Medicaid under this option. Moreover, in half of these states no children qualified because of a mental or emotional disorder; state rules can affect the degree to which children with mental disorders access the program. Even in most of those 10 states in which some children do qualify based on a nonphysical disorder, it is only a small percentage of participating children.25
The option to apply to be one of the 10 states that will participate in the new, previously mentioned DRA waiver demonstration project offers an additional alternative for expanding home- and community-based mental health services.
Promoting interagency communication and collaboration is integral to improving the mental health system. Mental health services often are complex and fragmented, and interagency collaboration is essential to support decision making with the family and those who work most closely with the family. Collaborating across agencies about service decisions and funding often is referred to as blending or braiding federal funds. “Blended” funds come from several sources, are combined into a single pool and then distributed to providers. “Braided” funds come from several agencies, each of which tracks and administers money that when braided together, pay for a child’s service package. In both cases, money from separate places is used to form a package of care for children. Blended funding offers more flexibility for state and local agencies, while braided funding allows resources to be tracked more closely and is more in keeping with the categorical nature of how services are funded.26
Wraparound Milwaukee, a county-based managed care program discussed later in this paper, functions with a blended funding pool, using capital contributed by Medicaid, child welfare, juvenile justice and mental health agencies. Vermont has developed creative community-based treatment plans for children using a braided funding system that incorporates child welfare, juvenile justice, mental health and special education funds.27
Program Implementation
Another way to change the care delivery system is to create local “systems of care” to provide more community-based programs that serve children with severe emotional and mental disorders. Because it is less expensive than relying on residential options, this approach frees more money to help more children. These multi-agency systems require collaboration and often blend funding from several sources. Many of the states that have taken this approach specify that custody relinquishment is not required to obtain services. This approach is successful only if sufficient funds are available to support necessary services. States that have taken this route include California, Georgia, Maine, Rhode Island, South Carolina, Vermont and Virginia.28
Georgia’s Multi-Agency Team for Children (MATCH) (49-5-220 through 49-5-226 or text of the bill at http://www.bazelon.org/issues/children/publications/stayingtogether/staying3.pdf) is an example of such a program. It combines funds from child welfare, mental health and Medicaid to form a system of care that serves children with severe emotional problems. One of the system’s objectives is to “preserve the sanctity of the family unit,” and it specifically states that the receipt of services is not intended to be based on relinquishing custody of the child to the state.29
New Mexico enacted legislation in 2004 to create an Interagency Purchasing Collaborative. It directed all state agencies that deal with behavioral health to develop a comprehensive, statewide mental health plan to identify all needs, increase implementation of evidence-based practices, and create and purchase a single behavioral health care delivery system for the entire state. The state uses a new braided/blended funding stream, with combined resources from all involved agencies and new state and federal funds. This model helps eliminate confusing, disjointed implementation.30 (For more information see the organization’s website at http://www.state.nm.us/hsd/bhdwg/. You can find the legislation at http://legis.state.nm.us/Sessions/04%20Regular/final/HB0271.pdf. The program is in the process of being evaluated, but for the initial pre-evaluation, see http://www.state.nm.us/hsd/bhdwg/pdf/MacArthurreport.pdf.)
The prime example, however, is Wraparound Milwaukee. This system of care is designed to reduce reliance on institutional-based care, while offering more services in the community and in the child's home. The program, started in 1995, grew out of a six-year, $15 million federal grant that the county received from the Center for Mental Health Services. One mission of the program is to promote collaboration among the child welfare, juvenile justice, mental health and school systems, in equal partnership with families.31
Evaluations conducted on Wraparound Milwaukee show that the program is producing positive outcomes among participants and saving money for the county. An article in the Juvenile Justice Journal reveals that the program can treat a child for less than $3,300 per month, in contrast to the more than $5,000 per month cost to place a child in a residential treatment center. Because these funds are reinvested into serving more youth, the project now serves 650 youth with child welfare and juvenile justice funds that previously financed 360 youth placed in residential treatment centers.32
In addition to the cost savings, youth are experiencing behavioral improvements after enrollment in Wraparound Milwaukee. When measured on the Child and Adolescent Functional Assessment Scale (CAFAS), the average score at the time of enrollment reflects a high range of impairment, but six months after enrollment, the average score decreased to a moderate range of impairment. These changes in CAFAS, a commonly used scale that measures changes in the youth’s functioning at home, at school and in the community, indicates significant improvements.33 This article is available at http://www.ncmhjj.com/resource_kit/pdfs/Treatment/References/WrapMilwaukee.pdf.)
Custody relinquishment is a fixable problem. Parents should not be forced to choose between taking responsibility for their child and ensuring that the child receives needed services. Legislation to ban custody relinquishment to obtain services can be helpful, but is not enough to eradicate it. If states seek to keep families intact, they may need to pursue other avenues, such as reorganizing the allocation of funds and creating strong, flexible and sustainable community-based programs.
Henry T. Ireys, Sheila Pires, and Meredith Lee, Public Financing of Home and Community Services for Children and Youth with Serious Emotional Disturbances: Selected State Strategies (Washington, D.C.: U.S. Department of Health and Human Services, June 2006). http://www.mathematica-mpr.com/publications/PDFs/pubfinhome.pdf
Henry Ireys, Lori Achman, and Ama Takyi, State Regulation of Residential Facilities for Children with Mental Illness, (Rockville, Md.: Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, 2006). http://www.mathematica-mpr.com/publications/PDFs/residfacilchildren.pdf
- Barbara J. Friesen et al., “Research in the Service of Policy Change: The ‘Custody’ Problem,” Journal of Emotional and Behavioral Disorders 11, no. 1 (Spring 2003): 39-47.
- Ibid.
- Ibid.
- Darcy E. Gruttadaro, “The Tragedy of Custody Relinquishment,” National Alliance on Mental Illness, http://www.nami.org/Content/ContentGroups/Legal/The_Tragedy_of_Custody_Relinquishment___NAMI_Legal_Center.htm.
- U.S. General Accountability Office, Child Welfare and Juvenile Justice: Federal Agencies Could Play a Stronger Role in Helping States Reduce the Number of Children Placed Solely to Obtain Mental Health Services (GAO-03-397) (Washington, D.C.: U.S. GAO, April 2003).
- Darcy E. Gruttadaro, “The Tragedy of Custody Relinquishment.”
- Rafael M. Semansky, et al., “Behavioral Health Screening Policies in Medicaid Programs Nationwide,” Psychiatric Services 54, no. 5 (May 2003): 736-739.
- Ibid.
- Bazelon Center for Mental Health Law, “Protecting Consumer Rights in Public Systems' Managed Mental Healthcare Policy: An Evaluation of State EPSDT Screening Tools,” http://www.bazelon.org/issues/managedcare/moreresources/epsdtfactsheet.htm.
- Darcy E. Gruttadaro, “The Tragedy of Custody Relinquishment.”
- Ibid.
- Ibid.
- Christine Lehmann, “Bill May End Painful Choice of Custody or Care,” Psychiatric News 40, no. 6 (March 18, 2005): 10.
- Deficit Reduction Act of 2005. Public Law 109-171. 109th Cong., Feb 8, 2006.
- National Alliance on Mental Illness, “New Opportunities for Intensive Home and Community-Based Services for Children with Serious Mental Illnesses,” State Medicaid Reform Toolkit (Arlington, Virginia: NAMI, June 2006).
- Joy Johnson Wilson, ed., Deficit Reduction Act of 2005: Summary of Medicaid/Medicare/Health Provisions (Denver: National Conference of State Legislatures, 2006).
- Ibid.
- Darcy Gruttadaro, director of the Child and Adolescent Action Center, National Alliance for the Mentally Ill, e-mail to author, September 6, 2006.
- Bazelon Center for Mental Health Law, “Parents Give Up Custody of Children for Mental Health Services, Says New Government Report,” http://www.bazelon.org/newsroom/archive/2003/4-21-03custody.htm, April 21, 2003.
- U.S. General Accountability Office, Child Welfare and Juvenile Justice: Federal Agencies Could Play a Stronger Role in Helping States Reduce the Number of Children Placed Solely to Obtain Mental Health Services.
- Barbara J. Friesen et al., “Research in the Service of Policy Change: The ‘Custody’ Problem.”
- Research and Training Center for Family Support and Children’s Mental Health, “Data Trends: Custody Relinquishment: Impact of Research on Policy” (Portland: Research and Training Center on Family Support and Children’s Mental Health, Dec 2000), http://www.rtc.pdx.edu/DataTrends/pgDT19.shtml.
- Bazelon Center for Mental Health Law and the Federation of Families for Children’s Mental Health, Staying Together: Preventing Custody Relinquishment for Children’s Access to Mental Health Services (Washington, D.C.: Bazelon Center for Mental Health Law, 1999).
- National Alliance on Mental Illness, “New Opportunities for Intensive Home and Community-Based Services for Children with Serious Mental Illnesses,” State Medicaid Reform Toolkit.
- Bazelon Center for Mental Health Law, Avoiding Cruel Choices: A Guide for Policymakers and Family Organizations on Medicaid’s Role in Preventing Custody Relinquishment (Washington, D.C.: Bazelon Center for Mental Health Law, 2002).
- Bazelon Center for Mental Health Law, “Blending or Braiding Federal Funds,” http://www.bazelon.org/issues/children/publications/mixmatch/blendbraid.htm.
- Bazelon Center for Mental Health Law, “Examples of Blended and Braided Funding,” http://www.bazelon.org/issues/children/publications/mixmatch/bbexamples.htm.
- Bazelon Center for Mental Health Law and the Federation of Families for Children’s Mental Health, Staying Together: Preventing Custody Relinquishment for Children’s Access to Mental Health Services.
- Ibid.
- New Mexico Interagency Behavioral Health Purchasing Collaborative, “Concept Paper: A Work in Progress,” http://www.state.nm.us/hsd/bhdwg/pdf/ConceptPaper0510.pdf, April 19, 2004.
- Milwaukee County Department of Health and Human Services, “Wraparound Milwaukee Background and History,” http://www.county.milwaukee.gov/display/router.asp?docid=10149.
- Bruce Kamradt, “Wraparound Milwaukee: Aiding Youth With Mental Health Needs,” Juvenile Justice Journal 7, no. 1 (2000): 14–23.
- Ibid.
|
This Policy Brief was prepared by the Forum for State Health Policy Leadership at the National Conference of State Legislatures, with generous support from The John D. and Catherine T. MacArthur Foundation. |
 Forum for State Health Policy Leadership
|
