Testimony

Statement by
Charles G. Curie, M.A., A.C.S.W.
Administrator, Substance Abuse and Mental Health Services Administration, Dept. of Health and Human Services
on
Parents of all Socioeconomic Backgrounds
before the
The Senate Committee on Government Affairs, United States Senate

July 17, 2003

Introduction

Good morning Chairman Collins and Members of the Committee. I am Charles G. Curie, M.A., A.C.S.W., Administrator of the Substance Abuse and Mental Health Services Administration (SAMHSA) at the U.S. Department of Health and Human Services.

On behalf of the Department, it is an honor to be here to provide the insights of the Department into the plight of millions of families across the country who are struggling to meet the needs of their children with serious emotional disturbances. I am speaking, in particular, about parents of all socioeconomic backgrounds who find that they must relinquish custody of their child to State welfare or juvenile justice systems solely to enable that child to get the mental health care he or she needs. This was the focus of the GAO Report "Federal Agencies Could Play a Stronger Role in Helping States Reduce the Number of Children Placed Solely to Obtain Mental Health Services", a report we found comprehensive and valuable because it brought further attention to an unacceptable problem.

The DHHS particularly SAMHSA, the Centers for Medicare and Medicaid Services (CMS), and the Administration for Children and Families (ACF) knows this situation is a significant and unacceptable one in which too many American families find themselves. We know this because we are aware of and have been grappling with the larger constellation of issues that can lead parents to this difficult decision issues such as gaps in health care coverage, inadequate coordination of community-based services, and stress that can arise with a serious, chronic family illness. We know the significant scope and range of the problem, since as many as five to nine percent of children and youth in America experience serious emotional disturbances illnesses of a magnitude that can compromise their ability to learn, to work, to engage in family life and the life of their community. These are the very kinds of illnesses that can and do lead to placements in the child welfare or juvenile justice systems. Yet, wherever these children and youth find themselves, whether at home, in residential treatment, or in the child welfare or juvenile justice systems, well over half never get the treatments and services they need.

Through its words and deeds, and consistent with the imperatives of the President's New Freedom Initiative promoting community-based services and community living choices for people with all types of disabilities, and the Supreme Court's Olmstead decision, the Department of Health and Human Services has been working including work in collaboration with the Departments of Justice and Education to identify those issues and to seek solutions. Testimony that you heard on Tuesday described how just a few of those programs and activities are making a difference in States, communities and families across the Nation. As you requested, I would like to take a few moments to describe those initiatives and activities, and how we are coordinating across agencies and Departments. In many cases, these are not simply promising practices that need evaluation. Rather, they are practices and programs with robust and still-growing evidence of success that can be modeled and adapted in States and communities across the country.

THE AGENCIES

Administration for Children and Families

From the child welfare perspective, foster care is sometimes the vehicle through which parents of children with serious emotional disorders may have to relinquish the custody of their child for the purposes of seeking and receiving mental health services not otherwise available or accessible to the family. Often parents attempt to resolve their children's mental health concerns without resorting to the child welfare agency, but face no other alternative when their efforts fail. Let me highlight a few programs and initiatives ongoing at the ACF and in collaboration with SAMHSA and other HHS agencies.

The title IV-E Federal Foster Care Maintenance Payments Program provides upward of $5 billion annually to States to assist with foster care maintenance for eligible children, thereby promoting State provision of proper care for children who need placement outside their homes, in a foster family home or an institution.

ACF has been clear with State child welfare agencies that Federal law does not require that a family give up custody of their child to secure Federal funds for that child's placement in foster care. ACF issued guidance in 1982 that clarified that States need only have "placement and care responsibility" for a child for the purposes of Federal foster care. Moreover, just last month, ACF issued additional guidance that "placement and care responsibility" does not necessarily mean that a parent has relinquished all custody. Despite these clarifications, some States have chosen to limit voluntary placements into foster care to situations in which a parent specifically relinquishes custody. As we know, all too often, that is done simply to help their child get the mental health treatment and services that he or she needs and cannot get at home.

Once a child is in foster care, however, there is no guarantee that his or her mental health needs will be met. Results from ACF's Child and Family Services Reviews that evaluate the strengths and gaps in State child welfare systems, confirm that children and families face obstacles to appropriate mental health care. In particular, many States need to improve their assessments of families, since caseworkers frequently do not identify the mental health needs of children when case plans are being developed and services are being provided. State child welfare agencies often face the same challenges obtaining mental health services that lead parents to place their children in foster care in the first place. Children and families involved in child welfare face long waiting lists for mental health services; distance to service providers poses another difficulty.

ACF has found a Systems of Care approach offers an effective way to better serve children and youth with high-end mental health needs. ACF has just released a funding announcement for a Systems of Care initiative designed to help build a strong infrastructure of multi-agency collaboration, individualized care practices, culturally competent services and supports, and, critically, child and family involvement in all aspects of the system including assessing its accountability and effectiveness. It is an approach that has been spearheaded by SAMHSA and one I will discuss in greater depth in a moment.

States also can use funds from the ACF Promoting Safe and Stable Families Program to fund mental health and other supportive services for children with serious mental disturbances, so foster care does not need to be an option for families in the first place. That program provides States with flexible funding for a number of services, including family preservation and support. Another innovative child welfare-related change is proposed in the President's FY 2004 budget. The President's proposal would allow States to use Federal foster care funds to develop innovative approaches to prevent foster care placements and to develop services that meet the needs of children and families in the State enabling States to provide mental health services to families earlier, without ever removing children from the family or the community.

Let me turn now to SAMHSA.

Substance Abuse and Mental Health Services Administration

Some of the strongest child and family programs that SAMHSA currently administers promote stable families, improve outcomes for children with serious emotional disturbances, and reduce placements of children outside their homes and communities. The focus of these programs is consistent with the President's New Freedom Initiative by placing an emphasis on community-based systems of care in lieu of institutional care or other forms of child out-placement.

For the past ten years, SAMHSA has administered the most vigorous program in the Nation to address the needs of children with serious emotional disturbance and their families. The Comprehensive Community Mental Health Services Program for Children and Their Families has successfully reduced the need for parents to relinquish custody of their children in order to receive mental health services.

It has done so by requiring that funded communities develop systems of care that are child-centered, family-focused, community-based, and culturally competent. The program also requires that services be coordinated among the major child-serving systems including child welfare, juvenile justice and education. ACF has helped support the program and has worked with SAMHSA to that end. Further, both the Department of Education's Office of Special Education and Rehabilitative Services and the Justice Department's Office of Juvenile Justice and Delinquency Prevention have each provided a senior technical assistance advisor to program grantees. The goal is to create a positive, integrated, and seamless experience in service delivery for children with serious emotional disturbances and their families.

The need for this broad embrace of services is simple. Families are not the only people concerned about children with serious emotional disturbances. About 15 percent of children with serious emotional disturbances referred into systems of care come from family courts and correctional facilities, another 13 percent come from child welfare agencies, and another 18 percent from schools.

The removal of American Indian and Alaska Native children and youth with serious emotional disturbance from their homes and their communities, and the placement of these children in juvenile justice and out-of-State residential facilities is a particularly acute problem, due in part to the lack of resources to develop tribal systems of care. The SAMHSA-sponsored Circles of Care program has now funded approximately 16 Tribes and tribal organizations that have developed and implemented culturally sensitive strategies to keep children in their homes and communities.

The value of the systems of care approach cannot be overstated. Outcomes from the national evaluation of this SAMHSA program indicate that families feel supported by the services and, critically, that children improve in their functioning at home, school and the community. The Children's Services Program has now served over 60,000 children in 46 States, 10 American Indian and Alaska Native tribes, the District of Columbia, and the territories of Guam and Puerto Rico. Moreover, with an increasing State match over the tenure of each grant, virtually all of the graduated grant programs have remained in operation beyond their Federal funding lives.

The system-of-care approach has another benefit as well. A large proportion of the program grants have been funded through State departments of mental health, enabling States to implement multiple models for statewide implementation of community-based systems of care such as regional models, rural and frontier models, county models and city models. Another mechanism promoted by the program that States have used to coordinate implementation of home and community-based policies is a children's cabinet, typically composed of the State commissioners of child welfare, juvenile justice, education, health and mental health. At the community level, program coordination is driven by a team created to implement the individualized care plan for each child served. The goal is to identify the best possible set of services, interventions and supports available in the community to help children recover from their mental health problems, many of which are co-occurring with substance abuse problems.

SAMHSA also has provided grants over the past six years to develop Statewide Family Network organizations across most of the 50 States and the District of Columbia. These organizations enable families of children with serious emotional disturbance to participate in the development of policies that result in effective services for children with serious emotional disturbance. Families in these Networks also support each other so that children can be cared for in their homes and not have to be placed in more restrictive settings. Statewide Family Networks have now been implemented in almost all of the 50 States and the District of Columbia.

The issue of custody relinquishment does not only affect families of children, it also affects the families of young adults with serious emotional disturbance who are transitioning into adulthood. SAMHSA's recently funded Partnerships for Youth in Transition program is now providing youth, ages 14 to 21, with individualized services and supports needed to make the transition to jobs, educational opportunities, and successful community living which will reduce significantly the possibility that parents of the younger youth must relinquish custody.

SAMHSA also has taken the lead in cross-agency and cross-Department coordination of programs focused on children with serious emotional disturbances and their families. It annually convenes the Federal-National Partnership on Children's Mental Health, a group of Federal agencies and national organizations including ACF and CMS that plan innovative technical assistance activities for States and communities best accomplished through coordinated efforts. The Departments of Education and Justice also are well represented during the meetings of this partnership.

Let me turn, finally, to the HHS's Centers for Medicare and Medicaid Services.

Centers for Medicare and Medicaid Services

The Centers for Medicare & Medicaid Services (CMS) oversees the Medicaid program a jointly funded State-Federal entitlement program that serves more than 40 million low-income beneficiaries. Operating as a State-administered program that functions within Federal guidelines, Medicaid provides eligible children with serious emotional disturbances with both institutional and community-based services.

While there are many pathways for Medicaid eligibility for children, I will briefly describe how children with SED whose family incomes or assets make it difficult for them to meet the eligibility rules for Medicaid are able to get Medicaid services.

  1. A State may use what is referred to as the TEFRA optional eligibility category to provide Medicaid coverage to chronically disabled children who require an institutional level of care. Under this option the parent's income and assets are not considered when determining eligibility under this group. While the TEFRA option is a useful tool, fewer than 20 States have elected this option. In addition, many children with serious emotional disturbances do not meet the criteria for an institutional level of care.
  2. A State may not consider the parent's income and assets when determining Medicaid eligibility for a child residing in an institution. It is this part of the law that led years ago to the creation of the TEFRA option just described so that a child who either 1) becomes eligible for Medicaid may continue to remain eligible once he or she leaves an institution, or 2) a child who would require an institutional level of care, but had never been institutionalized to receive care in the community. AND
  3. States may cover children needing home and community-based services if the child would otherwise need institutional care covered by Medicaid. With a Home and Community-Based Services (HCBS) waiver, States can waive certain income and resource rules to provide Medicaid to persons (such as children with SED) who would otherwise be eligible only in an institutional setting.

CMS has granted HCBS waivers specifically for children with serious emotional disturbances in three States: Kansas, New York and Vermont. Children and their families in these waiver States may receive specific treatment and supportive services, among them respite care, case management, crisis intervention, and family support services. The law only permits HCBS waiver programs as an alternative to care in a hospital, nursing facility or intermediate care facility for the mentally retarded and not as an alternative to care in a psychiatric residential treatment facility. In most States, long-term care is provided to children with SED in psychiatric residential treatment facilities that are not hospitals. However, to repeat, the law does not recognize psychiatric residential treatment facilities as an institution. For those States that do provide services to children with SED in hospitals, the stay is usually of very short duration. Thus, it is difficult for a State to demonstrate cost neutrality of long-term community-based services in the community compared to short-term hospital stays.

Because removing this barrier would help this vulnerable population of children remain in treatment in their communities and with their families, President Bush included a demonstration grant proposal in his FY 2004 budget to provide home and community-based services for children currently residing in psychiatric residential treatment facilities.

In addition, CMS is working to make States aware of their options to help children with serious emotional disturbances, allocating approximately $525,000 to $1.4 million of the Real Choice Systems Change Grants for Community Living funds, a significant New Freedom Initiative, for grants to help States develop a comprehensive community-based mental health service delivery system through Medicaid for children with SED who would otherwise require care in a residential treatment facility.

Finally, for children already eligible for Medicaid, or those who become eligible under one of the Medicaid options discussed previously, the EPSDT program, or Early Periodic Screening, Diagnostic and Treatment Services requires that a child receive any necessary health care and treatment listed at section 1905(a) of the Social Security Act to correct or improve physical and mental illness and conditions discovered by the mandatory screening service. This is true even if the services needed are not covered under the State's Medicaid program. Thus, a child with a serious emotional disturbance may receive any and all necessary mental health services and may even be determined to have a mental illness through the EPSDT mandatory benefit within the Medicaid program.

CONCLUSION

While the GAO report has focused on what has not been done, I have tried to focus these remarks on what the Department already is doing and will continue to do to help end the need for parents to relinquish custody of their children to State juvenile justice and child welfare systems in hope of getting treatment for their children's serious emotional disturbances.

However, as in any public health effort, the Federal government does not and cannot act alone. States must develop better capacity to organize themselves and respond in a similarly coordinated manner, with designated leadership for the effort. Local communities, families, mental health professionals, supportive services providers, and other key groups must be part of the solution, as well.

What is clear to us all is that the solution involves real system change. As the President's New Freedom Commission on Mental Health pointed out in its interim report that the mental health service delivery system is fragmented leaving serious gaps in care for those with serious mental illnesses especially children.

Today, the parents of children with juvenile diabetes, with cerebral palsy, with cystic fibrosis or other long-term chronic illnesses do not have to seek placement for their children in State child welfare or juvenile justice programs to ensure that their children get care and treatment. It is time to treat mental illness with the same urgency as other illnesses. Consistent with the President's New Freedom Initiative, it is time to provide children and adolescents with serious emotional disturbances the same dignity, and the same opportunity for lives lived as members of both their families and their communities.

Thank you for the opportunity to address this important issue. I would be pleased to respond to any questions you may have.

Last Revised: July 18, 2003