Olmstead planning is not reaching emotionally disturbed children: Parents forced to give them up
Olmstead planning is not reaching emotionally disturbed children: Parents forced to give them up
Although many states are working to comply with the U.S. Supreme Court’s ruling in the Olmstead case that a comprehensive state plan can be used to demonstrate state compliance with the Americans with Disabilities Act (ADA), a new report says that little effort has been made to include meaningful planning for children with serious emotional disturbances.
In addition to requirements in the ADA, System of Care principles and values enunciated in the 1980s describe an appropriate children’s mental health service system with services provided in the least-restrictive setting that meets the children’s needs. But for many children, the report says, the rights and principles exist only on paper, creating several problems:
- In many states, according to the Bazelon Center for Mental Health Law in Washington, DC, children remain stuck in emergency rooms, hospitals, and residential treatment facilities because intensive community-based services are unavailable or unaffordable.
- Too often, parents are forced to relinquish custody of their children to the child welfare system to be able to access mental health services.
- Parents are told to call police and have their children brought into the juvenile justice system as a way to obtain needed services.
Bazelon senior staff attorney Mary Giliberti tells State Health Watch there are a number of reasons why seriously disturbed children are not being included in state Olmstead planning. First, she says, other populations have been more active and vocal in the past and continue to demand more attention. It’s not that the other groups don’t need and deserve services, she says, but that advocates for emotionally disturbed children haven’t been as successful in calling attention to their needs.
Another problem is that it takes financial resources and energy to move children into community-based services. Some states use Medicaid waivers for adults, but residential treatment facilities for children aren’t covered by the waivers.
Since coverage would be lost, there’s no financial incentive to move young people out of residential treatment into community-based services. One potentially bright spot is that the Department of Health and Human Services has released a notice indicating there will be Olmstead demonstration projects that will extend waivers to children in residential treatment centers.
A third reason that services for these children have lagged, Ms. Giliberti says, is the stigma that exists against children with mental illness. "They’re seen as bad children with bad parents," she says.
Although Olmstead involved two mentally retarded adult women, Ms. Giliberti says in her report that the reasoning used to decide that case may be even more applicable to children.
"Needlessly segregating children contributes to the stigma and stereotype that they are bad children with bad parents who are not worthy of participating in their home communities. Placing children in institutions also cuts off their ability to participate in family outings, religious services, community activities, cultural enrichment, and educational opportunities," she writes. "Most important, needless confinement severely hampers family relationships, which are critical to mental health and development."
Barbara Huff, executive director of the Federation of Families for Children’s Mental Health in Alexandria, VA, tells State Health Watch it is advocating changes in current policy and decisions because "kids belong at home, in school, and out of trouble."
The family-run organization was started at 1989 and works in individual states and at the national level to provide technical assistance, training, and research and policy activities for children with mental health needs and their families.
Different mindset needed
Ms. Huff says that although her group was at the forefront of efforts to pass legislation for $90 million in system of care grants, they believe children won’t benefit until government officials are pushed into acting.
"It’s hard. They just decide not to do kids," she says. "Kids are very difficult and very expensive. And they cross many systems. But it’s much less expensive to keep a kid in the community rather than in a $1,000 per day inpatient placement."
Ms. Huff says that officials are "entrenched in the medical model (of treatment) that hasn’t worked. No one wants to think outside the box and consider a whole array of services. We need a different mindset on what’s valuable for kids."
If things are going to change, she says, it will be because family organizations have "forced their way in. Many of our members don’t think there is much potential for their advocacy to work. They don’t realize that this is how big changes are going to happen."
Even if they can get their children included in legislation, Ms. Huff says, it’s also necessary to worry about appropriations. "States are in pain financially," she says.
"This is a bad time to be pushing for planning under Olmstead. It’s hard to force state officials to act without having money available."
The first thing that is needed, according to Ms. Huff, is a law that says that the system has to serve emotionally disturbed children. But right now there isn’t a commitment even for that.
Lack of public support
"It’s really gloomy," she says. "There just is no commitment. There’s not as much evidence-based treatment for kids. And it’s not a popular disability. We don’t enjoy a lot of public support.
"I just don’t think we’ve moved very fast. We’re making some major efforts but are struggling for sustainability. The ideal would be state legislation to demonstrate different approaches," Ms. Huff concludes.
Ms. Giliberti says that the Olmstead planning process provides a unique opportunity to address the coverage gaps involving emotionally disturbed children.
"Using the System of Care principles that have been developed and widely accepted in the children’s mental health field and the Olmstead principles set forth by the federal government, stakeholders and states should create a plan for systemic change in children’s mental health," she explains.
Bernard Arons, MD, director of the Center for Mental Health Services, used the analogy of a surfer treading water in the ocean, waiting for the right wave to come along. "That wave is here," he said, "particularly for children’s mental health.
"The Olmstead planning process can and should be the wave carrying children with serious emotional disturbances to shore. It is a matter of human and civil rights," Mr. Arons says.
[Contact Ms. Giliberti at (202) 467-5730 and Ms. Huff at (703) 684-7710.]
A Formula for Your Evaluation
Washington, DC-based Bazelon Center for Mental Health Law senior staff attorney Mary Giliberti’s report says there are a number of questions state policy-makers and advocates should consider when evaluating the adequacy of their state Olmstead plans for children with severe emotional disturbances.
- Are youth with serious emotional disturbances, their families, and child advocates full participants in the Olmstead planning process?
- Does the state plan identify the number of children in needlessly segregated settings or at risk of entering those settings?
- Does the state plan describe an assessment process specifically designed for children and their families and for the purpose of ascertaining what is needed for the child to live in the community?
- Does the plan discuss treatment planning and offer children and families choices about services?
- Does the plan provide for transitions throughout childhood and between childhood and adulthood?
- Does the plan discuss development and funding of an adequate service array?
- Does the plan ensure that high-quality services will be available?
- Does the plan provide for quality improvement and data to track the outcomes that are important to children and families?
- Does the plan specifically address the challenges of multiagency involvement in children’s lives?
System of Care Values & Principles with Olmstead
Core Values
- The system of care should be child-centered and family-focused, with the needs of the child and family dictating the types and mix of service provided.
- The system of care should be community-based, with the focus of service as well as the management and decision-making responsibility resting at the community level.
- The system of care should be culturally competent, with agencies, programs, and services that are responsive to the cultural, racial, and ethnic differences of the populations they serve.
Guiding Principles
- Children with emotional disturbances should have access to a comprehensive array of services that address their physical, emotional, social, and educational needs.
- Children with emotional disturbances should receive individualized services in accordance with the unique needs and potential of each child and guided by an individualized service plan.
- Children with emotional disturbances should receive services within the least restrictive, most normative environment that is clinically appropriate.
- The families and surrogate families of children with emotional disturbances should be full participants in all aspects of the planning and delivery of services.
- Children with emotional disturbances should receive services that are integrated, with linkages between child-serving agencies and programs and mechanisms for planning, developing, and coordinating services.
- Children with emotional disturbances should be provided case management or similar mechanisms to ensure that multiple services are delivered in coordination and in a therapeutic manner and that the children can move through the system of services in accordance with their changing needs.
- Early identification and intervention for children with emotional disturbances should be promoted by the system of care in order to enhance the likelihood of positive outcomes.
- Children with emotional disturbances should be ensured smooth transitions to the adult service system as they reach maturity.
- The rights of children with emotional disturbances should be protected, and effective advocacy efforts for children and adolescents with emotional disturbances should be promoted.
- Children with emotional disturbances should receive services without regard to race, religion, national origin, sex, physical disability, or other characteristics, and services should be sensitive and responsive to cultural differences and special needs.
The System of Care principles were developed for the Child and Adolescent Service System Program now administered by the Center for Mental Health Services of the Substance Abuse and Mental Health Services Administration.
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