Revolving Door of Care Children with mental illness bounce from foster care to hospitals.
Fifteen-year-old James, a boy who was abused as a child and who has symptoms of schizophrenia and psychosis, has been hospitalized for psychiatric issues nine times in the past eight years. James (not his real name) picks fights regularly with other boys at MercyFirst, the residential treatment center for foster children where he lives on Long Island. He has propositioned others on campus for sex, pulled his pants down in public, and once tried to sexually violate a resident in another foster care program, says Cathy Menzies, senior vice president of MercyFirst Campus Programs in Syosset. When the group moves to a new location, James often refuses to budge. And he does things that baffle and frustrate everyone, like insisting on wearing a winter coat and hat in 90 degree weather. Once he ran into traffic. Even though James is housed in MercyFirst's specialized program for young sex offenders, he needs more supervision and intensive psychiatric care than the residential center can provide, Menzies says. But a hospital will only take him when there is a crisis, if he is an imminent danger to himself or others. Menzies tried to get him admitted to an inpatient psychiatric facility designed for children who are not in crisis, called a residential treatment facility (RTF), licensed and funded by the New York State Office of Mental Health. He was rejected, she was told, because he needed a higher level of care than the RTF could provide.
The irony is not lost on Menzies: James is too ill for a Medicaid-funded RTF, but not ill enough for a hospital. The only system designed to look after children with serious mental illness, she says, claims it can't help him.
James' story is far from an anomaly. MercyFirst attempted to move seven of its residents to an inpatient RTF over the last year, but only two were approved. New York City foster care agencies referred 148 children with serious mental or emotional problems for inpatient RTF placement from September 2007 to September 2008. Only 80 were approved. Foster care agency executives say children are typically rejected either because they are too aggressive and disturbed, or because they are deemed stable enough not to need the round-the-clock psychiatric care an RTF provides.
"Either kids are seen as being not disturbed enough or not stable enough," says one foster care agency manager who wanted to remain anonymous for fear that speaking publicly would jeopardize her relationship with the state Office of Mental Health. "That slot in between where you can get a kid in it has gotten much, much narrower."
Foster care agencies say children with severe mental illness frequently bounce between residential treatment centers, which are the most intensive form of group-based foster care, and psychiatric hospitals. The hospitals return children to the residential centers as soon as their most serious symptoms subside. Back in foster care programs with only limited psychiatric services, their conditions typically deteriorate until they are ill enough to be admitted to a hospital again, say foster care executives.
"Child welfare has become the default system for kids with intense mental health needs," says Jeremy Kohomban, president and CEO of Children's Village in Dobbs Ferry, NY, which provides foster care and other services. "To constantly default children with significant mental health needs back to us creates a situation that is completely unwinnable for us, because foster care is not designed for longer mental health care."
The state Office of Children and Family Services (OCFS), which oversees foster care systems statewide, agrees there is a problem. "If a child's condition is more severe than what the child welfare system can handle but not severe enough for a (psychiatric) hospital to maintain a child, the child is stuck," says Mimi Weber, director of OCFS's Bridges to Health program, which offers non-traditional, community-based outpatient mental health services to a few hundred foster children in New York City.
Foster care agencies say the state-licensed RTFs are the logical place for these children because they provide more supervision and more intensive psychiatric services. But the organizations that operate RTFs say state law is clear: violent children or children who are likely to harm themselves or others cannot be admitted. The state Office of Mental Health (OMH), for its part, opposes long-term institutional care for children, and by law, the committee that rejects and approves applications for RTFs must consider placing children in less restrictive settings before settling on inpatient psychiatric programs.
"Every community has a range of alternatives to institutional care," says OMH spokeswoman Jill Daniels. Applications for New York City youngsters to be placed in an RTF must be approved by a panel made up of a child psychiatrist and representatives from OMH, the city Department of Education, and the Administration for Children's Services.
New York State has expanded community-based mental health services in recent years, in the hopes that children will receive treatment before their conditions deteriorate to the point where they need institutional care. Federal regulations permit states to use Medicaid funds to pay for intensive, ongoing outpatient services, not just hospital care, under a program called the Home and Community-Based Services waiver. In New York City alone, the mental health residential support services component of this program has grown from 64 slots for young people in 1996 to 510 slots in 2007. Statewide, the program has grown from 125 slots in 1996 to 1,506 slots in 2007, according to OMH.
In addition, Bridges to Health provides support services to 310 children statewide in foster families under the Medicaid waiver. That number was expected to nearly double to 610 by March 31, 2009, Weber said. But these programs work with children living in foster families, and can't help those in residential institutions. Some foster care agencies say the state should create more RTF beds and change the statute to permit RTFs to admit violent children, sex offenders, and those with substance abuse problems.
Others say a better solution is to provide more intensive psychiatric care within the foster care residential centers, and increase the amount of money agencies receive to provide care for these children. Certainly a large part of this dispute is about funding. Statewide, about 3,400 children are housed in foster care residential centers, which, like MercyFirst's, are designed for foster children who have emotional or behavioral problems. These centers typically look a little like boarding schools, with children living in supervised cottages and attending school on the center's campus or nearby. The centers receive most of their funding through the foster care system, based on a per-child, per-day rate that averages about $212.
Children with more severe mental health problems may be assigned to residential treatment facilities (RTFs), which are fully funded by Medicaid at a much higher rate, about $455 per day. The average length of stay there is 14 months. These inpatient facilities are designed for children ages 8 to 18 who are well enough to leave a hospital but not well enough to go home. They typically have 14 beds, a nursing station and much closer supervision than the foster care residential treatment centers. Some organizations, including MercyFirst, have both types of programs on their campuses, but they can't move children from one to the other without state approval.
New York City children have more competition gaining admission to the RTF beds than those from suburban or rural communities. Of the 539 RTF beds in New York State, only 125 are reserved for children from New York City. About 32 of those accept only younger children, and 61 are open only to teenagers who are dual-diagnosed with a mental illness and low IQ. That leaves just 32 available for teens with normal IQs. Another 137 beds, located in the suburbs, are open to either city or suburban children.
Foster care agencies complain that the rigidity with which beds are assigned to city or suburban children means some beds remain empty even when demand is high. Madonna Heights Services in Dix Hills, Long Island, largely shelters kids who are not from the city, but it has had two of its 14 beds sit empty for about a month, says Adria Filmore, RTF program director. The program is run by SCO Family of Services, which is also one of the largest providers of foster care services in New York City. Nearby in Syosset, MercyFirst's RTF has had three beds sitting empty for over a month, says Menzies. She adds that she desperately wants to fill those beds with teens housed in her foster care residential center, but the beds are not earmarked for New York City children.
The problem of revolving-door care for children and teens with serious psychiatric problems is not new. In 1999, the Legal Aid Society filed a class action lawsuit accusing New York State's mental health system of allowing hundreds of mentally ill children to languish in hospitals, juvenile jails and foster care placements instead of providing them a place in their programs. Back then, the state kept a waiting list of about 400 children who had been approved for OMH-run programs, but who had not yet found a slot. Some had waited for a year.
The lawsuit was settled in 2005 with an agreement that children placed on the waiting list would receive an RTF placement within 90 days of certification. While some advocates hoped this would mean OMH would open more beds for New York City children needing to live in RTFs, no new permanent beds opened.
Service providers say that instead, it became increasingly difficult to get children on the waiting list in the first place. "One way to not have a wait list is to provide services to anyone who needs them. Another way is to not approve anyone," says James Purcell, chief executive officer of the Council of Family and Child Caring Agencies, the umbrella organizations that represents foster care agencies. "They've simply reduced the visible waiting list by not approving the applications."
The Office of Mental Health maintains that no additional RTF beds are necessary. "OMH has been steadily developing a comprehensive array of services that moves away from institutional placement and instead allow children to remain at home while receiving levels of treatment formerly available only in RTF or hospital settings," says Daniels, the OMH spokeswoman.
The Administration for Children's Services in recent years has also moved away from institutional or congregate care in all but the most difficult cases. This means a higher concentration of the children in foster care residential treatment centers have mental health needs. "The kids we are getting are kids who need a lot more," says Kristin Boyle, director of social services at the foster care agency Green Chimneys in Brewster, NY, which has both a residential treatment center and an RTF.
"It stresses and strains every area of the program," adds Boyle. "It takes away from the kids. It takes staff. It's like a bucket with holes. You put your finger in but then water pokes up somewhere else. If you have 12 kids here who require you to take all of your resources from other places to put those on the 12 kids, how well are you serving the other 68 kids?"
Sixteen-year-old Shanell (not her real name), hospitalized 13 times for violent behavior and other psychiatric issues, assaulted staff and residents and tore apart the cottages at a residential treatment center operated by the Jewish Child Care Association (JCCA) in Pleasantville, NY. "She is going to need mental health services all her life, it's crystal clear," says Candace Tinagero, JCCA's senior vice president of foster care and residential services.
"We think an RTF would work for a girl like this because they're heavily staffed. With this girl, when she gets the attention and care she doesn't go off, she doesn't get crazy. Kids like this calm down considerably with more people around."
But the application to place Shanell in an RTF was rejected, Tinagero says. "Every kid we refer, they say is too disturbed or too acting out or too aggressive," she says. "It's unbelievable to me that the highest level of care in the system can't take the kids that we can't manage."
There is some evidence teens who live in the more secure RTFs are less likely to commit crimes after they are released. The August Aichhorn Center for Adolescent Residential Care, an RTF for 32 young people between the ages of 13 and 19, produced a study comparing the outcomes of young people admitted to Aichhorn with teens who met the criteria for admission but were rejected because beds were not available. The state Office of Court Administration reported that about 39 percent of Aichhorn's alumni were subsequently arrested, compared to 60 percent of the group that was not admitted, according to executive director Michael Pawel.
Meanwhile, social workers for foster care agencies say they are discouraged by the application process for RTFs. Missing paperwork or even a form filled out incorrectly can delay the process for months. Social workers say they put an enormous amount of time and energy into the applications, even if they know it is likely to be rejected.
Some foster care agency executives say that to keep up with the kids they're serving, they must reinvent themselves. They would like to create programs with much lower staff-to-child ratios and richer clinical services, but the funding for such programs simply doesn't exist. So for now, these agencies care for children with severe mentally illnesses as best they can, referring them for inpatient care when they feel they must, and struggling with the often complex admissions policies to the RTFs.
"Our workers are stretched thin," says Kohomban at Children's Village. "You keep getting these answers back and forth and some of these reasons [for rejecting kids] are so elaborate. You give up. You say screw it."