Portfolio at NYU

Posted 03.30.03
Custody Relinquishment

By Jasmin Chua

Motherhood was the last remaining connection Tracey had with her son. And now the Department of Social Services wanted to take that away from her.

Tracey's 10-year-old son, Dustin, was diagnosed at 5 with bipolar depression. At 9, he was interned at a psychiatric ward for slicing his wrist with a razor. Tracey knew her son needed help. She tried to get it from the Jefferson County Department of Social Services but found that help came with a caveat -- she had to relinquish custody of Dustin. When she refused, they accused her of being selfish.

"God forbid my son had cancer," Tracey said. "Would anyone ever, ever ask me to give up custody of my son so he could get medical help?" Surprising as it may seem, Tracey's story isn't an uncommon one. Elsewhere in New York State, parents of emotionally and behaviorally disturbed children are asked to make the same wrenching decision. They are families who have tumbled between the cracks of the income divide. Having exhausted private financial resources, including health insurance benefits, and yet ineligible for Medicaid, transferring custodianship of their son or daughter to state authorities appears to be their best and perhaps only shot at accessing public funds for mental health services and support.

Laura faced this problem when her insurance company stopped paying for Matthew's placement in a residential care facility five-and-a-half hours away from her home in Washington County. "I couldn't get approval from my insurance company," Laura said. "I applied left and right and I have a stack of denials that are an inch thick."
Since her husband made about $55,000 a year, they didn't qualify for Medicaid. According to 2002 stipulations from the New York State Department of Health, a family of three like Laura's cannot make more than $11,208 annually in order to be eligible for the state and federally funded program.

With the income of Laura's first husband (and Matthew's father) still counting towards his care, on paper, Matthew had nearly $80,000 available to him.

However, when you consider that residential care facilities cost up to $20,000 a month, the math gets a little fuzzier. "It's very expensive for these children," Laura said. "I don't think anybody, even families who make $150,000 a year can afford that much for a kid to stay some place. You don't have that." Like Tracey, Laura was told that the only solution was to give up custody of her son. This way, only Matthew's personal income -- essentially nothing -- would be taken into account, entitling him to the health coverage that Medicaid allows.

When Matthew, then 9 years old, attacked one of his teachers with a metal file, Laura's world was sent into a tailspin. Relinquishing custody was no longer an option. She could either give it up voluntarily or the county could wrest it away from her. "I was assured there was no way I was walking out of there with my son," Laura said.

"They" also told Laura that she was only giving up custody only in name; that she would always be Matthew's mother. After her son was taken away, every act of "mothering" was mediated by a social worker. Every minute detail of Matthew's life, from the facility he was placed in to the dentist he saw, was being handled by the state. "I couldn't even find out if he needed glasses," she said with visible frustration. "They wouldn't answer that question because I didn't have custody. They wouldn't tell me what medicines he was on; they wouldn't tell me what the dosages were. Nothing. They wouldn't tell me anything."

Someone later tipped her off about the New York State Office of Mental Health. Laura applied to their Home and Community-Based Waiver Service (HCBS) program, which waives parental income and qualifies the child for Medicaid. Not only did they start paying for Matthew's placement, Laura was also returned custody of her son, now 13.

The HCBS waiver program is also a major shift from hospitalization to treatment based in the community -- in a home-setting whenever possible. A fairly new initiative, New York is only one of three states in the country to which the waiver applies. Custody relinquishment is one of the things the waiver addresses, according to Roger Klingman, Director of Public Information at the New York State Office of Mental Health. "We're one of the few states in which there is an alternative available for parents who find themselves in that predicament," he said.

Today, Laura wonders why she wasn't told about OMH earlier. "I have been trying to get him placement since he was 5," she said. "All these years I've been banging my head against the wall. I was going round and round. I wish someone had just said: 'Why not try OMH?'"

She blames the lack of communication between the child welfare agencies. There is no comprehensive directory of children's services, for instance. "When you call an office you get bounced round to the same three services," Laura said. "You call one of them and they'll give you the other two and maybe one other. That's how you find out about these services. That and talking to other parents."

The disjointed children's mental health system is something that the Department of Mental Health in Albany County is trying to mend. "Our family courts have developed a form in which our most difficult cases tend to default," said its director, Robin Segal. "We need to see where services aren't working well and in particular, aren't working well across systems."

It was during her early days working as a psychologist in the children's services unit of the department that Segal became startlingly aware of the issues facing children, their need for services, and the difficulty in getting access to them.. For the last five years, Segal and company have been working to weld together one consolidated department for children's services, instead of having the services distributed over five different departments. "I've seen times when there are 25 different service providers involved, unknown to one another," Segal said. "I saw a tremendous waste that was really serving to impede our families and children, not help them."

The Department of Mental Health and Department of Social Services are only two slices of each county's pie, but they are usually the first pieces most people take a bite of. OMH has what are known as Residential Treatment Facilities, or RTFs, while DSS funds doppelganger versions of them known as Residential Treatment Centers, or RTCs. Identical in almost every way except perhaps for the last letter in the acronyms, their key difference is that custody relinquishment isn't a pre-requisite for placement in the RTFs. RTCs also happen to be more available than RTFs.

While custody is seized only if DSS finds the mother or father guilty of neglect or abuse, the lack of mental health services means that the situation could deteriorate in the household. Child Protective Services may even jump into the fray. Once that happens, even voluntary placement is out of the question. It now becomes absolutely necessary for custody of the child to be transferred to DSS. "The inability to take care of a child begins to look like an absence of capacity to parent on the part of the mother," she said. "What happens is that eventually, the family winds up being declared or declaring themselves as abusive or neglectful, in order to have DSS then take custody; in order for them to get the services that they need."

When the other agencies step up to bat, it starts to get a little crowded. In no particular order, the line-up includes the Department of Education, the Department of Mental Retardation and Developmental Disabilities, the Department of Juvenile Justice, and the rest of the Department of Health. These agencies, or "silos of care" as Segal called them, are also conduits to placement outside the home and attainment of services. The majority of children and families find themselves between the silos or in several silos. "The best way to understand how all this works is from a bird's eye view of how the different systems interact," Segal said. "[Only then can we] see what happens to children and families caught squarely in the midst of it."

A couple of the departments, including DSS, have already hooked up. By getting all the different agencies together at the table, however, Albany County hopes to find a common ground to work with. At the core of the new children's services department will be a comprehensive assessment of the family's needs to find out how to best streamline the process of serving them. The biggest impact of this initiative, Segal said, is that they are finally talking to one another and figuring out how the systemic interactions work. "Fifteen years ago it was every system for itself," Segal said. "The job [then] was to fight off and make sure you weren't taken advantage of by some other services system." To be put in the position of making people lose custody, Segal said, is an aberration of a faulty service system.

While similar efforts have been made on a state level, such as the Coordinated Children's Service Initiative, parent-advocates argue that the condition of children's mental health in New York still leaves much to be desired. Even with the Home and Community-Based Service Waiver program, there are a limited number of slots per county -- 600 for the whole of New York.

Families Together in New York State, a parent-run advocacy group, estimates that there are half-a-million children and adolescents who are in need of some kind of mental health service. Only 1 in 5 children were receiving services, according to a report released in 2001 by the Surgeon-General's Office. Using that formula, Families Together estimates that almost 400,000 children are left without appropriate mental health services. "Some of the rural counties only have one [waiver slot]," said Ruth Foster, Director of Public Policy at Families Together. "What do you do if you have two kids with a problem?"
Officially, there is no waiting list. "We've met families who tell us that they've been on the waiting list for six months," Foster said. "They're just waiting." The waiver program isn't for every child, said Mike Zuber of the Child and Family Services Bureau. "Some kids don't need that level of intervention," he said. "Sometimes what they need is a lower level of intervention and some of those programs are available either through school or though paid programs the county offers." Still he admits that there are limited resources.

Robin Segal concurred. "We're vastly underserved," she said. "As the Surgeon-General said, it's a service system at a crisis level."