The Parents’ View

Notwithstanding logistical differences between the states’ service programs, the families in all six focus groups made remarkably similar comments. A pattern of serious problems emerged from their statements that their children lacked access to needed services.

• Systems were crisis-oriented and furnished only minimal services once children were identified as needing help. This led to frequent—and, parents felt, unnecessary—deterioration and crises.
• Although parents had recognized their child’s mental illness at a very young age, they said that public agencies (mental health, schools, child care) routinely ignored their requests for help. This even occurred when there was information suggesting that a very young child needed mental health services, such as a record of birth to a drug- or alcohol-abusing mother.
• Even when children’s mental health needs were recognized, many families recounted long delays before they could obtain services.
• Families reported receiving little education about their child’s disorder and no training to assist them in managing their child at home (such as de-escalation techniques).
• Many parents said that their children had almost no access to intensive community rehabilitation services, such as home- based services, day treatment, school-based services, behavioral aides or mentors. Children in some localities had to be sent out of the area—some even out of the state—to obtain more intensive services.

Even when services were available, the parents noted, they were often ineffective because they were furnished infrequently or inappropriately or were provided by staff the parents believed to be unqualified.

• Parents found it particularly difficult for their children to get appointments with a psychiatrist. Too few child psychiatrists are available, they said, and even fewer accept Medicaid.
• Case managers, parents stated, if available at all, were inexperienced, poorly trained and burdened with such high caseloads that they could not help the families.
• Therapy was provided infrequently, many parents reported, citing intervals of up to two months between sessions. While this approach increases the number of children who receive some mental health services through the public system, such infrequent sessions do little to help children with serious disorders.7

Individualized service plans are a hallmark of good care for children with serious mental disorders, but many parents in both states reported that services were rarely tailored to meet their child’s needs.

• Despite diverse service elements, both states’ Medicaid programs placed a heavy emphasis on medications and limited therapy sessions, even though many families said that what they needed was access to more intensive services—in-home services, day treatment or other supports for their child, in combination with medication and therapy.
• Parents of adolescents reported that age-appropriate services for their teenagers, such as life-skills training to enable them to transition to adult roles, were rarely available.
• Many parents said they encountered crisis systems built around general medical emergency rooms or other patched-together responses. Mental health mobile crisis units were rare.

Families also reported serious problems in obtaining 24-hour care when, for lack of necessary community services, their children deteriorated to the point of requiring residential services. They said their children would end up on long waiting lists for scarce residential services. Once a child was in residential care, parents in New York reported, discharge planning was particularly poor and the children generally returned home with no plan in place for receiving services in the community.

Parents in both states found schools failing to respond appropriately to their children’s needs, despite the mandate of the Individuals with Disabilities Education Act’s (IDEA) that children with “emotional disturbance” be provided special education and related services. According to parents, many schools lacked school-based mental health services and some had no specialized day programs for children with mental illnesses. Some parents complained that schools, by failing to identify children’s mental disorders, denied their children an opportunity to access what services were available.

Particularly in Oregon, parents who could not obtain services for their child said they were often advised to seek services through the child welfare system. Oregon has a law that allows for parents to enter this system voluntarily, but even so some of these parents said they were told they would have to give up custody of their child if they wanted to access public mental health services.

In both states, some parents reported being told they could only obtain needed services through the juvenile justice system and being advised to call the police.

The parents’ observations reflect the disintegration the Bazelon Center has seen in all states’ mental health systems.8 Their reports paint a picture inconsistent with the comprehensive list of services in the states’ Medicaid plans. In both states, the multiple problems they cited illustrate key failings in public mental health for children.

• Public systems respond too late with too few services to meet children’s needs and the services provided are sometimes inappropriate.
• What services are provided fail to prevent deterioration in the child’s condition, resulting in behavior so extreme that children eventually come to the attention of the juvenile justice authorities or creating a situation so desperate that the family is driven to call the police.
• Cost-shifting between mental health, education, juvenile justice and child welfare agencies creates an unresponsive system where children fall through the cracks or are served in inappropriate venues.

Several families reported that mental health providers’ initial response to their child’s behavioral problems was to attribute the child’s behavior to poor parenting skills or to suspect some type of abuse. Even families with adopted children, who were likely to have behavioral problems related to their premature birth or maternal substance abuse, said they had been blamed. This is a familiar theme regarding mental health systems, contributing to the disenfranchisement that parents of children with mental health needs have long felt and their reluctance to seek help or to advocate aggressively when their child’s needs go unmet.

Without exception, the families expressed a strong desire to keep their children at home and to avoid any out-of-home placement, especially child welfare and juvenile justice placements. Many went to extraordinary lengths to adapt to their situation and take care of their child.

However, typically, as children grew older (and bigger), families said it was ever more difficult to cope with behaviors that were symptoms of the child’s illness. Many reported being on waiting lists for residential care—their child considered ill enough to need 24-hour professional care, but left with a family who received no special training, no respite and little if any support from public systems.

The impact on parents, siblings and others was often extreme, the parents said, yet they continued to do all they could to cope.

It gets to you after three or four days of the banging-of-the-head stuff, and the big fits and stuff, you get to where you’re stressed out and can’t cope either. And you start yelling and that shoots your kid right off the deep end. (Oregon)

Next: Implications for Public Policy