Diane M. Jacobstein, Ph.D.; Lesli S. Cattan, C.S.W.
Fragmented service delivery currently thwarts care for many children and adolescents with co-occurring developmental disabilities and mental health needs. There are unique challenges in serving this population, including specific developmental issues, categorical funding and policy barriers that prevail nationally. An informal scan of providers, administrators and families across the country suggests several common concerns that include inadequate identification, segregated services with glaring gaps, and the need for workforce development. Some communities, including New York's Westchester County, have developed creative and replicable interagency strategies that overcome structural and financial barriers, support families and address the need for cross-trained personnel.
One current challenge is inadequate identification of children with co-occurring disorders. Reliable data on numbers of children with co-occurring disorders is not available at present. We know that mental health problems affect about 20% of all young people. Approximately 10% of the total population of children and adolescents have serious emotional disturbance at any given time (U.S. Department of Health & Human Services, 1999). Among adults, 20-35 percent is often given as the frequency of individuals with mental retardation who also have diagnosable psychiatric disorders (Stark, 1989). The concern is that many children with identified mental health issues may have unidentified communication disorders, learning disabilities or spectrum disorders and that numerous children with developmental disabilities may have overlooked psychiatric disorders, including depression and anxiety.
Many of the same issues that affect identification of psychiatric disorders and mental health problems with adults with developmental disabilities also affect children. These include diagnostic overshadowing (Reiss, Levitan, & Szysko, 1982). Diagnostic overshadowing is commonly seen with children who have mental retardation, whose symptoms of sadness or anxiety may be attributed to the intellectual disability and overlooked. As with adults, symptoms may be non-specific, such that children may engage in head banging as a non-verbal means to communicate physical pain, distress about the loss of a favorite teacher or a classical psychiatric disorder. Establishing a baseline of behaviors becomes critical for children, as emotional distress may be noted solely through an exaggeration of pre-existing behavior (Sovner & Hurley, 1989).
The family system is also a critical factor in clearly identifying those children who have co-existing disorders. We cannot minimize the painful process that a family experiences as they grapple with a child's disability. Frequently as parents begin to acknowledge their child's disability, it becomes apparent that other issues are complicating the diagnostic picture. Accepting one serious diagnosis may be difficult enough that the prospect of acknowledging a second one may be less tolerable.
Negotiating Fragmented Systems
Even when children with co-existing disabilities have been identified, the child and parents are challenged with needing to understand different service delivery systems in their efforts to access the most effective services. Professionals are equally challenged by a systems-driven knowledge base about treatment interventions and resources that most frequently does not include information about another system. Essentially, co-existing disorders among children represent a tremendous challenge for systems that typically do not intersect.
Programs for children are commonly segregated by age. For example, families with children below 36 months who have delays or disabilities relate to the Early Identification or Part C Office. Usually a different program is responsible for children between three and five years. A separate process may be initiated when a children then starts Kindergarten. At each step, different eligibility criteria and procedures are typically used. School systems are responsible for children with developmental disabilities until adulthood, so that many mental retardation offices traditionally exclude them, even if they are no longer in school.
Segregation by disability also appears to be the norm. Public programs for children with psychiatric disorders may bar those with concurrent mental retardation or autistic spectrum disorders, even if the parallel developmental disabilities system does not provide adequate mental health care. School systems commonly offer classes to children with dual disorders that address one disorder or the other. In order to obtain schooling for children who have serious emotional disturbance, for example, parents may be asked to forgo other special education that the child also requires. Behavioral treatment models for adolescents with serious emotional disturbance may be very inappropriate for those with primary social interaction impairments like Asperger disorder or intellectual disability. Substance abuse programs frequently decline to enroll adolescents with mental retardation.
The children's mental health systems and mental retardation/developmental disability services often do not relate at the state or local level. Each may have a different culture, language and funding source. Children in foster care have higher rates of chronic health, developmental and mental health problems than other children of the same socioeconomic backgrounds (American Academy of Pediatrics, 1994), but child welfare programs, too, may operate outside of these parallel developmental and mental health systems. Schools may not relate to either developmental disability or mental health services.
A common complaint in interviews with providers and parents across the country is that services tend to be driven by financing. A focus on dispute resolution appears to predominate in both systems where the central driving question is around eligibility issues, based on concerns about, "Who will pay?" As many children are covered on their parents' medical insurance, inequities in their provisions have an important impact on families' ability to access services for their children. Many insurance plans, for example, may disallow long-term care to maintain functioning, exclude habilitation for developmental disabilities, and severely limit mental health resources and access to providers with specialized skills. Low Medicaid reimbursement rates affect availability of providers in the public sector generally. Home and community waivers are reported to be very limited even in the communities that currently have access to them and staff for home services may be hard to find because of low wages.
Consequences of Gaps in Service
Although the array of programs varies from one community to the next, common themes emerge in discussions with families and providers. Services are reported to be especially limited for children and adolescents with severe behavior problems. Respite care and home supports are hard to find in many communities. Alternatives to residential placement, such as intensive behavioral treatment settings, are uncommon. The availability of substantial transition services is highly variable and often does not reach those dually diagnosed adolescents who leave school prior to the age of twenty-one. As indicated, there is reported to be a dearth of alcohol and drug abuse treatment for adolescents with dual (or triple) diagnoses. These limitations are layered on top of great disparities in access to health and mental health care among individuals of all ages with developmental disabilities, particularly those from minority communities (U.S. Department of Health & Human Services, 2002).
As a result of some of these gaps in available treatment, anecdotal information suggests that children with co-occurring developmental disabilities and mental health problems are over-represented in the juvenile justice system and at increased risk for out-of-home placement. The requirement of custody relinquishment to obtain public services has been well documented among children with serious emotional disturbance (Bazelon Center, 1999). There is concern that this may especially affect children with co-occurring disorders.
Need for Cross-Training
Effective services to children require a developmental perspective, along with the ability to listen closely and assess the needs of the children, their parents and other caregivers. The ability to design positive behavioral supports is required to avoid aversive controls or overmedication. Within the mental health and developmental disabilities communities few clinicians have the specialized diagnostic and treatment skills needed to address the challenges of working with children with co-existing disabilities. Some professionals may sense they do not have a clear diagnostic picture and will refer elsewhere for a more comprehensive evaluation. Even after a more complete evaluation, there is the challenge of on-going work with the child and family. Many providers-clinicians, case managers, respite workers etc.-feel unprepared to address the needs of their clients. Few clinicians have been trained in providing culturally competent community-based services within the interagency collaborations that are required. A cross-systems training curriculum is needed to make inroads into understanding the similarities and differences in the approach to children with both mental health problems and developmental disabilities.
Increasingly over the past 20 years, research on adults with dual diagnoses (Menalascino & Fletcher, 1989) has made significant inroads in understanding the complexities of assessment and improving treatment of those with co-existing disorders. In New York, two voluntary, not-for-profit agencies, Westchester Jewish Community Services (WJCS) and Westchester Association for Retarded Citizens (WARC), and the local branch of the New York State Office of Mental Retardation/Developmental Disabilities (OMR/DD) have each established clinic sites offering a variety of services to persons with developmental disabilities and dual diagnoses. Historically, most services were offered to persons over twenty-one years of age. Erroneously, it was assumed that children with developmental and psychiatric disabilities were receiving necessary services through the school system.
Westchester County's Department of Community Mental Health (DCMH), Children's Mental Health Program has spearheaded a countywide effort to begin to bridge the gap between mental health and developmental disabilities service systems specifically for children. After receiving a significant grant through the United States Department of Health and Human Services-Substance Abuse and Mental Health Services Administration (SAMHSA), Westchester's Children's Mental Health program established an innovative strength-based System of Care (Stroul & Friedman, 1994) to work with families whose children require a coordinated treatment plan from a variety of agencies. Children of any age and with any diagnosis were welcomed. Through the experience of ten local Network Teams and frustrated service providers, it was determined that approximately 20% of those children identified in the system as seriously emotionally disturbed (SED), were also developmentally delayed (Alfreds, 2002). It was becoming increasingly clear that the school settings were not sufficiently able to provide the range of services needed for these children. Referrals to the OMR/DD system were made with varying results, as the developmental disabilities providers were unprepared to work with dually diagnosed children. However, as the systems were willing to recognize the frequency of co-existing disorders among its most vulnerable populations, a collaboration developed. A Cross-Systems Advisory Group composed of providers of clinical, case management, family support, recreational, respite, social services, and therapeutic and foster care services came together to identify the particular challenges within the system and to address them.
The Cross-Systems Advisory Group quickly acknowledged that while its members were interested in the health and well being of the persons each served, significant challenges and differences between the systems existed. The most significant differences included:
"Core value differences
"Differences in method of access to system services
"Models of family supports services implemented
"Staff/client ratio expectations
"Driven at different levels of control (state vs. local)
Once these differences were identified, the Advisory Group spent almost a year working towards understanding the two systems' values, language employed, and method of accessing care. They recognized that intensity of service varied significantly, particularly in the area of case management/service coordination. As the cross-systems members became more familiar with each other's work, case examples were brought to this forum in efforts to address specific system's challenges. Ultimately the group was able to advocate for one young woman who was registered in both systems, accessing intensive case management services within the Children's Mental Health System while obtaining residential habilitation services through the OMR/DD Home and Community Based Waiver program. State approval was required to allow the greatly intensified case management from the mental health system to be substituted for the DD service coordination required as part of waiver services.
One of the most challenging aspects of the group's findings is recognizing the differences in level of control between the two systems. The Children's Mental Health System is driven at a local level, and as a result is more fluid in its approach to meeting the unique challenges of each child. The OMR/DD system is driven by state initiatives and direction. While the OMR/DD system may be less fluid it is more heavily funded to provide very specific programs. The state driven level of control within the OMR/DD system has also significantly impacted the model of family support services offered. The model within the DD community is focused on providing children and adults with programming options, particularly respite and recreation as a means to offer supports to the families.
Within the mental health System of Care, there had been created a freestanding parent support organization/agency. Family Ties-a grassroots parent support organization established for those families whose children have serious emotional, social and behavioral difficulties-has been an integral part of the initial successes within Westchester County. In addition to offering parent support groups and parent skills training, the members have access to family recreational opportunities, advocacy efforts, respite, an adolescent group, member-to-member telephone support and educational opportunities. Family Ties staff and parent volunteers are core members of each of the ten standing local Network teams, have sat on the Cross-Systems Advisory group, and participate in local, county, and state level planning and policy groups. They have opened their doors to the families of children who are dually diagnosed.
During 2002 and 2003, the Advisory Group developed and facilitated a twelve-week, cross-systems training program aimed at staff from both systems. Its goal was to provide an in-depth orientation to the issues facing staff negotiating both systems. The program was offered by a group of local professionals; each with a particular area of expertise in working with dually diagnosed children and adolescents. Topics included:
"Guiding Principles Driving the System of Care:
"The ABCs of Mental Retardation/Developmental Disabilities and Children with Serious Emotional Disturbance (SED)
"The Family Experience
"Mental Health Aspects of Mental Retardation
"Behavioral Strategies in Working with DD/SED Children
"Educating the Dually Diagnosed Child
"Teaching Independent Living Skills and Transition to Adult Services
"Reaching DD/SED Teens through Social Networks/Activities
As a beginning, the cross training provided a wealth of knowledge that continues to evolve over time. An indirect but most useful outcome has been the development of professional collaborations across agencies. These have been cited as most useful in managing the quagmire of services and accessibility challenges. Additionally, the Advisory Group has established a cross-systems resource book for children, which was distributed to all participants in the training program. Future training ideas generated from the group include developing an on-going peer supervision group for more challenging cases, and/or accessing experts in the field via the resources of national organizations such as National Association for the Dually Diagnosed.
Recommendations for future efforts to mend the cracks in service delivery will follow from two more sources that are not available at the time of this writing. One is a national Roundtable on Children with Co-occurring Developmental Disabilities and Mental Health Needs. This meeting, sponsored by the federal Center for Mental Health Services, Child, Adolescent and Family Branch, will be hosted by the Georgetown National Technical Assistance Center for Children's Mental Health on August 20, 2003 in Washington, DC. This "think tank" will include a small group of leaders in developmental disabilities, children's mental health, special education, early childhood mental health, juvenile justice and child welfare, including parents. The purpose of this meeting is two-fold. Increased interest at the federal and state levels underscores need for a strategic plan to systematically address policy barriers to appropriate care and to creatively shape an action agenda together. The second purpose for the meeting is to help the Georgetown National TA Center design a public policy forum on this topic for the July 2004 Training Institutes in San Francisco, to inspire renewed commitment to helping this group of children and their families.
Additionally, the Georgetown National TA Center will be distributing two national surveys in Fall 2003, which will attempt to address the need for of detailed information about the current patchwork of services across the country. The first is a survey of state administrators of mental health and developmental disabilities, to better understand the coordination of services going on now on the state level, to identify barriers that the state administrators are encountering, and their thoughts on ways to make service delivery more effective. The similar survey will go to parents, clinicians, and advocates, including representatives in the early childhood, child welfare and juvenile justice communities. Both surveys will seek to identify exemplary state and local programs around the country. Ultimately, Westchester County's experience, as well as that of other exemplary systems with broad interagency collaboration, may provide a framework for replication of greatly improved service models.
Alfreds, M. (2002). Personal communication.
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Bazelon Center for Mental Health Law. (1999). Relinquishing custody: The tragic failure to meet children's mental health needs. Author.
Menolascino, F. & Fletcher, R. (Eds.). (1989). Mental retardation and mental illness. Lexington, MA: Lexington Books.
Reiss, S., Levitan, G. W., & Szysko, J. (1982). Emotional disturbance and mental retardation: Diagnostic overshadowing. American Journal of Mental Deficiency, 86, 567-574.
Sovner, R. & Hurley, A. N. (1989). Ten diagnostic principles for recognizing psychiatric disorders in mentally retarded persons. Psychiatric Aspects of Mental Retardation Reviews, 8, 9-14.
Stark, J. (1989). Forgotten: The other dually diagnosed. The Habilitative Mental Health Newsletter, 9 , 103-108.
Stroul, B. A. & Friedman, R. M. (1994). A System Of Care For Children And Youth With Severe Emotional Disturbances (Rev. Ed.). Washington, DC: Georgetown University Child Development Center, CASSP Technical Assistance Center.
U.S. Department of Health and Human Services. (1999). Mental health: A report of the Surgeon General. Rockville, MD: Author.
U.S. Department of Health and Human Services. (2002) Closing the gap: A national blueprint to improve the health of persons with mental retardation. Report of the Surgeon General's Conference on Health Disparities and Mental Retardation.
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