Office on Disability

Executive Summary

Across America, states and communities are challenged by the needs of children and adolescents with co-occurring developmental disabilities and emotional and/or substance abuse disorders. Because of the complexity of their needs, rarely can one system-the developmental disability system, the mental health system, the educational system, the juvenile justice system or the substance abuse system-provide the comprehensive services and supports these children and their families require. Inadequate screening and early identification mechanisms, differing eligibility criteria, long-term cultural differences between systems, and rigid federal funding streams fuel the situation. In those states and communities that are most successfully serving children with complex disorders, multiple systems are working together in a system of care1 to provide wraparound services and supports that address the comprehensive needs of the child and family.

To more fully understand the challenges faced by states and communities as they strive to fully integrate children with co-occurring developmental disabilities and emotional and/or substance abuse disorders,2 the U.S. Department of Health and Human Services Office on Disability in partnership with the Substance Abuse and Mental Health Services Administration (SAMHSA) convened "The Summit: State-Community Response to Barriers for Children with Co-occurring Developmental Disabilities and Emotional/Substance Abuse Disorders" on April 27, 2005. This was the third gathering of federal department leaders to consider the specific needs of this population.

Panel presentations by invited parents and state and county representatives highlighted many challenges to providing appropriate services for children and adolescents with co-occurring disorders. For example:

The panelists offered specific recommendations for what the federal government could do to better meet the needs of children with co-occurring disorders, their families, and the state and local systems that are serving them. These recommendations resulted in five major categories, which include:

Finally, participating federal departments suggested action steps they could take to address the challenges highlighted and recommendations presented. For example, the Social Security Administration will investigate further how SSI might be used to relieve some of the constraints imposed by Medicaid in serving children with co-occurring disorders; the Substance Abuse and Mental Health Services Administration will continue to provide training and technical assistance activities to improve screening and early diagnosis; the Administration on Children and Families will use the network of the Administration on Developmental Disabilities grantees to highlight the needs of young people in this target group; and the Health Resources and Services Administration will use the Federal Interagency Coordinating Council to raise issues related to these children and their needs. The full list of action steps is included in this document in Appendix D and will be revisited as the federal leaders continue to meet and discuss the particular issues of this population.

The appendix to this report includes several documents including the Summit agenda (Appendix A), a list of participants (Appendix B), the PowerPoint presentations used by panelists (Appendix C), a grid that summarizes the issues and recommendations as outlined by the panelists and the federal response (Appendix D) and supporting state/county financing data (Appendix E).

Section I

Purpose of the Summit

On April 27, 2005 the Department of Health and Human Services Office on Disability in partnership with the Substance Abuse and Mental Health Services Administration (SAMHSA) convened "The Summit: State-Community Response to Barriers for Children with Co-occurring Developmental Disabilities and Emotional/Substance Abuse Disorders." The purpose of the Summit was to understand the challenges faced by states and communities as they strive to fully integrate children (birth through age 21) who have a wide range of developmental disabilities and who also have emotional and/or substance abuse disorders of varying severity. This includes children with autism spectrum disorders and those with both intellectual disability and normal intelligence. In addition, the Department hoped to identify ways in which federal policy and programs can facilitate more child and family-centered, culturally competent services.

Participants included representatives from the relevant federal departments, and representatives from states and local communities who are finding creative and effective ways to address the needs of children with such disorders and their families. Family members were in attendance and offered testimony of the challenges they face in accessing appropriate services for their children. A full participant list is included in the Appendix B.

The Summit was designed with three panels of experts representing families, local programs, and progressive counties and states that are addressing the needs of children with co-occurring developmental disabilities and emotional/substance abuse disorders in a significant way. The panelists and facilitators for each of these sessions are listed in the Summit agenda, which is included in Appendix B.

Throughout the meeting, time was allotted for federal partners to reflect on the presentations and offer suggestions for what they could do within the confines of their legislative mandates and regulations to support an improved delivery system that would be child and family driven; focus on prevention, early intervention, treatment, and recovery; and that would be flexible and individualized to meet the unique and comprehensive needs of children facing these challenges.

The Summit was organized by Dr. Margaret Giannini, Director of the Office on Disability in the U.S. Department of Health and Human Services; Ms. Eileen Elias, Deputy Director of the Office on Disability; and, with support from the SAMHSA, Drs. Phyllis Magrab and Diane Jacobstein, from the Georgetown University National Technical Assistance Center for Children's Mental Health. Facilitation was provided by Dr. Giannini; Sybil Goldman, Senior Advisor on Children in the Substance Abuse and Mental Health Services Administration; Dr. Magrab; and Dr. Patricia Morrissey, Commissioner of the Administration on Developmental Disabilities in the U.S. Department of Health and Human Services.

The Summit built upon several earlier decisions, statements, and activities, all of which illustrate a commitment by the federal government to attend to the needs of more than 54 million Americans across the lifespan who are living with disabilities:

The April 27, 2005 Summit summarized in this White Paper, as well as the earlier decisions, statements and activities, demonstrate a commitment to enhancing opportunities for all people with disabilities, and in particular for America's children who are challenged by co-occurring developmental disabilities and emotional and/or substance abuse disorders.

Section II

Background on the Target Population and Policy Issues

The population of children with multiple diagnoses is increasingly recognized as a challenge to systems at the federal, state and local level. Children with developmental difficulties have an elevated vulnerability to behavioral health issues including depression and anxiety. A literature review published in 2005 by Prout found that 25-48% of children with developmental disabilities also have emotional disorders.3 Within very specific diagnostic groups, such as Fetal Alcohol Syndrome or Fragile X Syndrome for example, the percentage of children with behavioral and emotional disorders may be far greater.4 There is growing awareness that many children in the juvenile justice and child welfare systems have significant emotional needs and developmental disabilities as well.

Because of the traditional structure of services, the multiple and specific needs of these children are often not easily identified. For example, the need for mental health services may appear as the obvious issue requiring intervention, but the less clear yet equally important habilitative needs resulting from an intellectual disability or an autistic spectrum disorder may go unnoticed and unaddressed. In part, this is due to the complexity and intensity of the services often required, but it is also due to narrowly focused (or categorical) systems, eligibility, interventions, and funding streams that are not structured to take a holistic approach toward assessing and treating comprehensively. As a result, these children with multiple disorders may not have all of their needs met. Either they are served in one system that is able to address part of their problem, or they are the "unclaimed" children and youth who fall through the cracks and do not get the services that they require. The consequences of this neglect may prove to be pervasive and long-term for the child, the family and our society. Inappropriate hospitalization, out-of-state placements by schools, custody relinquishment to child welfare, and incarceration by juvenile justice can sometimes be avoided when children's needs are identified early and when service decisions are driven by treatment plans that are child and family centered, comprehensive, and culturally appropriate.

Two stories illustrate the challenges faced by children with such multiple needs and their families.

Section III

State/County Barriers and Lessons Learned

The Summit was organized into three panels, each of which addressed a specific objective and was grounded by presentations from the field. The main themes from each panel are presented below.

Panel One: Comprehensive and Coordinated Systems of Care

The objective of the first panel was to identify overall barriers and best practices to comprehensive systems of care for children with co-occurring developmental disabilities and emotional and/or substance abuse disorders. Included in this was discussion about coordination among state and community agencies, historic turf issues, and training. What follows are the main themes emerging from the presentations of the panelists and group discussions.

Panel Two: COMPREHENSIVE AND COORDINATED SYSTEMS OF CARE: ELIGIBILITY AND ACCESS BARRIERS

The objective of the second panel was to identify barriers and best practices related to eligibility and access to comprehensive services. Included in this was discussion about prevention, screening at entry to any system, eligibility requirements, coordinating eligibility across systems, IQ cut-off, autism spectrum disorders, custody relinquishment, child welfare, and juvenile justice. What follows are the main themes emerging from the presentations of the panelists and group discussions.

Panel Three: COMPREHENSIVE AND COORDINATED SYSTEMS OF CARE: ADDRESSING FINANCIAL CHALLENGES

The objective of the third panel was to identify an array of funding strategies that support comprehensive coordinated systems of care. Included in this was discussion about Medicaid waivers, block grants, funding strategies, and cost benefits. What follows are the main themes emerging from the presentations of the panelists and group discussions. (See Addendum E for information on state/county financial impact and other supporting data).

The barriers and lessons learned outlined above addressed the three specific objectives of the Summit. As discussion evolved, it became clear that there was significant crossover and repetition. For example, a conversation about eligibility and access naturally includes discussion about financing. Similarly, a conversation about multi-system collaboration includes discussion about turf, training, and financing. This overlap reinforces the importance of holistic reforms and systems change that is being realized in many states and counties across the country. Where comprehensive and coordinated systems of care have been developed, communities are better equipped to address the complex needs of children with these co-occurring disorders and their families. But as many panelists note, developing a system of care is not easy: it requires leadership; common values across systems; a willingness to abandon historic turf issues; an ability to engage in multi-system case planning rather than dispute resolution where systems argue that a child does not "fit" their criteria; flexibility with funding so that service delivery is driven by need, not by diagnosis or the convenience of funding streams; and the guarantee of services, not just a plan for the services that should be provided.

Section IV

State/County Policy Recommendations

The panelists offered specific recommendations for what the federal government could do to better meet the needs of children with co-occurring disorders, their families, and the state and local systems that are serving them. These recommendations cut across the objectives outlined for the Summit and resulted in five major categories of recommendations. The categories include:

Specific recommendations within each category will be outlined below.

MAKING SERVICES MORE ACCESSIBLE AND CHILD AND FAMILY CENTERED

INCREASING CAPACITY IN THE FIELD

FACILITATING INTERAGENCY COLLABORATION AND PARTNERSHIP AT THE LOCAL, STATE AND FEDERAL LEVEL

PROVIDING MORE FLEXIBILITY FOR FINANCING SERVICES BASED ON NEEDS

SUPPORTING TECHNOLOGY AND RESEARCH

Section V

Federal Response and Recommendations

In the final session of the Summit, Dr. Giannini asked the federal partners to reflect on the meeting's objectives, and the lessons learned and recommendations outlined by the panelists. She invited each federal agency to offer potential actions steps that they might take to help advance the discussion and to address the needs of children and adolescents with co-occurring developmental disabilities and emotional/substance abuse disorders.

Action steps offered by the federal departments and agencies are outlined below. Based on the general discussion, additional recommendations are added (and marked) for consideration by departments that agreed to move this effort forward and to identify specific plans in later discussions.

ALL DEPARTMENTS: actions to consider

DEPARTMENT OF EDUCATION: actions to consider

DEPARTMENT OF HEALTH AND HUMAN SERVICES

The Administration on Children and Families
The Administration on Children and Families will:

Centers for Disease Control: action to consider

Centers for Medicare/Medicaid Services
The Centers for Medicare/Medicaid Services will:

Additional action to consider:

Health Resources and Services Administration
The Maternal and Child Health Bureau will:

Additional action to consider:

Office on Disability
The Office on Disability will:

Substance Abuse and Mental Health Administration
The Substance Abuse and Mental Health Administration will:

Additional actions to consider:

DEPARTMENT OF HOUSING AND URBAN DEVELOPMENT: action to consider

DEPARTMENT OF JUSTICE: actions to consider

DEPARTMENT OF LABOR
The Office on Disability Employment Services of the Department of Labor will:

FEDERAL TRANSIT AUTHORITY/DEPARTMENT OF TRANSPORTATION

In response to the presidential Executive Order that requires eleven departments to work together to address transportation issues for people with disabilities, the Federal Transit Authority of the Department of Transportation will:

SOCIAL SECURITY ADMINISTRATION
The Social Security Administration (SSA) will:

Additional action to consider:

Section VI

Summit Conclusion

Prior to adjourning the Summit, the following summary of the meeting's accomplishments was made. The objectives of the meeting were met: participants actively discussed the population of children with co-occurring developmental disabilities and emotional/substance abuse disorders, eligibility and access barriers for these children, and challenges associated with financing systems of care. Parents presented rich testimony so that all present could understand the real barriers faced by families in attempting to access appropriate services for children in this target group. States and counties also provided a summary of the barriers they encounter, their lessons learned, and recommendations for what they believe the Federal government should do to better address the needs of these children and their families. And finally, there was a useful dialogue among Federal partners about the next steps each agency will take to address the challenges raised during this Summit. Dr. Giannini will be calling each federal principal to further identify how each entity's identified actions can be met.

The Appendices to this report include many useful materials, including descriptions of state and community efforts, financing strategies and cost benefit data.

Last Revised: May 22, 2006