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Second Annual Policy Makers' Summit: November 23, 2004

Challenges and Recommendations

The participants broke into small groups with a charge to develop two or three “Big Ideas” or strategies for overcoming the challenges to the evidence-based practices that were summarized earlier and for scaling up the use of evidence-based practices. The five areas of challenges to services were identified from surveys and focus groups of state and local stakeholders as:

•  Eligibility and Diagnosis Policies

•  Finance Policies

•  Lack of Collaboration

•  Lack of Effective Services

•  Knowledge, Skills and Beliefs

•  Addendum to Recommendations

The small groups identified the following strategies to overcome the challenges and scale up the use of effective, evidence-based practices for promoting social emotional development and prevent and address challenging behavior.

Strategies for Overcoming Challenges Related to Eligibility and Diagnosis

1. Develop Diagnostic System -Articulate and develop a “diagnostic system” that takes into account the unique needs of young children. The fact that children are “growing and developing” adds complexity to the issues of establishing eligibility and framing questions for diagnosis and assessment that the ICD and DSM taxonomies cannot address. New developments that should be considered in this regard are the DC-0-3 and WHO International Classification of Function – child version. These systems have promise for yielding information and coding that could drive a reimbursement structure.
2. Improve Assessment Process -Assessment services (screening, diagnosis, treatment) should be informed by the perspectives of multiple disciplines; physical, mental, allied health and also by those people, in addition to their parents, who are with them daily (i.e. teachers, childcare). The time costs for collection of adequate information across settings needs to be studied and fair reimbursement rates for their time costs need to be applied. Responsibilities for collecting information need to be clarified and assumptions about costs need to be tested against actual experience. The goal of assessment is reliable, coherent, culturally competent description of a child's strengths and needs to inform an individualized plan. To that end, all sources of information need to be synthesized and adequate time (time=money) needs to be allocated.
3. Increase Information Sharing -There needs to be ways to share information across all those involved in a child's life. Parents and “providers” need to be involved and have access to all of the information relevant to their child's health, development, well being.
4. Find Ways to Reduce Stigma- Research needs to be conducted on how to minimize the stigma that appears to be inherent in a “mental health” or “challenging behavior” diagnosis.

Strategies for Overcoming Challenges Related to Finance Policies

1. Improve Insurance Coverage -Create mental health parity in private and public insurance coverage for young children. Also integrate functions of Medicaid and SCHIP to elevate mental health services for young children to a level of higher importance comparable, for example, to immunizations.
2. Child as Point of Entry- Make available mental health treatment for young children based on child as point of entry for the family with treatment plans and definitions including other family members.
3. Utilize Resources- Map all funding sources with key stakeholders represented and, involve these stakeholders in figuring out how to use existing resources which includes private health insurance, Medicaid/SCHIP (with particular attention to Medicaid waivers) non-traditional players ( e.g., business) and Head Start and Child Care subsidy dollars.
4. Examine Legislation and Initiatives- Work with existing legislation to maximize benefits. For instance, figure out how to fund the new CAPTA amendments to support increased referrals to Part C and maximize EPSDT by enforcing provisions regarding early intervention and mental health. Also support initiatives and services that are not confined to individual child funded services only and/or place special emphasis on identifying promising practices at federal and state levels (the Early Childhood Comprehensive Systems (ECCS) Initiative, Maternal and Child Health Bureau/HRSA, currently underway is one example).

Strategies for Overcoming Challenges Related to Lack of Collaboration

1. ECE Community and Families- We need improved collaboration between the ECE community and the families of children with challenging behavior including key players such as early intervention, Mental Health, parents, and parent organizations. Rather than place blame or make families feel stigmatized, organizations need to create a support system for dealing with the challenging behaviors, effectively determining eligibility, and providing quality outreach services. It is imperative that this system takes into account the diversity (linguistically, economically and racially/ethnically) of their clients and makes everyone feel comfortable and welcome. Various professionals who work with families and provide services for children from birth through school age need adequate training in challenging behavior. Social emotional development must be normalized, and greater stress must be placed on a family wellness model.
2. Social Marketing - Positive messages like “Healthy Children Ready to Learn” will encourage families to access the support services available to them. The messages must be delivered by individuals who are trusted in their respective communities. Advice and collaboration from Madison Avenue firms as well as trusted messengers from within the community should be used. Resources are needed to support this goal.
3. Poverty -The role that poverty plays in regard to mental health and overall well-being must be recognized and, consequently, it is essential that we break down the barriers between the concepts of “physical” and “mental” health. Questions like “how does resilience differ in families that are poor?” need to be answered.

Strategies for Overcoming Challenges Related to Lack of Effective Services

1. Identify Existing Effective Programs- Figure out what is “out there” from the perspective of parents and professionals. Once this is determined, decide if these existing services are effective.
2. Disseminate and Scale-Up- Examine model programs and determine ways to make this information accessible to all communities and programs. Scale-up awareness of the “teaching triangle” r and other effective practices through dissemination of training. Make the message applicable to different audiences.
3. Transportability- We need to understand how evidence-based practices work in different types of communities.

Strategies for Overcoming Challenges Related to Knowledge, Skills and Beliefs

1. Disseminate knowledge - Send information about the importance and impact of challenging behavior in young children directly to key individuals and organizations (leaders, funders, policy-makers, legislators) in an effort to gain their support for systems development and ongoing research. Develop a national campaign of awareness that provides guidance on the effective/critical program and systems components needed to support children. Develop a national marketing campaign with a message broadcast in the media that links the importance of social-emotional development to school readiness including a national web site of all information related to promoting children's development. Find ways to encourage federal agencies to partner with national organizations and join the TA centers in an effort to scale up dissemination efforts to all disciplines. Use a common language (e.g., social-emotional vs. mental health or challenging behavior).
2. Provide Training - With a particular emphasis on “front-line” providers/clinicians, develop a technology-based training package with broad appeal (web, distance ed) to provide professional training/workforce development for all disciplines working with young children. Provide incentives to states to build a system of training and TA.
3. Develop Cadre of Trained Professionals - Create a new cadre of trained professionals who can guide ECE program personnel, social-emotional development specialists as well as reach out to medical societies to influence health care professionals. Create an informed parent network that can guide, teach, and support other families.

Addendum to Recommendations

The Social Security Administration has a set of criteria it uses to define various disabilities in children (and in adults). However, because the SSI program is actually administered by individual states, the process by which children are assessed and determined to be disabled varies by state. What it means is that children living in certain states are more likely to be found to be disabled (and thus to get SSI, Medicaid and/or other services) than those living in other states. I don’t know (and would be interested in hearing) what the argument is for the status quo, but I would recommend that the Social Security Administration be required to standardize its assessment process, in order to make it (1) clearer and easier for clinicians to perform evaluations and (2) fairer for children and families

Small group working on recommendations for changes to Finance Policies

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