National Policy Forum: Attention to Co-occurring Disorders in Health Care Reform

This article appeared in the January/February 2015 NADD Bulletin.

US Public Policy

National Policy Forum: Attention to Co-occurring Disorders in Health Care Reform

Diane Jacobstein, PhD, Georgetown National Technical Assistance Center for Children’s Mental Health, and Eileen Elias, MEd, JBS International Inc.

In October 2014, NADD sponsored a national policy forum for key stakeholders in North Bethesda, MD. Representatives included families, federal agencies, managed care organizations, disability associations, providers and advocates. The focus was on NADD’s position statement, Including Individuals with Intellectual/Developmental Disabilities and Co-Occurring Mental Illness: Challenges that Must Be Addressed in Health Care Reform ( NADD representatives began by describing the development and content of the document and NADD’s workforce initiatives. Participants then responded to the policy statement and initiated a strategic planning process designed to ensure that needs of individuals with co-occurring IDD and mental illness are addressed in our changing health care environment.
The keynote speaker was John O’Brien, Senior Policy Advisor, Disabled and Elderly Health Program Group, Center for Medicaid and CHIP Services Center for Medicare and Medicaid Services (CMS). At the outset, Mr. O’Brien stated, “The recommendations in the position paper resonate well with CMS and State Medicaid Directors.” He agreed that since about one-third of individuals with IDD have co-occurring mental disorders, this group should be regarded as a core constituency rather than a special population. Mr. O’Brien’s key message was that because of a lack of critical data, NADD can make an important contribution to enhanced community integration by analyzing available data sets and identifying lessons learned from successful programs. The most pressing need is for cost-benefit data on community-based services and supports as alternatives to residential or institutional care. He emphasized that all stakeholders must be informed about this population, including how managed care services can support them. This is essential, as services and supports will be the responsibility of payers like insurance companies and state leadership, who may not be prepared for this population.

NADD’s Family Committee representatives, Julia Pearce and Sue Gamache, emphasized that families’ basic support needs are not getting met and many encounter alarming crises, isolation and painful choices while on waiting lists for needed services. They stressed that the importance of respite care cannot be overemphasized. Even for parents who know how to navigate the system, including the “back doors,” it may take 13 or more years to get services. Parents around the country report that their children do not fit into any current system because they require multiple services and there are too many gaps between these services.

Federal government representatives from the Substance Abuse and Mental Health Services Administration (SAMHSA) and Administration for Community Living (ACL) outlined their agencies’ alignment with recommended changes for this population. A key government emphasis is on individual recovery and attainment of a full community life. There is federal recognition that the workforce trained to address individuals with both IDD and MI is very limited. SAMHSA’s Larke Huang highlighted guiding values and principles of Systems of Care that are important for this population. ACL’s Vicki Gottlich noted that the Developmental Disability and Older American Acts require ACL to advocate for people with disabilities, which is a different role than that of other Health and Human Services agencies.

Eleven disability and advocacy organizations ( ) identified their priorities in response to parents’ and federal statements. They highlighted the need for more information at the state level about individuals with IDD and co-occurring MI and the importance of strengths-based and person-centered approaches. Forty-three states use the National Core Indicators and protocols, which report that 43% of individuals with IDD exhibit self-injurious, disruptive, or destructive behavior. States are working with a myriad of managed care organizations (MCOs). Most states do not have the expertise to craft appropriate contracts, which must specify needed MCO expertise on and service networks that address individuals with IDD and MI.

MCO representatives ( ) pointed out that just as Medicaid systems vary state to state, each MCO may be very different than others within the same state or other states. They emphasized the importance of MCOs conferring with stakeholders. MCOs have an important role in developing a knowledgeable workforce by training current providers as well as the next generation. There was also discussion of a shift from service-based to community-based systems, supported by removal of traditional regulatory and funding barriers.

The meeting’s strategic planning focused on four priority areas and identified four committees to address these priorities. The first priority is collecting and analyzing available data to demonstrate costs and cost savings to spur governmental attention to enhanced community services and adoption of best practices. The second priority is coordination on behalf of this population across Federal agencies and national organizations. To that end, the two state leadership organizations that attended the October meeting, the National Association of Directors of Developmental Disability Systems (NASDDDS) and the National Association of State Mental Health Program Directors (NASMHPD), met with NADD to discuss their roles in addressing the service and system challenges of IDD with co-occurring MI. A third priority is coordination among state agencies, including identification of those moving towards inter-system collaboration, supported by a resulting white paper. The fourth priority addresses MCOs’ lessons learned from effective programs and development of state-MCO contract specifications.
NADD members interested in supporting these efforts are very welcome to join the US Public Policy Committee by contacting the Committee Chair, Eileen Elias at