PRESENTATION TO THE SIM STEERING COMMITTEE DECEMBER 10, 2014 CATHY BUSTIN, DISABILITY RIGHTS CENTER LYDIA RICHARD, ADVOCACY INITIATIVE NETWORK BETTY ST. HILAIRE, MAINE OPTIONS DELIVERY SYSTEM REFORM SUBCOMMITTEE CONSUMER/FAMILY AD HOC GROUP OF BEHAVIORAL HEALTH HOMES WORKING GROUP Mitigating the Risk of Lack of Meaningful Consumer and Family Involvement

Inspirational Quote “Coming together is a beginning. Keeping together is progress. Working together is success. ” –Henry Ford

SIM and Consumers “Widespread multi-stakeholder support and commitment for the Innovation Model is exemplified by the comprehensive and specific commitments of the participating Primary Care Providers and Health Systems, Behavioral Health Providers, Payers, Purchasers, Professional Organizations, and Educational Institutions.” Component #6 – Increase Patient Engagement --From the SIM grant application

Engagement vs. Involvement Consumer / Family Engagement = Meaningful Consumer/Family Involvement:  Right?!  NO! Providers and Professionals often use and understand these terms differently than consumers and families! They are not interchangeable!

But… The value of Engagement and Involvement is similar: “Nothing About Us, Without Us.” And Increased quality and effectiveness of services

Engagement definition ENGAGEMENT refers to an individual consumer/patient’s level of active participation in their own treatment or service plan, and/or, that of their family’s. This term references INDIVIDUAL consumer/family relationship and interaction with the provider.

Consumer/Family Involvement definition MEANINGFUL CONSUMER/FAMILY INVOLVEMENT refers to the SYSTEMIC INCLUSION of current or former service recipients/consumers, their families/parents and their designated organizations in the design, development, funding, delivery, and evaluation of health care services.

What does this mean to providers? Using shared decision making tools Person-centered treatment planning Client-directed services Incorporating peer specialists, peer support, peer navigators into delivery teams

If providers are doing this… Have they achieved meaningful consumer/family involvement in their organization, initiatives, programming?  NO! WHAT?!

The Need While using these tools is the result of decades of Consumer/Family advocacy, there is a need for consumers/families to be full policy partners in health care systems. Many consumer/family members are experiencing a loss of voice in systems designed to include their needs. This includes the SIM initiatives.

How to address? Go to identified Consumer/Family/Parent Organizations and seek feedback on initiative design. “Inclusion is a mindset. It is not a program we run or a favor we do for someone.”

Recommendations How can SIM continue its efforts to involve consumers and families as full partners? 1. Seek to expand understanding of consumer / family experience of Meaningful Involvement/Inclusion 2. Acknowledge and understand the power differential around the table 3. Appoint people on each committee/advisory council, etc. to implement the readily achievable recommendations

Recommendations 4. Create a glossary of frequently used acronyms and definitions of terms for easy reference 5. Create and distribute a comprehensive list of consumer/family/parent representatives on each committee, sub committee, council, project or initiative involved with the SIM grant efforts. Include names and contact information of organizations represented if applicable. 6. Create and distribute a list of all SIMS related activities and who to contact for involvement/information

Recommendations 7. Ask staff of all sub-committees to recruit mentors for new members or those seeking additional information regarding meeting subjects. 8. Recruit people to form a working group at the top of the SIM structure to guide and monitor continued efforts at achieving Meaningful consumer and Family Involvement throughout SIM reform work.  Ensure that qualified representatives from all SIM partners are included, to expand “ownership.”

Recommendations 9. Endorse, support and continue expanded, comprehensive dialogue between all initiative partners.  Thank you for creating a space for a breakout session at the annual meeting.  Partner with DHHS, providers, advocacy organizations, to create ongoing dialogue and discussion forums on achieving meaningful inclusion

Be the Change This is a systems-wide need. This innovation effort could be the model and the need. “Of all barriers to full participation and inclusion, the barrier of unexamined attitudes is the most difficult to address.” -Ginny Thomburg