February 4, 2020

Integrating Voices of System Users and Families Key to Successful System Transformation

Report on Pinehurst Conference Consumer Caucus by Sarah Potter and Laurie Coker

Close to twenty consumers, family members, and some staff from the North Carolina Division of Mental Health, Developmental Disabilities, and Substance Abuse Services employees participated in  the annual Consumer Caucus hosted at the December 2019 i2i Conference in Pinehurst.  Lively conversation focused on the need for system change to be informed integrally by the voices of system users, family members, and those who have by lived experience come to know what helps and what does not help promote healthier outcomes.

“Value:  Where public dollars purchase real and positive results in people’s lives.”                                           For over an hour, inclusion of service user and family voices especially during this time of Medicaid Transformation generated multiple separate discussions. One important issue is that service outcomes will remain inadequate until processes, including outcome targets and how they are measured, are far more informed by system users. It was agreed that our voices would raise the value of our public system, ensuring that dollars are used more effectively. (In fact, on a presentation pad at the front of the room had been written, “VALUE: Where public dollars purchase real and positive results in people’s lives.” There was concern that while there has been much focus on integrating care through Medicaid Managed Care Transformation, 1) many consumers have experienced inadequate quality and have poor outcomes from our present system as it is, and 2) the consumer and family voice would be very important to informing quality care outcomes and how best to integrate mental health, developmental disabilities, and substance use care with primary care. That is, while our Medicaid system will be reorganized with many larger administrations overseeing care in the case of the standard plans, how can we ensure that there will besufficient focus on integrally informed mental health, developmental disabilities, and substance use care and outcomes without our voices? Who is really looking out for how we are experiencing public mental health care?

Time for organizing advocacy across the divides                                                                                                       The conversation became energized around the need to formalized an advocacy movement by those with lived experience and their family members in a manner that unites diverse groups in an effort to inform, empower, and integrate our voices around key values that are critical to all our groups.

It was agreed that the upcoming changes with regard to Medicaid Transformation, such as a new focus on the social determinants of health, challenges us to think more globally and outside of old boxes. The changes allow us to direct our advocacy toward unconventional themes such as recovery, community services, solutions that call for new strategies and partners, and integration of all who would wish to contribute (inclusion!). We agreed we need to adopt common advocacy statements we can all get behind.

We discussed the current barriers to joint peer and family member advocacy. There is too much division by disability group related to separate service funding streams and the desire to protect them so services are sustained. Geographic and cultural borders exist and we need to work to dissolve borders. And how do we ensure that those who are uninsured can access the help they need?

There was extensive discussion around how to best be heard. Consumer and Family Advisory Committees (CFACS) may not be the most effective way to inform system progress. They differ by Managed Care Organizations in support and effectiveness. There are still many families and certainly consumers who are not included or even aware that CFACs exist. Who are we missing and how do we bring more people to the table? How do we compensate them for their involvement? How to we inform and educate and empower? And what about the informing voices that are to be present in the incoming managed care groups? Who is communicating and advocating with them?

Our state needs a grass roots movement that brings voices together from all parts of the state and that may eventually impact federal policy as well. We shouldn’t be driven by the system or funding sources but by our own experiences as people who use the system or no longer need to who have ideas of how best to meet needs based on our experiential knowledge. We need leadership, unification, and more guaranteed opportunities to provide valuable input in developing systems change.

Technology can be helpful                                                                                                                                                     The use of information technology and social networking offer one potential way to unite people by sharing data and identifying cross-system issues that might influence future policy changes. By uniting and building up our voices, we can better influence outcomes. Currently, there are already some helpful Facebook pages, for instance, that have been generated by advocates in an effort to disseminate information and build cohesion around issues. Additionally, it was shared that Peer Voice North Carolina, a fledgling organization of mental health recovery advocates whose establishment is being funded by a grant from the Substance Abuse and Mental Health Administration, is using technology to ensure that even as it develops, its reach extends across our state.

Informing service users about Medicaid changes                                                                                                  Besides the shared concern about the need for ensuring inclusively informed mental health system, there were concerns shared by participants, including the staff of the Consumer Advocacy and Empowerment section at the Division of Mental Health, Developmental Disabilities and Substance Use Services, that too few people using the public mental health system are sufficiently informed about upcoming system changes. The aim of preventing excessive anxiety because of the delay in the timeline, the bifurcation to standard versus specialty plans, etc. is one that we all share. Dr. Michelle laws engaged the group in discussion about this and near the meeting’s end was joined by Kody Kinsley, Deputy Secretary for Behavioral Health & Intellectual and Developmental Disabilities at DHHS. One possible suggestion was to offer separate town hall meetings for service users when state leaders go to communities to offer the informational Town Hall meetings beginning in January. They would partner with peer organizations to co-host these so participants would be more likely to participate. This is under consideration.

Summary We are hopeful at this time that we can actively help influence much needed change. It was agreed upon that the voices of consumers and families are critical to the development of a sustainable and successful system that will improve outcomes. How and where to unite was not fully understood, though participants wished for more frequent opportunities to discuss concerns in a more global manner, because coming together is absolutely necessary to improve our effectiveness and impact policy change. One participant stated that future Caucuses at this conference should be scheduled earlier with more than one hour given the diverse nature of participants and the discussion.

We need to implement mutually shared language and better inform and educate people to empower them. Medicaid Transformation and integrated care shouldn’t be something that is done to us – it is a partnership that we in. The conversation is far from being over, and more work needs to be done at the community level and shared statewide. Thank you to all those who participated in the Caucus and to the i2i Center for providing us a forum for this important exchange.