Consumer Empowerment and Engagement

Our country struggles over the use of terms like “patient” and “consumer” in healthcare services. The two terms can indicate how much power an individual has in impacting his/her services. This struggle is very evident in North Carolina’s public behavioral health and intellectual-developmental disability service arena and, some would say, that is because many individuals who seek services within the BH/I-DD system can remain in the system long-term and should have some power base in making decisions that affect their care. Over the course of several decades, North Carolina has built a BH/I-DD public system that includes mechanisms to support consumer input into the service system at an individual level and at a system level. Now the intent is to bring together services for a consumer’s physical health and BH/I-DD care. It remains to be seen if the historical mechanisms will remain in place, be strengthened and expanded, or weaken as the State shifts to public/private Medicaid/State funded managed care. Some examples of these mechanisms are:

Individual level:

• Resource Allocation model for I-DD Innovations Waiver services that includes required consumer involvement to identify the individual’s personal goals for community-integration and self-direction.
• System of Care model for child and adolescent mental health services that is designed to create a structure of community-based services and supports that partnership with children and their families to meet the family’s goals.

System level:

• Consumer and Family Advisory Council (CFAC) and State CFAC per North Carolina General Statute 122C, Sections 170 and 171;
• Required slots for consumers on LME/MCO boards of directors per North Carolina General Statute 122C, Section 118.1;
• Statutes that require appeals systems for consumers per NC General Statute 122C, Section 151.3 for State-funded services and the Code of Federal Regulations 438, Subpart F for Medicaid services.

i2i Center brings together stakeholders with different perspectives to ONE NEUTRAL TABLE to develop common goals, to better understand each other’s roles and requirements in serving a specific population, to pool resources and develop recommendations that each stakeholder and i2i Center staff can take forward collectively to effect the legislative process, policy development and implementation and local processes. The i2i Center staff builds on many years of experience in behavioral health and I-DD services, understands the importance of consumer engagement in making health care choices, and promotes mechanisms for meaningful consumer involvement in policy and legislative changes impacting their lives.

Current Priorities:

• Providing updates and education on key functions that assist consumers to navigate the system.
• Facilitating discussion on how our state will achieve meaningful consumer participation, both at an individual and systemic level, while system changes occur.
• Convening key stakeholders to come to a common understanding of the needed mechanisms for consumer engagement, the benefits and challenges of the current mechanisms for consumer engagement, and to identify policy and legislative changes needed to improve consumer engagement.

Our Goal is to Engage with:

• Consumers and family members
• State and Local Consumer and Family Advisory Councils
• Plan Managers, Advanced Medical Homes and Care/Case Managers
• NC Developmental Disabilities Council, Disability Rights NC, NAMI NC and other consumer-focused statewide organizations
• NC DHHS through the Division of MH/I-DD/SAS, Division of Medical Assistance and DHHS leadership
• Legislators and County Commissioners