Moving Toward Self-Direction and Self-Determination Through Person-Centered Care

Over the past two years, a great deal of energy has been focused on defending the Affordable Care Act (ACA) from being dismantled or even eliminated entirely. In so doing, some major cultural shifts that have been occurring as a result of the ACA have been neglected. These are what I would like to highlight today. Although its roots are very deep and extend back several score years in the behavioral healthcare field, the culture of person-centered care has been a pivotal feature of the ACA. This new approach speaks volumes: We have moved beyond provider-centered care; we have moved beyond silo-centered care; we have moved toward integrated care; and we have moved toward self-directed care. In and of itself, each of these changes is quite major. Taken together, they actually reflect a monumental cultural upheaval in the norms governing behavioral healthcare and healthcare more generally. Let me deconstruct these changes a little further. For centuries, behavioral healthcare has been provider-centric. Although very well intended, this paternalistic/maternalistic model actually can smother recovery. Recovery requires that a person regain his/her voice and action, and become fully able to express both in personal decisions about care. Person-centered care now is beginning to provide a very supportive context to foster this essential outcome. Likewise, behavioral healthcare always has been separated from general healthcare. This has had the effect of separating mind and body, with the very sad consequence of high levels of health morbidity and early mortality among persons with behavioral health conditions. Through new integrated care approaches supported structurally via the ACA, person-centered care has begun to put mind and body back together again. In the past, behavioral healthcare has been guided almost exclusively by the care giver. The very notions of “service recipient” and “care receiver” highlight the passive role of the person seeking care. Now, very fortunately, this is beginning to change in the direction of self-directed care. Clearly, an entirely new set of skills is needed by a caregiver in order to offer care based upon the principles of self-direction. Person-centered care is fostering this fundamental change. The Administration for Community Living (ACL) in the U.S. Department of Health and Human Services has been at the forefront of efforts to promote person-centered care. The ACL website states very clearly: “ACL believes that every person has the right to make choices and control the decisions in their lives. This right to self-determination includes decisions about where to live, decisions about work, and all the other daily decisions most adults make without a second thought. Older adults and people with disabilities are unique individuals, and the help they may need is unique, as well. These programs focus on helping ensure that the preferences and the needs of older adults and people with disabilities are at the center of the system of services and supports that enable them to live the lives they want to live.” And further: “The philosophy of consumer control touches every ACL program, with several initiatives aimed directly at advancing consumer control: Person-Centered Planning allows individuals to be engaged in the decision making process about their options, preferences, values and financial resources. Supported Decision Making is an alternative to guardianship that keeps control in the hands of the individual, while providing assistance in specific ways and in specific situations that are useful to the person. Transportation that is accessible is a critical component of community living for older adults and people with disabilities. Through an inclusive transportation program, ACL works with communities across the country to give travelers a voice in the planning process and to improve transportation options. Veterans Directed Home and Community-Based Services (VD-HCBS) Program provides veterans with opportunities to self-direct their long-term services and supports and continue living independently at home.” Most definitely, all of these changes have huge potential for those seeking recovery from behavioral health conditions. Collectively, they portend self-determination of one’s own life—living situation, friends, job and community. Person-centered care is a vital step for achieving the twin grails of self-direction and self-determination.