Self-determination refers to the right of individuals to have full power over their own lives. It encompasses concepts of freedom in the political, economic, cultural, and social context in which people live, vote, work, participate in community activities, raise families, socialize, and otherwise relate to each other. Self-determination is achieved when individuals are full participants in family and community life, and are empowered to organize for social rights and justice for themselves and their peers.
In the United States today, many individuals with serious mental illnesses still struggle to have the fundamental right of self-determination, to make meaningful decisions about their own lives. Systemic and societal discrimination are widespread, and both families and professionals sometimes limit the individual’s options.
At the same time, many people with a mental illness along with professional and informal supporters, have organized themselves to demand basic freedoms and rights for themselves and their peers. As a result, public and private human service systems are beginning to recognize the value of promoting recovery rather than maintenance, advance planning rather than crisis reaction, and the need for personal self-direction along with professional treatment and peer support. An evidence base is beginning to emerge demonstrating that self-determination for people with all types of disabilities increases positive outcomes and satisfaction, without adversely affecting participants’ health or safety, or increasing the costs of care.
Pathways to self-determination.
Advocates, research programs, and good clinical practice tell us that self-determination can be promoted in human service systems, including those serving people with psychiatric disabilities, by facilitating:
- Access to recovery-oriented services or supports in all communities
- Development of person-centered life plans for all people who desire professional or peer support services
- Education and support for self-management of disability or illness
- Use of individual budgets (typically managed by fiscal intermediaries) that allot individuals with a psychiatric disability all or some portion of their service dollars to fulfill personal rehabilitation and recovery plans
- Rights to confidentiality of, and full access to, all records and documents about one’s self or treatment
- Opportunities to develop an advance directive for mental health care that is honored, if needed
- Development of advance crisis management plans to avoid utilization of physical restraint and seclusion in inpatient or other facilities
- Freedom from involuntary or coercive practices in all settings
- Ability to live in places separate from treatment or services
- Access to traditional mental health programs that are co-staffed by people with psychiatric disabilities
- Access to alternatives to traditional treatment, including those that are operated by peers with mental illnesses, and
- Meaningful involvement of people with mental illnesses in human service system and program design, delivery, and evaluation efforts.
The promise of self-determination for people with mental illnesses can be seen in a number of burgeoning trends.
- From Recovering to Thriving. The concept of recovery -r that people can and do experience mental health problems and then either return to pre-illness levels of wellness or learn to adapt to their disability and resume normal social roles – is gaining widespread acceptance. Many are now beginning to explore what might be considered the next step: moving from recovering to thriving. Thriving is a process whereby people’s experiences of dealing with adverse life events (such as illness, warfare, torture, abuse, or discrimination) lead them to become actually better off than they were before. Much research shows us that people can thrive after coping with an array of adversities, including mental illness. Thus, a central question for future research and policy/program development is how fostering self-determination can ensure a recovery process that includes thriving.
- A New Paradigm of Disability. The new paradigm of disability (supported by NIDRR) suggests that disability is an interaction between characteristics of an individual and features of his/her cultural, social, natural, and built environments. In this framework, disability does not lie solely within a person, but also in the interaction between an individual and his/her environment. In other words, socially inaccessible, economically unaccommodating, legally exclusionary, and emotionally unsupportive environments equally cause disability. Whereas the old paradigm views a person with a disability as someone who is personally unable to function due to impairment, the new one views this same person as someone who needs accommodation in order to experience a higher quality of life. Within the new paradigm, the search for strategies to promote self-determination shifts away from a sole focus on the person, to one that also removes barriers and creates access. In this view, providing public and personal education and advocacy would have an equal role to clinical and rehabilitative interventions in mental health.
- Self-Directed Care. One of the newest models to foster self-determination is called self-directed care (or SDC). This model reflects the notion that all or some portion of mental health service delivery dollars should directly follow the person, rather than being given to human service agencies. This approach is explicitly spelled out in the 2003 President’s New Freedom Commission on Mental Health Report (http://www.mentalhealthcommission.gov). The Report notes that placing financial support under the management of people with psychiatric disabilities and their families, with the support of staff, will enhance choices and shift incentives. In this model, service participants control funds that would ordinarily be paid to service provider agencies. These individuals develop their own person-centered plans for recovery, along with individual budgets that allocate dollars to achievement of their plans and goals. Fiscal intermediaries help people with disabilities and families handle billing, payroll, taxes, and other administrative functions, so that individuals can focus on their recovery. Support is provided, if it’s needed, to broker services and help a person manage his or her person-centered plan. A few states now have projects to promote self-directed care people with a mental illnesses (NH, FL, and OR). Other states include some people with psychiatric disabilities in their Medicaid waiver programs (http://www.cms.hhs.gov/home/medicaid.asp).
For more information on self-determination, visit these websites (which include links to additional sites):
- Express Yourself! is a new self-determination tool that lets users identify areas of their lives (such as money or relationships) where they’d like to have more control. Find out more at: http://www.psych.uic.edu/uicnrtc/self-determination.htm
- The NRTC on Psychiatric Disability, based in the Department of Psychiatry at the University of Illinois at Chicago (UIC), is a five-year program of research, training, technical assistance and dissemination activities designed to promote self-determination among people with psychiatric disabilities. Multiple resources for fostering self-determination practices and policies are available at their website: http://www.psych.uic.edu/uicnrtc/
- The UIC NRTC National Self-Determination and Psychiatric Disability Invitational Conference, Conference Papers: http://www.psych.uic.edu/uicnrtc/sdconfpapers.htm/
- The UIC NRTC repository of self-determination tools and resources: http://www.psych.uic.edu/uicnrtc/self-determination.htm#tools/
- The Center for Self-Determination: http://www.self-determination.com/
- The Florida Self-Directed Care Program: http://www.flsdc.org/about.htm
- Centers for Medicare and Medicaid Services: http://www.cms.hhs.gov/
The following references are suggested for further reading on self-determination (note, this is not considered a comprehensive list):
Algozzine, B., Browder, D.M., Darvonen, D. et al. (2001). Effects of interventions to promote self-determination for individuals with disabilities. American Educational Research Association, 71(2), 219-277.
Alliance for Self-Determination, Center on Self-Determination, Oregon Health Sciences University. (1999). National Leadership Summit on Self-Determination and Consumer-Direction and Control: Invited Papers. Portland, OR: Author.
Chamberlin, J. (1995). Rehabilitating ourselves: The psychiatric survivor movement. International Journal of Mental Health, 24(1), 39-46.
Conroy, J., Fullerton, A., Brown, M, et al. (2002). Outcomes of the Robert Wood Johnson Foundation’s national initiative on self-determination for persons with developmental disabilities: Final report on 3 years of research and analysis. Narberth, PA: The Center for Outcome Analysis.
Cook, J.A. & Jonikas, J.A. (2002). Self-determination among mental health consumers/survivors: Using lessons from the past to guide the future. Journal of Disability Policy Studies, 13(2), pp.87-95.
Cook, J.A., Terrell, S., & Jonikas, J.A. (2004). Promoting self-determination for individuals with psychiatric disabilities through self-directed services: A look at federal, state, and public systems as sources of cash-outs and other fiscal expansion opportunities. Paper presented at the SAMHSA Consumer/Family Direction Initiative Summit, Washington, DC. Download at http://www.psych.uic.edu/uicnrtc/self-determination.htm#tools/
Dale, S., Brown, R., Phillips, B. et al. (2003). The effects of cash and counseling on personal care services and Medicaid costs in Arkansas. Health Affairs, Web Exclusive, retrieved from http://content.healthaffairs.org/cgi/reprint/hlthaff.w3.566v1/
Deci, E.L. & Ryan, R.M. (1985). Intrinsic motivation and self-determination in human behavior. New York, NY: Plenum.
Deci, E.L. & Ryan, R.M. (2000). The what and why of goal pursuits: Human needs and the self-determination of behavior. Social Inquiry, 11, 227-268.
Deegan, P.E. (2004). Rethinking rehabilitation: Freedom. Paper presented at The 20th World Congress of Rehabilitation International: Rethinking Rehabilitation, Olso, Norway. Downloaded 10/06/04: http://www.self-determination.com/
Dougherty, R. (2003). Consumer-directed healthcare: The next trend? Behavioral Healthcare Tomorrow, 21-27.
Fisher, D.B. & Ahern, L. (1999). Ensuring that people with psychiatric disabilities are the leaders of self-determination and consumer-controlled initiatives. In Proceedings from the National Leadership Summit on Self-Determination and Consumer-Direction and Control (pp. 195-203). Portland, OR: National Alliance for Self-Determination.
National Council on Disability. (2000). From privileges to rights: People labeled with psychiatric disabilities speak for themselves. Washington, DC: Author. http://www.ncd.gov/newsroom/news/2000/r00-282.htm/
National Mental Health Consumers’ Self-Help Clearinghouse. (2000). Technical assistance guide: Self-advocacy. Philadelphia, PA: Author.
Nerney, T. (2001). Filthy lucre: Creating better value in long-term supports. Ann Arbor, MI: Center for Self-Determination.
Nerney, T. & Shumway, D. (1996). Beyond managed care: Self-determination for persons with developmental disabilities. Concord, NH: University of New Hampshire.