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Supported Decision-Making as an Alternative to Guardianship

  • Jonathan G. MartinisEmail author
  • Tina M. Campanella
  • Peter Blanck
  • Michael L. Wehmeyer
  • Karrie A. Shogren
Chapter
Part of the Springer Series on Child and Family Studies book series (SSCFS)

Abstract

This chapter discusses Supported Decision-Making (SDM), an increasingly recognized paradigm in law, policy, and research occurring when people with disabilities meaningfully engage with trusted friends, family members, and professionals to understand the daily situations and choices they face that they may make their own decisions without the need for a court-appointed guardian and other “substitute” decision-makers. Because SDM aims to empower people to direct their own lives, often it is associated with increases in self-determination, which is related to overall improved life outcomes. This chapter will first discuss issues pertaining to self-determination in the context of how society has historically placed people with intellectual and developmental disabilities into guardianship, which decreases self-determination and can have harmful effects on quality of life. It then overviews of SDM as an alternative to guardianship. Finally, it overviews recent ways that SDM is being implemented and examined in the USA and in other countries.

Keywords

Supported decision-making Self-determination Guardianship Quality of life 

References

  1. Administration on Community Living. (2014). Supported Decision Making, HHS-2014-HCL-AAIDD-DM-0084. Accessed online on July 13, 2016 at http://www.grants.gov/web/grants/view-opportunity.html?oppId=256168
  2. American Civil Liberties Union and Quality Trust for Individuals with Disabilities. (2016). Brainstorming guide: How are we already using supported decision-making. Retrieved on July 28, 2016 from http://supporteddecisionmaking.org/sites/default/files/sdm-brainstorming-guide.pdf
  3. Americans With Disabilities Act, 42 U.S.C. § 12101 et seq. (2006).Google Scholar
  4. Blanck, P. (1998). The Americans with Disabilities Act and the emerging workforce: Employment of people with mental retardation. Washington, DC: American Association on Mental Retardation.Google Scholar
  5. Blanck, P. (2016). The first “A” in the ADA: and 25 more “A”s toward equality for Americans with disabilities. Inclusion, 3, 46–51.CrossRefGoogle Scholar
  6. Blanck, P., & Martinis, J. (2015). The right to make choices: The national resource center for supported decision-making. Inclusion, 3, 24–33.CrossRefGoogle Scholar
  7. Blanck, P., Wehmeyer, M. L., & Shogren, K. A. (2015). Understanding and increasing supported decision-making’s positive impact on community living and participation outcomes. Proposal submitted and funded by the National Institute on Disability and Rehabilitation Research: Author.Google Scholar
  8. Campanella, T. (2015). Supported decision-making in practice. Inclusion, 3, 35–39.CrossRefGoogle Scholar
  9. Cannon, S. (2016). Supported decision-making law approved by the knesset. Retrieved on July 28, 2016 from http://bizchut.org.il/en/576
  10. Center for Public Representation. (2015). Supported decision making. Retrieved from: http://www.centerforpublicrep.org/litigation-and-major-cases/supported-decision-making
  11. Crane, S. (2015). Is guardianship reform enough—Next steps in policy reforms to promote self-determination among people with disabilities. Journal of International Aging Law & Policy, 8, 177–210.Google Scholar
  12. Deci, E. (1975). Intrinsic motivation. New York: Plenum Press.CrossRefGoogle Scholar
  13. Developmental Disabilities and Bill of Rights Act, 42 U.S.C. § 1500 (2006).Google Scholar
  14. Dinerstein, R. (2012). Implementing legal capacity under Article 12 of the UN Convention on the Rights of Persons with Disabilities: The difficult road from guardianship to supported decision making. Human Rights Brief, 19(2), 8–12.Google Scholar
  15. Dinerstein, R., Grewal, E., & Martinis, J. (2016). Emerging international trends and practices in guardianship law for people with disabilities. ILSA Journal of International and Comparative Law. Google Scholar
  16. Fleming, R., & Robinson, C. (1993). Care of incompetent adults. Arizona Attorney, 30, 17.Google Scholar
  17. Golden, J. (n.d.). Self-Directed support corporations. Retrieved on July 28, 2016 from http://www.reinventingquality.org/docs/golden.pdf
  18. Hatch, M. (2015). My story. Inclusion, 3(1), 34.CrossRefGoogle Scholar
  19. Hatch, M., Crane, S., & Martinis, J. (2015). Unjustified isolation is discrimination: The Olmstead case against overbroad and undue organizational and public guardianship. Inclusion, 3, 65–74.CrossRefGoogle Scholar
  20. Herr, S. (2003). Self-determination, autonomy, and alternatives for guardianship. Retrieved on July 28, 2016 from http://ruralinstitute.umt.edu/Transition/Handouts/Self-Determination.Herr.pdf
  21. H.J.R. 190, Reg. Sess., at 5, 8 (Va. 2014).Google Scholar
  22. In re Dameris L., 956 N.Y.S.2d 848, 856 (N.Y. Sur. Ct. 2012).Google Scholar
  23. Jameson, J., Risen, T., Polychronis, S., Trader, B., Mizner, S., Martinis, J., et al. (2015). Guardianship and the potential of supported decision making with individuals with disabilities. Research and Practice for Persons with Severe Disabilities, 40, 36–51.CrossRefGoogle Scholar
  24. Khemka, I., Hickson, L., & Reynolds, G. (2005). Evaluation of a decision-making curriculum designed to empower women with mental retardation to resist abuse. American Journal on Mental Retardation, 110, 193–204.CrossRefPubMedGoogle Scholar
  25. Kohn, N., Blumenthal, J., & Campbell, A. (2013). Supported decision-making: A viable alternative to guardianship? Penn State Law Review, 117, 1111–1157.Google Scholar
  26. Lachapelle, Y., Wehmeyer, M. L., Haelewyck, M. C., Courbois, Y., Keith, K. D., Schalock, R., … & Walsh, P. N. (2005). The relationship between quality of life and self-determination: An international study. Journal of Intellectual Disability Research49(10), 740–744.Google Scholar
  27. Martinis, J. (2015a). Supported decision-making: Protecting rights, ensuring choices. Bifocal, 36(5), 107–110. Accessed online July 13, 2016 at http://www.americanbar.org/content/dam/aba/publications/bifocal/BIFOCALMay-June2015.authcheckdam.pdf
  28. Martinis, J. (2015b). “The right to make choices”: How vocational rehabilitation can help young adults with disabilities increase self-determination and avoid guardianship. Journal of Vocational Rehabilitation, 42, 221–227.CrossRefGoogle Scholar
  29. Millar, D. S. (2007). “I never put it together”: The disconnect between self-determination and guardianship—Implications for practice. Education & Training in Developmental Disabilities, 42, 119–129.Google Scholar
  30. National Guardianship Association. (2015). Position statement on guardianship, surrogate decision making, and supported decision making. Retrieved on July 28, 2016 from http://www.guardianship.org/documents/NGA_Policy_Statement_052016.pdf.
  31. National Resource Center for Supported Decision Making (2015). Everyone has the right to make choices. Available at: http://supporteddecisionmaking.org/choices_brochure.
  32. National Resource Center for Supported Decision-Making. (2016a). Sample supported decision-making agreements. Retrieved on July 28, 2016 from http://supporteddecisionmaking.org/sites/default/files/sample-supported-decision-making-model-agreements.pdf.
  33. National Resource Center for Supported Decision-Making. (2016b). Home page. www.supporteddecisionmaking.org.
  34. O’Sullivan, J. (2002). Role of the attorney for the alleged incapacitated person. Stetson Law Review, 31, 687.Google Scholar
  35. Powers, L. E., Geenen, S., Powers, J., Pommier-Satya, S., Turner, A., Dalton, L., et al. (2012). My Life: Effects of a longitudinal, randomized study of self-determination enhancement on the transition outcomes of youth in foster care and special education. Children and Youth Services Review, 34, 2179–2187.CrossRefGoogle Scholar
  36. Quality Trust for Individuals with Disabilities. (2013). Supported decision-making: An agenda for action. Washington DC: Author. Accessed online on July 13, 2016 at http://jennyhatchjusticeproject.org/node/264
  37. Regan, J. (1972). Protective services for the elderly: commitment, guardianship and alternatives. William and Mary Law Journal, 13, 571.Google Scholar
  38. Rehabilitation Act of 1973, 29 U.S.C. § 701 et. seq. (2014).Google Scholar
  39. Representation Agreement Act, R.S.B.C., ch. 405, pt. 2.8 (1996) (Can.).Google Scholar
  40. Reynolds, S. L. (2002). Guardianship primavera: A first look at factors associated with having a legal guardian using a nationally representative sample of community-dwelling adults. Aging and Mental Health, 6, 109–120.CrossRefPubMedGoogle Scholar
  41. Ross and Ross v. Hatch, Case No. CWF-120000-426 (Circuit Court of Newport News, 2013). A selection of materials from the case, including partial transcripts and material referred to in this article, can be found at http://jennyhatchjusticeproject.org/trial
  42. Salzman, L. (2010). Rethinking guardianship (again): Substituted decision making as a violation of the integration mandate of Title II of the Americans with Disabilities Act. University of Colorado Law Review, 81, 157–244.Google Scholar
  43. Salzman, L. (2011). Guardianship for persons with mental illness—a legal and appropriate alternative? St. Louis Journal of Health Law and Policy, 4, 279–329.Google Scholar
  44. Schmidt, W. C. (1995). Guardianship: Court of last resort for the elderly and disabled. Durham, NC: Carolina Academic Press.Google Scholar
  45. Shogren, K. A., & Wehmeyer, M. L. (2015). A framework for research and intervention design in supported decision-making. Inclusion, 3, 17–23.CrossRefGoogle Scholar
  46. Shogren, K. A., Wehmeyer, M. L., Lassman, H., & Forber Pratt, A. J. (in press). Supported decision-making: A synthesis of the literature to guide assessment and intervention development. Education and Training in Autism and Developmental Disabilities. Google Scholar
  47. Shogren, K. A., Wehmeyer, M. L., Palmer, S. B., Rifenbark, G. G., & Little, T. D. (2013). Relationships between self-determination and postschool outcomes for youth with disabilities. The Journal of Special Education, 48, 256–267.CrossRefGoogle Scholar
  48. Tex. Est. Code Ann. §1101.101(2015).Google Scholar
  49. Tex. Est. Code Ann. §1002.031(2015).Google Scholar
  50. Tex. Est. Code Ann. §1357.003(2015).Google Scholar
  51. Tex. Est. Code Ann. §1357.056(2015).Google Scholar
  52. Uekert, B., & Van Duizend, R. (2011). Adult guardianships: A “best guess” national estimate and the momentum for reform. In Future trends in state courts 2011: Special focus on access to justice. Retrieved on July 28, 2016 from http://www.ncsc.org/~/media/Microsites/Files/Future%20Trends/Author%20PDFs/Uekert%20and%20Van%20Duizend.ashx
  53. United Nations. (2006). Resolution adopted by the General Assembly on 13 December 2006: Convention on the Rights of Persons with Disabilities. Geneva: Author. Accessed online on July 13, 2016 at http://www.un.org/en/ga/search/view_doc.asp?symbol=A/RES/61/106&Lang=E
  54. VA H.J.R. 190, 2014 Session (2014).Google Scholar
  55. Volunteer-Supported Decision-Making Advocate Pilot Program, Tex. Gov’t Code Ann. § 531.02446 (West 2009) (Expired 2013).Google Scholar
  56. Wehmeyer, M. L. (2005). Self-determination and individuals with severe disabilities: Reexamining meanings and misinterpretations. Research and Practice for Persons with Severe Disabilities, 30, 113–120.CrossRefGoogle Scholar
  57. Wehmeyer, M. L., & Palmer, S. B. (2003). Adult outcomes for students with cognitive disabilities three-years after high school: The impact of self-determination. Education and Training in Developmental Disabilities, 131–144.Google Scholar
  58. Wehmeyer, M. L., & Schwartz, M. (1997). Self-determination and positive adult outcomes: A follow-up study of youth with mental retardation or learning disabilities. Exceptional Children, 63, 245–255.CrossRefGoogle Scholar
  59. Winick, B. (1995). The side effects of incompetency labeling and the implications for mental health law. Psychology, Public Policy and Law, 1(1)‚ 6–42.CrossRefGoogle Scholar
  60. Wright, J. (2010). Guardianship for your own good: Improving the well-being of respondents and wards in the USA. International Journal of Law and Psychiatry, 33, 350–368.CrossRefPubMedGoogle Scholar

Copyright information

© Springer International Publishing AG 2017

Authors and Affiliations

  • Jonathan G. Martinis
    • 1
    Email author
  • Tina M. Campanella
    • 2
  • Peter Blanck
    • 3
  • Michael L. Wehmeyer
    • 4
  • Karrie A. Shogren
    • 4
  1. 1.Burton Blatt Institute, Syracuse UniversityWashingtonUSA
  2. 2.Quality Trust for Individuals with DisabilitiesWashingtonUSA
  3. 3.Burton Blatt Institute, Syracuse UniversitySyracuseUSA
  4. 4.Department of Special EducationUniversity of KansasLawrenceUSA

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