Missouri Developmental Disabilities Council's Position Self-Determination and Guardianship

Everyone has a right to make their own choices about their lives. Most adults make their own legal decisions, but some people with disabilities don’t get to. That’s because some people with disabilities have guardians. Guardians can make legal decisions for a person with disabilities. A judge chooses who will be the guardian for a disabled person. It is usually a parent or family member. Guardians can make choices even if the person with a disability doesn’t like it.

When a disabled person gets assigned a guardian, it’s called a guardianship. Guardianships should only get used as a last resort. People with disabilities should get to try every other way to help them before trying guardianship. People shouldn’t be put under guardianship just because they have a disability. Guardianships shouldn’t take away any more rights than they have to. Guardianships should help people make their own choices when used the right way.

Why is this important?

Studies show that people with disabilities have better lives when they have more self-determination. Self-determination means having control over your life, and making your own choices. People with more self-determination are more likely to have jobs and live on their own. They also live safer lives.

Guardianships take away people’s ability to make their own decisions and control their lives. Many people live under guardianships that take away more rights than they need to. This hurts people, makes them less healthy, and makes their lives harder.

One study found that 9 in 10 guardianships gave peoples’ guardians control over all their rights. Another study found out most prisoners had more rights than people under guardianship.

We know that people who can make their own decisions do better in many ways. They are more likely to have jobs, have friends, and live on their own. They are more likely to be a part of their community. And it’s now possible for more people to live on their own than ever before.

The number of people in guardianships has tripled since 1995. Researchers looked at reasons why. One thing they found was a “school to guardianship pipeline”. This means students were being placed in guardianships during, or right after finishing school.

Many people with disabilities can live and make decisions on their own. For the people who can’t, there are many good choices besides guardianship. A few of these are:

Special Needs Trusts
Powers of Attorney
Advanced Directives
Representative Payees
ABLE Accounts
Supported Decision-Making

A study looked at young adults who used Supported Decision Making. It found they were more independent and believed in themselves more. They learned about making good decisions. And they were able to make better decisions.

The National Guardianship Association is a group for guardians, run by guardians. They say people should try all the other choices before putting someone under guardianship.

What should Missouri do?

Missouri should respect everyone’s right to make their own decisions. We must let people take control of their own lives as much as they can. Just because someone is disabled doesn’t mean they can’t make choices.

Disabled people and their families should get information about other choices besides guardianships.

People who work in:

Education
Health Care
Banking
Law

should also get training and information about other choices besides guardianships.

Missouri should help people explore and use choices besides guardianships. For example, they can make resources to teach people about Supported Decision-Making. People should get help that fits their abilities and interests.

Students should get information about options besides guardianships as part of transition services. Missouri should think about making rules that make schools do this. Virginia is one state that has already made this rule.

Missouri should train lawyers, judges, and would-be guardians to make sure that:

They know and follow the laws
People who might get a guardian know they have the right to a lawyer
Guardianships don’t take away more rights or freedoms than they need to

MODDC should help advocate for Supported-Decision Making and other choices besides guardianship. They can work together with the National Association of Councils on Developmental Disabilities and the Social Security Administration.

To Learn More

Karrie A. Shogren et al., Relationships Between Self-Determination and Postschool Outcomes for Youth with Disabilities, 4 J. Special Educ. 256 (2015); Michael Wehmeyer, et al., Self Determination and Positive Adult Outcomes: A Follow-Up Study of Youth with Mental Retardation or Learning Disabilities. Exceptional Children, 63(2), 245-255 (1997). Ishita Khemka et al., Evaluation of a Decision-Making Curriculum Designed to Empower Women with Mental Retardation to Resist Abuse, 110 Am. J. Mental Retardation 193 (2005).

Peter Blanck & Jonathan Martinis, ‘The Right to Make Choices’: The National Resource Center for Supported Decision Making, 3 Inclusion 24-33 (2015).

Margaret Hatch, Samantha Crane, and Jonathan Martinis, Unjustified Isolation is Discrimination: The Olmstead Case against Overbroad and Undue Organizational and Public Guardianship. Inclusion, 3(2), 65-74. (2015)

Jennifer Wright, Guardianship for Your own Good: Improving the Well-Being of Respondents and Wards in the USA. International Journal of Law and Psychiatry, 33(5), 350-368 (2010).

Pamela Teaster, et al., Wards of the State: A National Study of Public Guardianship. Stetson Law Review, 37, 193-241 (2007).

H.R. Rep. No. 100-641, at 1 (1987).

Valerie Bradley, et al., What do NCI Data Reveal about the Guardianship Status of People with IDD?. (2019). Available at: https://www.nationalcoreindicators.org/upload/core

indicators/NCI_GuardianshipBrief_April2019_Final.pdf

Winsor C. Schmidt, Guardianship: Court of Last Resort for the Elderly and Disabled. Durham, NC: Carolina Academic Press (1995); Sandra L. Reynolds, Guardianship Primavera: A First Look at Factors Associated with Having a Legal Guardian Using a Nationally Representative Sample of Community Dwelling Adults. 6 Aging and Ment. Health, 109-120 (2002); Brenda K. Uekert, Richard Van Duizend, R., 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 (2011).

National Council on Disability. New Federal Research Examines Guardianships of People with Intellectual and Developmental Disabilities, finds School to Guardianship Pipeline. (2019) Available at: https://ncd.gov/newsroom/2019/new-federal-research-examines-guardianships

onathan Martinis & Peter Blanck, Supported Decision-Making: From Justice for Jenny to Justice for All. A Theory to Practice Guide. Virginia: Something Else Solutions Press. (2019).

Jonathan Martinis & Lucy Beadnell. (2021). “I Learned that I have a Voice in my Future:” Summary, Findings, and Recommendations from the Virginia Supported Decision-Making Pilot Project. Available at: http://www.supporteddecisionmaking.org/node/488

National Guardianship Association, Position Statement on Guardianship, Surrogate Decision-Making, and Supported Decision-Making, available at:

http://www.guardianship.org/documents/NGA_Policy_Statement_052016.pdf

Lucy Beadnell & Jonathan Martinis, Re-thinking Guardianship and Substitute Decision-Making: Supported Decision-Making and the Reform of Virginia Law, Policy, and Practice to Protect Rights and Ensure Choice. Developments in Mental Health Law 39(1), 1-13 (2020).