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Adult guardianship can be a sensitive subject for individuals with disabilities and their families; it’s important as professionals to support families in their exploration of this topic. There are several misconceptions of what adult guardianship means, but it’s vital that families understand that there are many options in addition to guardianship and with a bit of research, review of resources, and consideration of the individual’s desire for support, an approach that is the right fight for their situation can be identified.
Misconceptions Surrounding Adult Guardianship:
•“Guardianship is all or nothing” Individuals and families are often not aware what options and supports may be available to them, as young people become decision makers. Supports needed may only be temporary, or may be needed as the young person develops skills that increase their abilities to be independent. Thoughtful consideration is needed as to what the individual is able to do now, what they could learn, what skills could be increased through experiences, and the personal impact of engaging in choice.
•“If communication support is needed, guardianship is also needed" It is often assumed that guardian ship is needed when individuals utilize alternative forms of communication. In these cases, it is important that individuals do not lose their right to advocate for themselves because it is “easier” for another person to communicate on their behalf, but rather, the support team can identify what communication supports are already established for day to day communication and how those supports can be utilized in the decision making process. This implements a person-centered planning approach.
•“Guardianship laws are updated as Civil Rights Laws are updated” Unfortunately, guardianship laws have not progressed at the same pace as civil rights for individuals with disabilities. Each state may implement laws related to guardianship differently and the family should research what is available in their state.
•“Guardian= decision maker” The concept of a guardian is shifting. Where as “a guardian” at one point may have been synonymous with a surrogate decision maker, it is now being viewed as a person responsible for implementing the decisions based upon how the individual under guardianship, themselves, would chose. So rather than “what I think is best for the individual?” the guardian will approach the situation with “how would this individual decide?” Additionally, wording used in regard to guardianship has also changed to reflect this perspective; the individual is no longer considered “a ward” but rather “a person under guardianship.”
Alternative Approaches and Resources:
•Empowering Language - Guardianship is often viewed as a logistical decision and we can forget how this influences an individual’s self-worth and perception of how others value their opinion. When approaching guardianship, it is important to keep in mind how we present each option and what we may be unintentionally portraying to the individual.
•Least-to-Most Restrictive - As mentioned, there are a variety of degrees to guardianship. A family may evaluate their options of guardianship from least-to-most restrictive. (Comment below to request a copy of PPT slides showing the continuum of options)
•Supported Decision Making - The National Center for Supported Decision Making established guidelines to help teams understand how they can support the individual’s decision making, this can be accessed here: http://supporteddecisionmaking.com/
•The Uniform Law Commission (ULC) - The ULC established a recommended national standard, and creates resources for states to use as a guide. The latest recommendation uniform act from the ULC, reviews the Guardianship, Conservatorship, and Other Protective Arrangements Act which can be found here: https://www.uniformlaws.org/committees/community-home?CommunityKey=2eba8654-8871-4905-ad38-aabbd573911c
•Varied State Approaches – families should review what is available in their state and how the state views guardianship as each state may be different. For example, some states (i.e. TX) require that guardianship be reviewed and approved annually rather than being approved for life, this ensures that as rehabilitation opportunities and as skills sets change, guardianship is reevaluated. Some states have adopted the ULC’s standard as their state’s standard (i.e. Maine) where as others have not. Additionally, some states have created a customized tool kit as a resource for families to understand what is offered in their state (i.e. Montana: http://ruralinstitute.umt.edu/transition/atg.asp)
There are various options to guardianship just as there are various preferences, abilities, and communication styles from person to person; a one-size fits all approach will not work. The more families know about their alternative options, the easier it will be to find what option is the best fit for them. If you have any specific questions about guardianship, please comment below and we will do our best to respond with ideas and resources.
Laura Benge & Theresa Baldry
Additional Resource Links:
•Texas requirements with Guardianship: http://www.txcourts.gov/media/1443314/texas-guardianship-reform_jan-2019.pdf; https://hhs.texas.gov/sites/default/files/documents/laws-regulations/legal-information/guardianship/pub395-guardianship.pdf
•National Council on Disability Report: https://ncd.gov/publications/2018/beyond-guardianship-toward-alternatives
•National Center on Secondary Education and Transition, Brief on Self Determination: http://www.ncset.org/publications/researchtopractice/NCSETResearchBrief_2.1.pdf
•Senate Special Committee on Aging: https://www.aging.senate.gov/press-releases/senators-collins-casey-introduce-bipartisan-bill-to-protect-individuals-under-the-care-of-guardians
•Supported Decision Making: http://autisticadvocacy.org/wp-content/uploads/2016/02/Easy-Read-OSF-2-Supported-Decision-Making-v3.pdf; http://supporteddecisionmaking.com/sites/default/files/NRC-SDM-Welcome-message.pdf
•Charting the Life Course Tools: https://www.tn.gov/content/dam/tn/cdd/documents/STAR-worksheet-for-Safety-Security-Supported-Decisionmaking-Updated-2-2017.pdf