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Navigating Guardianship :Transitioning Youth & Families to adult systems

Transition

Greetings everyone !

I would like to welcome Laura Benge , HKNC Rocky Mountain Regional Representative & Theresa Baldry with the Montana Deaf-Blind Project.  Laura has been a part of the HKNC team for about a year and a half ; prior to the role of rep she worked for the state of Utah as a Deafblind Specialist. In both roles she worked closely with families of children and adults with combined vision and hearing loss, often with additional disabilities. The conversation of legal guardianship and power of attorney comes up regularly among families of consumers which led to a nice collaboration between HKNC and DB project. 

Theresa Baldry is new to the Montana Deaf Blind Project (MTDB) but has worked at the Rural Institute for Inclusive Communities since 2012 where MTDB is housed. As a parent of a young person with significant medical needs. Theresa was a part of a state collaborative effort in 2008 to develop tools to support individuals using less restrictive alternatives. The project was revisited as part of a contract through Children Special Health Services with special healthcare needs and the current Alternatives to Guardianship Toolkit was developed. This work led to Theresa being a part of Montana's WINGS (Working Interdisciplinary Network of Guardianship Stakeholders) to assist in exploring current and best practices in supporting the needs of individuals as decision makers 

This month's Trending Topic will cover Guardianship Options for Families and will be co-facilitated by Laura and Theresa. 












Mike Fagbemi

Posted 2 Mo. Ago by Mike Fagbemi

9 128 views
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Comments (9)

Hi everybody! As most of the comments on this topic are on the intro post, I thought I would copy the actual Guardianship post here for an easy reference. -LB

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.

Thank you!

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.pdfPDF

•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.pdfPDF

•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.pdfPDF

•Charting the Life Course Tools: https://www.tn.gov/content/dam/tn/cdd/documents/STAR-worksheet-for-Safety-Security-Supported-Decisionmaking-Updated-2-2017.pdfPDF

•Companion Tool: http://www.lifecoursetools.com/download/tool-for-exploring-decision-making-supports/

Laura Benge

Posted Month Ago by Laura Benge

Thank you for the question Mike Fagbemi! To me, you address exactly why we need a system that is not one tool fits all needs, which is what some people may believe guardianship is. We need a variety of tools to meet the unique needs of individuals and families; natural supports, advocacy forms, supported decision making agreements, powers of attorney, limited guardianship and full guardianship. Another important component of less restrictive options is that those tools can be updated or adjusted to meet the needs of an individual. As a person gains skills, they could move to a tool that provides less support, but doesn't leave them without any assistance if they still needed help, or be more restrictive than encourages independence. When we are not using guardianship as the only tool, we also do not have the time or expense in adjusting a court order. I have a document that gives some outline in a least to most restrictive format. Let me know how and where it can be uploaded if you would like it shared.

Theresa  Baldry

Posted Month Ago by Theresa Baldry

Thank you for adding to the discussion Debra Pickens! It is good to know that in NC, families have a resource to share about options for consideration. What is available and recognized in each state matters. And what is established in one state may not be recognized as a tool in another if a family or youth were to move. Always feel free to share information so that we can learn from each other!

Theresa  Baldry

Posted Month Ago by Theresa Baldry

We normally refer parents to the Clerk of Superior Court office in the county in which they live in NC.
They will explain the process to the parents and assist them with the paperwork for a minimum fee.
My son, who is deaf-blind decided that he needed help with his financial aid forms in college. We decided on durable power of attorney and he can fire me at anytime. I just printed a free durable power of attorney form off the computer and read it to him and signed in front of a notary public. Disability Services accepted the form at his college. Some agencies will not accept the form, however. We have a document that we give to parents that explains full or partial guardianship of the person or the estate. Let me know if you would like for me to share it with you? Thanks, Debra

Debra Pickens

Posted Month Ago by Debra Pickens

Hi Theresa , thank you and Laura for engaging us in this discussion. I was wondering since family dynamics are different and some emancipated minors need more and some need less how does that work? The young adult with significant impacted disabilities would require supports in all adult decisions regarding finances , health and living arrangements. In other instances the young adult may not have the same complexities but need varying level of supports in his or her finances etc.

Mike Fagbemi

Posted Month Ago by Mike Fagbemi

Hi Toni, to expand on Theresa's comment, there is a separate post (if you go back to the group forum and look at the recent posts) that goes in depth on how to approach guardianship and there are many links to direct resources included. Please comment on that post if you have any additional questions. Happy reading!

Laura Benge

Posted 2 Mo. Ago by Laura Benge

I would look at starting with an awareness of what the options are within your individual state. The National Center for Supported Decision Making (website listed above) has some of that information. Has your state developed tools to guide the process? If not, you may want to look to what information is available in other states or nationally. There are several resources listed above. Information as to what is being done on a national level will also be important as Adult Guardianship is not just a disability issue but also an elder care issue. The important piece is to be opening the conversation early for preparation and planning.

Theresa  Baldry

Posted 2 Mo. Ago by Theresa Baldry

Hi Laura & Theresa! Thanks for offering your time to this important topic of Navigating Guardianship. To start us off, what would you recommend for us to share with families as they are preparing for their young adult to be an adult?

Toni  Hollingsworth

Posted 2 Mo. Ago by Toni Hollingsworth

Thank you for the introduction Mike! Please go to the newest post in the Transition Group Forum to view the "Navigating Guardianship" Trending Topic. I look forward to an interactive discussion. Smiles.

Laura Benge

Posted 2 Mo. Ago by Laura Benge

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