NATIONAL RESOURCE CENTER FOR SUPPORTED DECISION MAKING SUBAWARD:

CENTER FOR EXCELLENCE IN SUPPORTED DECISION MAKING VOLUNTEERS OF AMERICA MN

Final Report August 30, 2019

Project Description

In October 2018, VOA MN's Center for Excellence in Supported Decision Making (CESDM) was

awarded a state grant from the National Resource Center for Supported Decision Making to increase

Minnesota's awareness and use of supported decision making (SDM). At 281 miles horizontal width and

385 miles vertical length, 7326 of the state's 86,936 square miles are water. Approximately 60% of the

state's population lives in the Twin Cities Metropolitan Region of Minneapolis, St. Paul, and surrounding

suburbs. This means there are many parts of the state that are both relatively sparsely populated and

under-served by city-centric outreach and educational presentations.

This project sought to address these disparities by providing in-person and web-based educational

presentations to communities in Greater Minnesota that were geographically under-served. These

trainings provided essential information and tools to promote SDM, increased understanding about the

pitfalls of overutilizing guardianship, and provided participants support and information about how to

advocate for this approach with medical, educational, and social service professionals with whom they

interact.

In collaboration with community advocacy organizations, the project also organized listening sessions to

ensure people directly impacted by guardianship and other decision-making options have a seat at the

table in promoting SDM in MN, something that has been missing to date. A key strategy was to invite

these stakeholders to help formulate the listening session structure and facilitate the listening sessions,

according to their comfort level and interest. We also sought to identify persons impacted by

guardianship or SDM and/or their supporters who would be interested in co-presenting in some of our

live and/or virtual educational sessions, enabling audiences to hear from and interact with people with

lived experience and the impact of guardianship and SDM on their lives.

The overarching goal was, and remains, to influence policies and practices promoting SDM in Minnesota,

to reduce over-reliance on guardianship and promote the benefits of self-determination in enhancing the

quality of life of people otherwise at potential risk of guardianship.

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Anticipated Outcomes

• Identification of geographical areas of state which are unable to fund training programs

• Cultivation of relationships of advocacy organizations to gain buy-in and plan listening sessions

• Introduction and more in-depth exposure to SDM in Greater MN

• Increased understanding of users' experiences and hesitation about SDM

• Identification and promotion of actual success stories for wider dissemination of the value of

SDM

• Contribute to collective body of knowledge and success stories concerning use of SDM as a

viable alternative to unnecessary guardianship

Approach

Several approaches were planned to promote SDM among professionals and individuals and their

families, and to include people with lived experience in meaningful ways.

• Provide three to four educational presentations to professional communities in Greater Minnesota that

would otherwise be unable to fund the costs of such trainings to provide stakeholders with essential

information and tools that will promote SDM, increase understanding about the pitfalls of

overutilizing and obtaining unnecessary guardianships, teaching participants how to advocate for this

approach with the medical, educational, and social service professionals with whom they interact.

CESDM also planned to identify prospective self-advocates who have experience with guardianship

and alternatives, and who would be interested in co-presenting on these topics to communities in

Greater Minnesota.

• Provide four web-based educational sessions through the Facebook Live platform, to further engage

stakeholders that would not otherwise have access to interactive SDM educational experiences.

Participants would have the opportunity to gain information relating to SDM and learn about tools

and strategies that will increase the adoption of SDM throughout the state. Through a live call-in

feature these sessions will also provide an open question and answer period.

• Offer at least four live and/or virtual listening sessions in partnership with other non-profit

organizations such as Arc and Proof Alliance, inviting people directly impacted by guardianship and

other decision-making options to share their experiences, and hear from them about how they utilize

supported decision making in their daily lives, to help inform policy and practice direction in

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Minnesota, and enable project staff to hear firsthand their opinions, experiences, successes and

challenges.

Activities, Achievements and Progress Made Toward Achieving Outcomes

Presentations

The Center for Excellence in Supported Decision Making is well-known in many Minnesota communities

for its work with individuals, families, and the professionals (residential, social services, health care) who

serve them via the statewide Guardianship Information Line in-depth consultations and our in-person

work with individuals and families in the Twin Cities Metropolitan Area. CESDM also provides

community education and engagement activities via professional education presentations, and the Project

Director's role as Co-Facilitator of Minnesota's Working Interdisciplinary Network of Guardianship

Stakeholders (WINGS MN). Through all of these contacts, word-of-mouth, contacts at MN's Department

of Human Services, and communication with WINGS MN community, CESDM connected with regional

representatives (see Appendix A: Minnesota Social Services Association Regions) and responded to

direct requests for continuing education sessions in areas of the state that had previously had little or no

recent presentations on supported decision making.

During the grant period, in addition to presentations on related topics external to the grant, CESDM

provided nine supported decision making presentations around Greater Minnesota to approximately 335

professionals, 34 family members, and 30 self-advocates, a total of approximately 399 people benefited

from Supported Decision Making: An Emerging, and Ethical, Alternative to Guardianship (target

audience: professionals) or Rethinking Guardianship for Transition Age Youth (target audience: families

of people living with intellectual/developmental disabilities (IDD) and the individuals themselves ("self­

advocates"). (Appendix B & C). These presentations were held in Northwest Minnesota (MSSA Regions

1&2: Thief River Falls), Northeast Minnesota (MSSA Region 3: Mountain Iron (2) and Duluth(2)),

Western Minnesota (MSSA Region 4: Moorhead), Southwest Minnesota (MSSA Regions 6&8: Wilmar),

and Southeast Minnesota (MSSA Region 10: Owatonna).

Participants at every educational session were asked to evaluate the program in a number of areas

including overall quality; promoting alternatives to guardianship, and promoting tools for doing so.

Participants were also asked to identify whether they gained at least one actionable idea, as well as

barriers or challenges to implementing this idea; and provided space for open-ended input.

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Interesting themes emerged in reviewing the open-ended feedback, indicating the value of presentations

in prompting professionals to identify actionable ideas to take back to work setting:

• Better understanding of the concept of supported decision making and increased confidence to discuss

such with others was frequently mentioned. For example: I understand supportive decision making

better and could better guide staff as they work with clients and families II Being able to discuss

options II How to educate people in working with individuals, how to help make decisions instead of

doing it for them II As a school social worker parents ask me about guardianship so now I am able to

discuss options! II How to talk to concerned parents II Ways to have discussions with families on

options to regular guardianship II Better understanding of SDM tools II I plan to use these tools in my

Adult Protective Services work II Tool to use to think more about alternatives II Less restrictive

options to suggest to clients/family // Can inform people about supportive decision making II

Provided information to initiate conversation with guardians & clients re: options II Help answer

questions for parents considering guardianship of their children (soon to be 18) II Identifying when

supported decision making would be more appropriate than guardianship II Promoting SDM - ability

to have discussions with client & family II Options besides guardianship, learning SDM term: we do

it now without calling it that II I have the confidence to go back and have discussions with

professionals regarding their decisions to be able to be a support for co-workers in their decision to

utilize SDM over guardianship II Support my clients [to] terminate guardianship. I will think twice

before automatically establishing guardianship at age 18 II Tools to offer client & families with

decisions pertaining to guardianship II Greater discussion regarding need for guardianship II Better

insight of SDM II Continue to advocate for clients on their rights II Tips for working with other

professions (i.e., medical providers) in advocating for SDM II To question others as how we are

already assisting with decisions and to give persons time to be at their best II More and more states

promote SDM II Better ways to explain what SDM is, using the language more effectively II

• Specific tools and resources were frequently mentioned as a benefit of attending the trainings.

Tools/worksheets to work with families on determining if guardianship is appropriate II Resources to help develop SDM plans along with person centered plan II Good tools to use & help with exploring

other options first II SDM agreement II Supported Decision Making Agreement II I never knew there

were forms for SDM II Use HCD & POA & Rep Payee or Auth Rep instead of Guardianship

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• Many participants reported a change in the way they will approach/assess a client or whether

guardianship may be needed as a result of the presentation:

Take a good look if need guardian or not - look at alternatives versus guardianship II Look at the big picture. What specifically does the individual need help with and what systems can be put in place

that are the least restrictive II Guardianship is not always the answer; to see what other support can

help instead II Build team to assist [individual] with decisions rather than jump right to guardianship

II Using supported decision making daily practice in all cases II Different way of thinking toward

guardianship II Really consider if all powers are needed when needing to look at guardianship for a person II Considering limited guardianship as a step-down II How to change our view of

guardianship II Utilize SDMfirst II Different ways to view guardianship needs II Alternatives when

people do need help in certain areas II Using some tools with parents of almost 18 year-olds II

Identifying alternatives to guardianships - do as a team II Build supports to address vulnerability,

don't take away rights. Guardianship just doesn't work for behaviors II Guardianship as last resort

II I certainly will look at this with different eyes- better questions for clients. Exited to realize that

many of our people do not need a guardian II Not using guardianship as an automatic solution II

Develop Guardianship policy to include SDM first II Ask more questions about if the guardianship is really the right direction to help this person II To really think creatively (ask questions) about

alternatives for each individual II That my clients' wants/needs are very important & to use these

skills in helping the client make decisions that are safe, work with the client II Breaking clients' needs

down - maybe only need someone to help with finances - don't need a guardian II Thinking about if a person actually needs a guardian or can we put other supports in place instead II To identify in what

area a person would be incapacitated "to do what" (x3) II Incorporate SDM Agreement/concepts into

case planning II I learned about more options than just straight fall guardianship II Where to find

tools/resources II Looking at options such as POA, Health Care Directive II Help youth transition to

adulthood without guardianship II Guardians are not always needed! Use supportive decision making

II Examples of ways to think outside of the norm and suggestions that can be made II Termination of

guardianship for an individual can truly be beneficial II Potential to reevaluate need for guardian by

age 30, if guardianship was established at 18 II Not everyone needs a guardian II Looking at what

would it take to bring to assist that would avoid guardianship. Good questioning discussions II Be

more consistent with having Health Care Directive discussions with patients, offering resources to

get the HCD completed with patient is stable II Implementing care and avoiding guardianship as

default

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• As a result of attending the sessions, a number of professionals stated an intention to review existing

client base and existing plans to obtain guardianship, as exemplified in this comment:

Need to review existing clients with guardian/conservator in place & address if they could be supported in a different way to eliminate the guardianship/conservators hip

Themes also emerged as participants contemplated barriers or challenges to implementing their ideas.

• Difficulties around systems or culture change:

Not a statute. People can become stuck in their ways II New ideas get pushback II Conflict with other

providers surrounding client II It can be difficult to get other community members/providers to agree

to this II No statute in MN II Families, providers, and court system II I also serve transition age DD

population and I feel I will receive backlash from not supporting families' wishes II some providers

push for guardianship II Family & providers beingfearful of letting people make mistakes II Our

County Attorney will not do limited guardianships, only full II Only my own barriers need to change

my thinking II When I've used SDM even when someone has a guardian, the guardian made it clear

he knew the client longer so he knew what was best II People set in their old ways of thinking II Our

agency has a history of looking at guardianship first! II Providers, current guardians who feel power

is greater than it is II In Adult Protection often feel reporters want us to "fix" to ease their fears/concerns about issue II Challenging current systems/historical practices II To get other

professionals to accept this as a viable solution rather than take away rights II Would take a

paradigm shift! II Status quo to pursue guardianship to "keep a person safe" II

• Lack of training, exposure, understanding by other professionals and families

Working with other professionals or families who don't yet buy into this idea II Getting others on

board II Most people have a hard time understanding that guardianship is not the only options II

Skeptics II Physicians and medical providers having different knowledge base II Families'

expectations & professionals' expectations, i.e., what they want II Placements & providers

encouraging guardianship, "fear mongering" II Resistance from medical providers/schools // Still

ongoing issues with hospital & nursing homes as they often require guardians II Families II Working

with the medical community II Convincing parents that this can work II County Attorney needs to be

educated on using ... alternatives rather than jumping to guardianship II Judges sometimes grant all

powers even if court visitors suggest limited - need education for them also II Some professionals

(medical field, attorneys) think guardianship is the answer to fix everything II

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• Not everyone has a support system they could turn to:

The clients I work with don't have much or any family support. Health Care Directives would be

tough due to providers not being able to fulfill the role to make these tough decisions II When there is

no one II Lack of resources. Lack of support II Lack of available supportive people to assist with

decisions

• Concerns about the clients themselves:

Clients with MI/CD primary instead of DD II What to do when an individual meets criteria for

guardianship & then after months of mental health treatment, no longer seems to need guardianship

and guardianship was just secured, do you ask for it to be terminated after money just spent to get? II

Human resource, everyone has bad days, but some people rarely have good ones & will cause more

work. People who can use SDM already do.

• Many professionals are concerned about the families themselves having a hard time with new

approaches, either due to fears for safety, or fears of losing control

Family or others working with the individual may not agree with this position II Parents who are

guardian being resistive / Family/friends/supports will have an issue giving up guardianship/their

control II Family guardians will struggle with the idea of letting go of control// Guardian's fear of

allowing the client to make decisions with risks and watching the negative consequences II Old­

school way of thinking. Parents want the power to control their children II Parents won't agree, still

see their son or daughter as a child II Fear caregivers have that someone will make a mistake II

Convincing families (people's fears) II Families of clients feeling guardianship is the only way to help

their family/neighbor, etc. and keep them safe and healthy II Some families might not agree II

Families that want control over a person II

Feedback from families who attended educational sessions was very positive. This may be a "preaching

to the choir'' effect: perhaps families who attended were already more curious about the positive

possibilities that SOM could have on their lives and the lives of their adult children living with

disabilities. Examples of how the participants gained an actionable item to use in their personal lives:

Paradigm shift of re-thinking and providing support II I realized I do not need guardianship for my

daughter. We will use the "Missouri" tool to see how we are doing II Will pursue termination II Will be

looking at on-line resources II Opened up options that I didn't know existed II This session was amazing

and offered exactly where our family is at this time. Giving additional verbiage to use in social

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conversations with family. So grateful II the dignity of risk = humanity II Guardianship can be changed II Guardianship is not required by MN law

Families did, however, also express concerns about challenges they'll face: attitudes/fear II acceptance of

alternatives to guardianship II other family members' resistance to SDM vs. Being a guardian II No one

likes someone making decisions for them, but there are times when individuals need the help. Not all

decisions but some, this makes it gray. Authorities no longer want to get involved because they fear

lawsuit II Former guardian giving up their rights II

One self-advocate who attended the family informational session on supported decision making

responded was also excited about the prospects, adding: Cool. Do it. Another stated: Great to do it. Be

[ of] help to your staff

Listening Sessions To prepare for Listening Sessions, CESDM convened a meeting with local community professionals

whose organizations have state-wide connections or affiliates to enhance collaborative opportunities and

enhance the success of the sessions: Honoring Choices Minnesota; The Arc Minnesota, MN Proof

Alliance (formerly MN Organization on Fetal Alcohol Syndrome), and the University of Minnesota's

Center on Community Integration. Representatives from these organizations assisted CESDM with

planning and sharing information about the sessions with their members. Next, we partnered with Barb

Kleist, Program Director at the Institute on Community Integration who significantly assisted with

development of the framework and agenda for our Listening Sessions (Appendix D).

The structure of the Listening Sessions was designed to provide consistency across sessions, with

flexibility for adaptation to unique circumstances. For example, the framework allowed for free-standing

sessions, or two-hour sessions to be held in conjunction with family education session, where we spent

approximately one-half hour with families and self-advocates together for introductory ice-breakers and

general information about types of decision-making and conversation about how we all make decisions

before breaking off for self-advocates to participate in a Listening Session and families (as well as those

self-advocates who chose to remain with their family members) to remain together for further education

on supported decision making and guardianship (Appendix C).

Finally, CESDM began outreach to schedule and promote self-advocate Listening Sessions as stand-alone

events and/or in conjunction with professional and family education sessions (Appendix F). Over the

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course of this nine-month grant period, a total of six sessions throughout Minnesota were scheduled: two

had no attendees, one was cancelled due to a blizzard. The most well-attended meeting (approximately 22

attendees: self-advocates with a few supporters) was held as a breakout session at the biennial Self­

Advocates Conference, sponsored by Advocating Change Together, with attendees from across

Minnesota. Other sessions were held in Duluth (northeastern MN), scheduled to occur concurrently with

an educational session for families, and had 13 self-advocates, and another in Thief River Falls in

northwestern Minnesota, with one self-advocate and two of her professional supporters.

Listening Sessions were led by a facilitator(s) and assisted by a scribe to ensure all contributions of

attendees were captured for later reflection. We also provided snacks and gift cards to self-advocate

attendees for incentives and in appreciation of their risk-taking in sharing themselves and their

experiences with us. We provided pens, story-telling templates, index cards, and post-it notes to

encourage written or pictorial contributions for people who were uncomfortable or unable to participate in

the verbal discussions. We also utilized white boards or easel pads of paper to document all the

contributions to the questions and photographed these to assist us in later summarizing the meeting

contributions. (Appendix F)

As we had hopefully anticipated, self-advocates had a great deal to say, both in Listening Sessions and in

educational session we presented at the Self-Advocates Conference about rights they retained under

guardianship, about how guardianship impacted their lives, how they utilized trusted others to support

them in decision-making, what is going well about decision making, and what they wish were different.

With regard to interacting with their guardians, and trying to better understand their rights, we heard from

an advocate attending the rights educational session that they know of an individual whose guardian

refused their ability to attend the conference, because, in the advocate's view, the guardian feared the

person would learn things that would lead to him wanting to do things/not do things that guardian didn't

agree with. An attendee of the rights session described how her (professional) guardian attempts to gain

compliance with rules and consequences unrelated to the behavior, e.g., can't do social activities if don't

eat healthy diet/take meds, etc.

It was disconcerting to hear how often self-advocates or their advocates and allies mentioned that they

feel their decisions are being made by strangers. This included situations where some people have had a

series of three, or even five different guardians, or even just one guardian, but when these are public or

corporate guardians, individuals often feel the guardians aren't listening to them, and don't truly know

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them. We heard of situations where guardians try to control people by taking away, or threatening to,

personal property ( violation of MN Bill of Rights For Wards and Protected Persons), or so drastically

restricting cigarettes that the person resorts to smoking cigarette butts left in ashtrays by peers or staff.

Self-advocates expressed a great willingness to learn how to make better decisions, a desire to gain

confidence in decision-making, and a desire for help from trusted others to make decisions. They

identified multiple people that they tum to in their lives for help with decision making, or even just to

"talk it out", such as friends, family, and people who are part of their vocational, residential, social, and

medical teams.

It was at first surprising, and wonderfully reassuring, to hear and observe how often and effectively self­

advocates tum to their peers for general support and in specific areas of decision-making: housemates,

friends, boyfriends/girlfriends were all mentioned as people they tum to when they want help thinking

about or making a decision, in addition to family members, professional and paraprofessional support

staff. It is important for professionals to understand the value of peer support, and that friends are a vital

source of supported decision making for self-advocates, just as they are for the rest of us. Because many

professionals in the educational sessions expressed concern about how SOM would work for people who

"have no one" these findings are important: that even people who have no family or are disconnected

from family are already forming their own support teams organically, turning to peers, and professionals

for support. As long as professionals are mindful of the need to avoid imposing their own values on

people they are supporting, avoiding conflicts of interest, and as long as the individuals are given space to

ultimately make their own decisions, there is nothing inherently inadvisable about professionals (job

coaches, case managers, ILS staff, therapists, doctors, home care and residential providers) being an

integral part of supported decision making teams for individuals, along with peers and family/community

members.

We were struck by the insight and awareness of the self-advocates at Listening Sessions: many of them

know who they can tum to and feel comfortable asking for help/working through decisions, but wish they

had the actual opportunity to make a decision as well as learn and grow from them. It all boils down to

what everyone else wants: a communicative support system built around trust, that allows them to try

things and make decisions, receiving guidance and respect from their providers, decision-makers, and

supported decision making teams.

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CESDM Facebook Page Launched

Though CESDM is represented in the Facebook and Twitter accounts of its parent organization, VOA

MN and WI, this project enabled the launch of a CESDM specific Facebook page, dedicated to increasing

awareness of SDM, local and national resources, and bringing information and education to the audience

in a more dynamic and current way than webpages typically support. helping us to reach more people,

especially as we continue to grow our audience, through this sustainable, educational platform. CESDM

continues to comb news and other resources to post relevant stories, photos, and events to the page, but

has not yet garnered sufficient numbers of followers to justify virtual chatrooms and live Facebook

educational sessions as of the end of the grant period. CESDM social workers have partnered with Proof

Alliance on a number of occasions with their Virtual Family Caregiver live chatroom conversations to

discuss guardianship, supported decision making, and related topics. Though we were overly optimistic

in how quickly we could build a sufficiently large following, we continue our efforts and longer-range

goals of making this a trusted and easy source of information about SDM in Minnesota, including live

and recorded educational sessions. Aware that we have enjoyed increases in engagement after we post

our own videos, we plan to continue posting videos featuring reflections, upcoming events and CESDM

news. www.facebook.com/cesdmvoamn/

Templates for Gathering Stories

Sharing successes and challenges of utilizing supported decision making instead of, within, or in relation

to terminating guardianship is critical for professional, family, and community members to operationalize

supported decision making, and how it promotes self-determination and improves quality of life while

protecting basic civil rights and avoiding unnecessary guardianship. To that end, CESDM has made a

concerted effort to invite individuals and their supporters, as well as professionals, to share their stories.

To make the sharing process a little less cumbersome, and for consistency in qualitative data gathered,

CESDM developed templates which are designed to be completed by the individual, their supporters, or

professionals working with them (Appendix G). We are enthusiastic about the benefits of sharing

success stories, and challenges, however, this has been a slower process as we depend on professionals

and family supporters to find the time to write up the stories. We also offer to gather the stories via phone

conversations, and will continue to collect and feature stories. Completed stories continue to be compiled

by CESDM and, with appropriate permissions, may be shared via Facebook and other platforms at a later

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date.

Some of the stories we have gathered powerfully demonstrate the impact of supported decision making

and the benefits of self-determination and we are pleased to share them here. Though we have permission

from the individuals to share their stories, we have changed names and attempted to remove all

identifying information for the purposes of this report.

I'm An Adult. I Want To Be Able To Make My Own Choices

Betty lives with her husband in an independent housing arrangement, and receives supportive services

from a personal care attendant and independent living skills services to help her manage her mental health

symptoms. Just under ten years ago, when she was struggling and suicidal, along with many

hospitalizations, she received a guardian. At first, this was very helpful to her, but as time went on, she

started noticing that "people were controlling me", and her relationship with her family, who was also her

guardian, began to suffer as their desire to protect her conflicted with the strengths she was gaining as she

got older and more interested in autonomy, and enjoying the simple pleasures of being able to access her

own money. For example, as happens to most people under guardianship, her money was controlled by

others, out of a well-intended plan of protecting her from loss and exploitation. She became increasingly

frustrated, and even stopped speaking to her family/guardian after too many instances of them getting to

approve not only how much she spent at the grocery store but also, what she purchased. This was not

easy for her family, who were also pained by the toll this took on their relationship, and a successor,

professional guardian was appointed. But as an adult, married woman, Betty realized that this was not a

life she wanted to live anymore. Eventually the successor guardian also indicated that they no longer

wanted to serve in this capacity due to the conflict, and advised Betty to find a new guardian. Betty's

case manager consulted CESDM for advice and the discussion resulted in a successful petition to have the

guardianship terminated. 1

Though no one objected to the termination petition, and Betty's family/former guardian attended the

hearing in support of the termination, it hasn't necessarily been an easy adjustment for her. In reflecting

on how it felt to no longer have a guardian, Betty stated, "In the beginning, I wasn't sure. It didn't kick in

1 Minnesota law does not require proof that a person has regained capacity in order to terminate a guardianship, but rather, the petitioner must prove that the person "no longer needs the assistance or protection of a guardian" MN Stat. 524.5-317. However, there remains much misunderstanding on this topic; many people including legal professionals use terminology such as "restoration to capacity" which erroneously infers that a person must prove they no longer have a disability which impacts their decision making in order to have a guardianship terminated, an impossible standard for many to meet, and thus, keeps guardianship termination completely out of reach.

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right away .. .I haven't felt different. Sometimes I need to be reminded that I'm my own guardian and can

make the decision. That's new to me .... Having to repeatedly tell people 'I'm my own Guardian,' is when

it started to feel real." Of interest, even after the guardianship has been terminated, the burden of proof

still falls on Betty to prove to others that she can legally make her own decisions: she recently had to

show her guardianship termination papers to medical providers for a recent surgery. It will be a truly

liberating day when Betty no longer has to prove she is capacitated because others start with the

assumption that she is, rather than that she is not capacitated. Betty is insightful about her decision

making, and turns to her family, case manager, her ILS worker and PCA, and the owners of the service

company when she wants extra support in making decisions. Getting help is not as easy as it should be:

"[it is frustrating] if people tell me they can't help me because its not their job" as she gets passed off

from person to person or having to call multiple places/people to find help. Her recommendation to

others for what she needs? "Communication: walk me through what you are doing so that I can learn and

maybe use that next time."

I Want to Date Tom!

Lori has had a series of guardians since she was first put under guardianship some twenty years ago after

some of her "high risk" decisions landed her in a group home and with a guardian in place to protect her,

due to her intellectual/developmental disability. Lori has been fortunate in finding successor guardians,

usually former staff members of the group home or community support services who are willing to help

her due to her kind, friendly nature, she no longer feels that she needs a guardian. Her case manager is

helping her through the guardianship termination process. Though she has always liked her guardians, it

wasn't easy having them cycle through, having to get to know a new one each time, and Lori still felt the

constraints of the protectiveness that guardianship brought her. For example, when she met Tom at work,

she felt an instant connection and the two began relationship. However, her team at the time talked to

Tom, out of a well-intended desire to protect her from being hurt as she had been a decade ago, resulting

in him being "scared off' and Lori was prevented from talking to, or even waving at, him. But that didn't

change the couple's feelings for one another, and from the time Lori met her new case manager (CM) a

few years ago, she started every meeting with "I want to date Tom." The case manager took this

2 While many self-advocates identify with the phrase "I am my own guardian" and should be encouraged to use language of their choice, CESDM takes the position that this phrase sets up and maintains that having a guardian is the normative status for people with disabilities, implying a standard, or a binary condition of having a guardian or being one's own guardian. Rather, we encourage families and professionals to find other means of expressing that a person retains their civil right of autonomy and self-determination, the legal status of being able to make their own decisions.

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seriously and dug in to find out the rationale, as well as to sort out just how much danger there was in the

situation. Patiently going back and forth between the guardian, providers, Lori, and even Tom and his

family/support team, the CM learned the history and the intentions, and got all the parties together to talk

about other ways to approach this situation, ways that honored Lori's humanity, dignity of risk, and also

considered the concerns of Lori's team. Now, Lori has an identified team of supporters who can, and

already have, help her navigate through important decisions, and even cleaning up mistakes: her case

manager, her ILS worker, the worker's employer agency who provides additional, after-hours support, her

case manager, her family, and Tom and his family.

Some of Lori's frustrations in having a guardian, in addition to the initial barriers to relationships of her

choice have to do with how staff treat her as a person with a disability ("bossing" her around, telling her

what to do, coming into her room without knocking and sitting in her desk chair) as well as accessing

money. For example, she was allowed only $5 in her wallet at a time. It felt "not good" to have to go ask

staff for more money just to go grocery shopping. Some things that are important to Lori in decision

making and getting help are "to be believed [when report that] something happened". It's important to

Lori to be able to help others, and she's enjoying the freedom of being able to buy a grill with her

boyfriend, and some meat to barbeque on it!

Lori's guardianship is being terminated in favor of utilizing supported decision making, which her CM

says they all have been doing for quite some time without labeling it as such. It is interesting to note that,

while her current guardian is supportive of the termination, and also would have been willing to remain

serving as the guardian, she is not willing to be named as the Supporter in a supported decision making

agreement. Lori states, "I like making decisions" but also, "I'm going to miss my guardian." Lori has

also gained many skills and maturity since she was first placed under guardianship, having moved from

group home living, to board and care, and now she lives with Tom in his home; they are getting married

in the Fall of 2019 and are planning their honeymoon trip to Lake Superior.

It Is A Very Safe Way To Ensure That Someone Has The Resources They Need ... Without Taking

Away Their Rights

Max and his mom Mary make a great team: he can make decisions for himself, but as a 19 year old living

with autism and other conditions, he doesn't feel comfortable doing so without his mother or other

members of his team being involved. Because of his cognitive immaturity and naivete medical, mental

health and school-based professionals have recommended guardianship for Max. After consulting with

an attorney and CESDM, Max's mother was convinced that SOM is the right tool for Max; he completed 14

CESDM 2019

both an HCD and a Supported Decision Making Agreement. "It feels much more comfortable knowing

that we have a written plan that has been discussed with a professional third-party who did a great job

facilitating what could have been a tough discussion. I know more about what Max wants and can

provide support in the way that he wants at this point. We've done the paperwork that will allow medical

professionals and others to help me support Max in the way that he wants .. .It is a very safe way to ensure

that someone has the resources they need to help with decision making without taking away their rights

to ultimately make decisions on their own. It is a great safety net for those [for whom] guardianship

would not make sense," according to Mary. She also has advice for others who are concerned about

ensuring the person's voice is heard: "I don't think it would work without the neutral third party

professional that can facilitate the conversation and ensure that they agreement ultimately reflects what

the person whose decisions are being supported really wants."

It's Not About The Popcorn

Zach's mom, Wanda, was feeling pressure to obtain guardianship for him as he is now a young adult with

autism. Though he lives with his mother, others are concerned about the need for an official decision

maker to protect him and ensure both of his parents would be able to remain in his life. Wanda was very

excited to hear about supported decision making, and immediately recognized that this was what she, his

case manager, and the special education professionals were already doing as they supported his decisions;

they supplemented these relationships by helping Zach to complete a Health Care Directive (HCD). Zach

is pleased: Zach states: "I don't want people making decisions for me, I want to make my own."

Unfortunately, sometimes Zach and Wanda still run into roadblocks; sometimes medical professionals

still insist he needs a guardian to provide consent, even when presented with the HCD. As for Zach? He

is doing a great job advocating for himself and feels comfortable going to his supporters when he does

need help. Recently, he demonstrated his problem solving skills when he went to the movies with his

refillable bucket of popcorn. When he briefly left it unattended and it was stolen, he went to the manager

to report the theft. When he was not believed, Zach continued to advocate for himself, suggesting they

review the security camera footage, revealing the theft and receiving a new bucket: a proud and defining

moment for him. Wanda is equally proud and engaged: "We are all working to help Zach with his

independence. We believe in him and give him opportunities to try new skills. It is truly nice to see how

Zach has grown and that he is able to apply what we have taught him to be successful out in the

community."

When I Was 19 I Was Dumb And Immature. I'm More Wise Now.

Charlie found himself on the wrong side of the law as a young man, which led to the appointment of a

15 CESDM 2019

guardian, a family member, and placement in a group home. However, the guardian's use of powers led

to a very constricting life for Charlie, including limiting access to other family members, friends of his

choosing, not allowing him to vote, and denying opportunities for independence in general. Now in his late thirties, Charlie recognizes that he made a lot of mistakes when he was younger, but was ready to

have his guardianship terminated. With the support of his case manager, Arc Minnesota advocate, group

home staff and his court appointed attorney, the guardianship was terminated, even over the objections of

his guardian. Enjoying both the freedom that comes with not having a guardian as well as a team of

people he can turn to for support, Charlie lists so many ways his life has changed, stating it feels

awesome: "I can now buy clothes when I need them, I bought a car and drive now, I moved out of the

group home, I rent a house by myself, I decorate it for Christmas and Halloween, outside and inside .. .I

can talk to people on my own without constant monitoring." Charlie also left the sheltered workshop

arena and has two part-time jobs in the private sector. He encourages others who have a guardian but

want to be more independent: "Go for it. It felt like weight was lifted off my shoulders. I think for myself

and have/choose friends without constant monitoring."

She Was Absolutely Lit From Within - Glowing!

These are the powerful words of the attorney as Eliza and her family left the courtroom with her

guardianship having been terminated. Eliza has had a guardian since she turned 18 years old when her

family was encouraged to take this path under an erroneous belief that it was necessary in order for Eliza

to receive services: now in her fifties, Eliza lives independently in one side of a twin home and her sibling

and sibling's spouse live on the other side. Her large, loving family supports Eliza in her independence

and safety; Eliza is able to strongly express her preferences, including disagreeing with her family

guardians in matters that are important to her. Though the Court readily granted the petition for

termination, the process was unsettling for Eliza, who was quite fearful that she'd be asked difficult

questions; even here though, she knew what she needed, and asked that her sibling go with her into the

private conference room to meet with her court-appointed attorney. The petition for termination included

a proposed Power of Attorney and Health Care Directive, which Eliza signed as soon as the hearing

concluded. According to the attorney, "This case seemed tailor-made for termination in my estimation

because of the individual's ability to express her own preferences, and the fact that she has a large and

incredibly loving and supportive family."

Recruiting Self-Advocates

As Minnesota develops best practices, policies and laws surrounding changing systems which favor

guardianship, ensuring people with lived experience are substantially involved in the conversation is an 16

CESDM 2019

important goal of CESDM. During this project's listening sessions, CESDM had intended to identify and

recruit self-advocates to travel with CESDM to participate in the educational sessions for professionals,

families, and other self-advocates, so that these audiences could see first-hand how individuals with

disabilities are using SOM. One such individual, Michael. L., had been under guardianship for all of his

adult life until he and his parents/guardians decided he was ready to terminate the guardianship.

CESDM's attorney and students from the University of St. Thomas Law School became involved as his

court appointed attorney in the termination process. Mr. L. is enjoying his new life, making his own

decisions, and is an aspiring professional motivational speaker. He has addressed professional audiences

at various professional conferences in Minnesota, including the WINGS MN annual summit two years in

a row. Through this grant, he was also able to travel to western Minnesota with the Project Director and

shared his story with, and provide inspiration to, the 108 professionals in attendance. With the support of

this grant, the 2019 WINGS MN summit hosted both Mr. L. and another individual, Ms. K., who is

practicing supported decision making with her professional guardian ( of interest, the guardian believes

that Ms. K. may no longer need the protection of the guardianship; they plan to work toward less

restrictive approaches to supporting Ms. K.)

Professionals enjoyed and expressed benefitting from hearing first-person accounts of individuals

impacted by supported decision making and guardianship in these venues. Feedback included:

Michael was inspirational II [want to] hear more from Michael or people with similar stories II [want]

more people speaking about their experiences Michael is/was amazing! A very effective speaker II

Loved Michael. Nice to see a real life example II Keep Michael involved in the training. I really enjoyed

his story II Love first-hand accounts, examples, and people talking in their own field II I especially

enjoyed hearing the personal stories of those who have or have had a guardian II Michael's analogies II

Michael, his story was great and exciting

Lessons Learned, Modifications to Plan and Impact of Modifications

Involving Self-Advocates:

Through the course of the grant period, we realized we would not be able to fulfill the original goal of

substantially involving self-advocates in every step of our planning and grant activities. We

overestimated our ability in this short period of time to meet and enhance relationships with people who

had the right combination of the following factors: a story to tell which would demonstrate how

supported decision making enhanced their self-determination and avoided guardianship; professional or

family supporters taking the time to share the story with CESDM or otherwise connect us with the

individual; enough time having passed after a guardianship termination; and the person's comfort level in

17 CESDM 2019

telling their story in a public forum, be it an in-person or virtual educational session. Further, our

intention to bring self-advocates with us for active participation in educational and listening sessions

considered travel costs, but not logistics, such as whether the individual would also need physical or

emotional support from their professional or informal support teams.

That said, the contributions of the thirty-six attendees to Listening Sessions significantly assisted CESDM

team members to better understand their perspectives and hear it first-hand. We are pleased and

enthusiastic to observe the excitement generated in each Listening Session when we thanked them for

their participation and informed them that their willingness and bravery in sharing has the potential to

inform future law and policy in Minnesota. Participants appeared rightfully proud for making this

contribution.

We were pleased to have Mr. L. 's enthusiastic willingness to travel and present with us, however, he has

goals beyond just teaching about supported decision making and was excited to use the two speaking

opportunities to meet our goal of having audiences hear from people with lived experience, but also and

with more emphasis, to further his own desired career as a motivational speaker (which of course in and

of itself is a beneficial and motivational message, but served as an example of how we cannot and would

not want to, control the message of the self-advocate speaker).

Additional complications are logistics, and managing our expectations, i.e., not being able to expect the

level of responsibility to commitments in a self-advocate that we would expect of a professional

presenter, as arose with the WINGS MN 5 Annual Summit. The audience benefitted from two

individuals with lived experience sharing their stories and perspectives, due to significant buy-in and

cooperation from WINGS MN members who took and embraced the idea of self-advocates as presenters:

recruiting and supporting two speakers: Ms. G, who works effectively with her guardian who embraces

the philosophies of supportive decision making in the guardianship relationship, and Mr. C., who had

successfully had his guardianship terminated and benefits from his team of supporters in living his best

life. There was a fair amount of coordination between the proposed speakers, their support teams, travel

expenses and coordination, and the summit planning team. One day before the Summit, Mr C. changed

his mind, informing all that he was no longer interested in being a speaker, due to stage fright. Travel

accommodations were hurriedly cancelled, and Summit planners scrambled to recruit Mr. L. to step into

Mr. C's place.

18 CESDM 2019

So, although we had some involvement of self-advocates in our project, but not to the degree we had

hoped, we utilized the input we did receive from Listening Sessions to inform professional and family

audiences by integrating Listening Session contributions into our SDM education sessions (see Slides 74

& 75, Appendix Band Slides 65 & 66, Appendix C).

Another modification we made in response to our inability to adequately meet our goal of in-person and

virtual contributions of self-advocates for educational sessions was a pivot to development of a written

document, CESDM Guide to Supported Decision Making in Minnesota: a Resource for Families and

Other Supporters (Appendix H). This was a fortuitous development, as we have been hearing from

families and professionals who support individuals and their families that they wish for written materials,

including forms and checklists, instructing them on "how to do" supported decision making, to

supplement the formal presentations they received. Additionally, there is a hunger for written educational

materials, even in this era of technological advances, as not all Minnesotans have access to reliable

internet service, or access to computers and printers to access on-line resources, or ability to easily travel

to in-person presentations.

Listening Sessions

In addition to participant engagement, perhaps the most obvious measure of successful listening sessions

is number of attendees. By far our most well-attended session was the one in which our proposal to hold

a Listening Session as a breakout workshop submitted to the planners of the biennial Self Advocates

Conference (hosted by Advocating Change Now, a self-advocacy membership organization in Minnesota)

was accepted. Another successful session was championed by a northern Minnesota county (St. Louis

County), led by an individual employee who coordinated two different presentations a one for

professionals, and one for families and self-advocates - in two different locations in a very large

geographical county. This person, who formally was a direct service provider, a case manager, and now a

program manager, worked to widely promote the events, with particular attention paid to recruitment of

self-advocates.

Presentation Modifications

As mentioned above, our professional and family education presentations content was modified to

incorporate contributions of self-advocates/ people with lived experience. We also found it beneficial to

pay particular attention to how we discussed supported decision making within the context of

guardianship to ensure audiences would hear the message we intended to impart, addressing fears and

avoiding resentments and misperceptions about our views of guardianship and the difficult decisions

19 CESDM 2019

families make with regard to seeking guardianship. We found that audiences were more receptive to the

message when we first laid out the unintended negative consequences of guardianship, acknowledgement

of fears and worries about vulnerabilities balanced with the benefits of self-determination, and reassured

that guardianship is still an available tool, and sometimes, the best tool in a given situation (Appendices B

&C).

Plans for Continuation

Since 1896, Volunteers of America - Minnesota/ Wisconsin (VOA-MN/WI) has continually evolved to

support the community's most underestimated individuals. It is striving to create a new model for human

services that delivers solutions that address a spectrum of intersecting needs-from health to housing to

employment to education-while continually investing in its capacity to innovate and improve. VOA­

MN/WI is known for serving high-needs individuals, anchoring its work in evidence-based practice and

trauma-informed care. VOA-MN/WI boldly looks towards the future and challenges inequities while

generating powerful results that impact the lives of 24,000 people annually. VOA-MN/WI's capacity to

promote long-term positive impact resides in its deep awareness of the needs of the population it serves.

VOA-MN/WI understands the role of social determinants of health and the inter-connectedness of

poverty, trauma, health, education, and housing. At the core of its work is the belief that when people

reach their full potential, everyone benefits. VOA-MN/WI takes a broad view of community needs,

offering a holistic and integrated approach to its work. VOA-MN/WI continually seeks to offer creative

and disruptive solutions in pursuit of its mission, to help people gain self-reliance, dignity and hope.

VOA-MN/WI's Center for Excellence in Supported Decision Making program has a 45-year history of

providing services to vulnerable adults. CESDM is known, respected, and sought after in the professional

community for its intensive phone consultation to family and professional caregivers, objective in-person

assessments in the Twin Cities Metropolitan Region, and professional education. Due to the existing

structure and member dedication of WINGS MN and the stability of CESDM within VOA MN/WI, this

work will continue after the grant period ends.

Suggestions for Replication

CESDM envisions that projects seeking outcomes achieved in this project could be fairly easily and

inexpensively replicated through adaptations to CESDM'S grant products, in consideration of our lessons

learned and modifications activities, incorporated to another project's particular geographical, regional ,

resources, laws, and other specific factors.

20 CESDM 2019

Some specific considerations for replication based on our lessons learned:

• Because the concept of Listening Sessions was relatively new in many areas of Minnesota, we found

that leveraging regional desires for professional CEU sessions to develop partnerships with host

organizations is effective way to gain buy-in for Listening Sessions. However, we also found that

the most successful Listening Sessions in terms of number of attendees occurred when there was an

enthusiastic champion at the location of the Session to publicize the event and encourage attendance

and additional recruitment of self-advocates by other professionals.

• Similarly, we found that the support and presence of professional or family or peer supporters was

critical to complement Listening Session facilitators' ability to truly draw out input from self­

advocates. Often, attendees presented as shy, sometimes reluctant to speak, undersold or forgot their

stories: skilled supporters assisted individuals via encouragement and leading questions or

restatements of facilitators' questions without speaking for the person, and rather encouraging the

person to speak for themselves, with cueing and encouragement.

• We also recommend that Listening Sessions have a facilitator and at least one other assistant to serve

as scribe; consider also involvement of support people who are skilled at helping draw out the

participation of the self-advocates through cueing, reminding, clarifying, restating (but not speaking

for) participants. These additional assistant(s) also serve an important function in the event of a

behavioral outburst, medical event, or other unexpected event; during one of our sessions, a

participant experienced a minor seizure which was identified by another self-advocate, and attended

to by the host agency's staff who was serving as our scribe.

Appendices: • Appendix A: MSSA Regional Map of Minnesota • Appendix B: Supported Decision Making: An Emerging, And Ethical, Alternative to

Guardianship PowerPoint slides • Appendix C: Rethinking Guardianship for Young Adults with Disabilities PowerPoint slides • Appendix D: Listening Session Agenda template • Appendix E: Listening Session Flier template • Appendix F: Listening Sessions Surnrnary of Answers • Appendix G: Individual Stories Interview Forms: Guardianship Termination and SDM Instead of

Guardianship

CESDM Guide to Supported Decision Making in Minnesota: A Resource for Families and Other Supporters (Separate Document)

21 CESDM 2019

I APPENDIX A

Minnesota Social Service Association

Regions

0

5 3

APPENDIX B 8/29/2019

SUPPORTED DECISION MAKING· AN EMERGING & ETHICAL

ALTERNATIVE TO GUARDIANSHIP

20 19 Anita L Raymond. LISW CMC

Objectives Explore the tension guardianship presents between helpful tool and infringement on civil nights.

Understand the decision to seek guardianship from ethical, legal, and practical perspectives.

List Supported Decision Making legislation passed in United States and Canada.

Understand how the person-centered approach of SDM protects individual rights while still protecting those who are vulnerable to maltreatment.

Center for Excellence in Supported Decision Making

[his projec t was supported by the National Ke source enter for Supported Decision- Making and the S Administration for 'omounity Living. [his project was supported in part by grant number 90D4000 10 1-00 from the DUS Administration for (Community Laving, Department of Health and Human Services, Washington DC 20201 Grantees undertaking projects under government sponsorship are emcorgged to express freely their findings and conclusions. Points of view or Op0tons do not, therefore, nece ssa rily represent official dmunistraton for Community Living policy

1 2 3

Center for Excellence in Supported Decision Making

A Program of VOA MN, funded by DHHS Administra tion for Community Living

WINGS

Rosaro t, '} n")

Guardianship & Conservatorship: what is rt, how it works, risks and benefits

Supported Decision Making: introduction and basics

Tools and Resources

Before Accident • Job • Friends • Bike riding to work

Framing the Issue Jenny Hatch

After Accident " Parents as guardians ·Group home, outside of community "Loss of job "Loss of sense of purpose "Isolation, depression "Loss of self­ determination

4 5

"Hattie

• Placed under G/ by hospital when admitted after stroke and refusal to accep t neces sary discha rge pla r

• Mon ths later , stabilized , regains much of cognitive ability

Framing the Issue Ag rees to necessi ty of help, wants to receive at home instead of LTC

"Guardian/Conserva tor refuses , feel s safer in LTC and too expensiv e at home

" Family advocating for her, gets upse t at staff, barred from building

• Hattie wants to terminate G/Cshi p but feel s thwarted by G/C, intimated by Court

·Staff say have to aski guardian every tire Hattie wants to do sore@ting

Group Exercise: Introductions

Three nouns to describe yourself

Three choices you made today (or this week}

Two decisions you make that others might say are "poor"

6

How do we describe the people

k. a 7 8 9

VOAMN 2019 All Rights Reserved 1

APPENDIX B 8/29/2019

Guardianship & Conservatorship: What is This?

• Court appointed substitute or surrogate decision-maker

• Voluntary or involuntary (most common)

e Guardianship/Guardian/Ward = Personal and Care Dec isions

e Conservators hip/Conservator Protected Person = Money and Assets

Guardianship is:

an excellent tool....when it's necessary sometimes the only way to protect a vulnerable person sometimes the only way to meet the person's own goals to be utilized only in extreme circumstances when there is no other way to protect person/meet goals: last resort

Is Guardianship the Best Solution?

e An ethical issue: removing constitutional right to self-determination / autonomy: Human Rights

• Time Consuming: due process protections to ensure justifiable intrusion by government in lives of citizens

• Expensive: to incapacitated person, family, society

10 11 12

Is Guardianship the Best Solution? «era

• Potentially emotionally devastating to person and family

• May not even solve identified problem

• The problem of scarce resources

e Potential loss: dignity of risk

The Paradox of Guardianship Valuable too! to

protect Vulnerable Adult?

Or Heavy-handed tool

which strips constitutional night to self-determination?

Deciding to Seek Guardianship

✓ An Ethical Decision

✓ A Practical Decision

A Legal Decision

13 14 15

Criteria for Legal Intervention: Guardianship

o When a person is incapacitated: impaired & lacks sufficient understanding/capacity to make or communicate responsible personal decisions, (MN Stat 525 5-102 Subd 6) and

o Has behavioral deficits which evidence inability to meet personal needs for medical care, nutrition. clothing, shelter, safety even with use of appropriate technological assistance and

o No less restrictive means will meet their needs. including use of appropriate technological assistance (MN Stat 524 4-310 (a)X2))

❖ (ANO Guardianship appoi ntment will actually address the identified problem)

Legal Intervention: Conservatorship

(MN Stat. 524.5-409 Subd. 1(1)(2)#3)

o Person is unable to manage property & business affairs b/c of inability to receive and evaluate information or make decisions, even with use of appropriate technological assistance;

o Has property which will be wasted or dissipated unless management is provided or

o Money is needed for support, care, education, health. and welfare of the person or individuals entitled to the person's support and

o Needs cannot be met by less restrictive means. including use of technological assistance

Can Guardianship Make Things Worse?

Risk of "mission creep" Well-intended, worried guardian Fears of liability Power and control Providers (and person) turn to guardian for all decisions

Guardian decides well beyond scope granted by Court

16 17 18

VOAMN 2019 All Rights Reserved 2

APPENDIX B 8/29/2019

Can Guardianship Make Things Worse?

Loss of sense of power and self-determination = potential for

» increased resistance

reduced cooperation

decreased sense of self-worth

Can Guardianship Make Things Worse?

Research: guardianship, self-determination, & maltreatment s "Older adults with more self-determination have

improved psychological health including better adjustment to increased care needs" O'Conner & Vallerand, Canadian Journal on Aging, 1994

e "Women with intellectual disabilities exerising more self-determination are less likely to be abused." Khemka, Hickson, and Reynolds, 2005

Research: Protection and Self-Determination

Labeling person 'incompetent" impacts: how others view person self-esteem and self concept: "inhibit[s] performance, diminish[es] motivation, and depress[es] mood"

Winick, B.J. (1995)

19 20 21

Let's Chat Tell us a choice you made today (or this weekend)

How would it feel if someone else with more experience made that

decision for you?

22

Can Guardianship Make Things Worse?

Medical Orders vs. Quality of Life (medications, special diets, smoking,

"% Om»

Can Guardianship Make Things Worse? a's

3,5J 2: Z) o .# a6 23

Let's Chat Tell us about decisions you make that others might say are "poor" To deny the right to make

choices in an effort to protect the person with disabilities from risk is to diminish their human dignity.

= Robert Perske

24

Dignity of Risk .0ur most cruel failure in how we treat the sick

and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one's story is essential to sustaining meaning in life... we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone's lives.'

25 26 27

VOAMN 2019 All Rights Reserved 3

APPENDIX B 8/29/2019

Guardianship and Human Rights

Patient Self-Determination Act, ADA. Older American's Act, Olmstead Act/Decision/Plan/Jensen Settlement

recognize person's right to self­ determination, entitlement to receive support to accommodate disabilities. and maximize independence

United Nations Convention on the Rights of Persons with

Disabilities General Principles:

(3) Respect for inherent dignity, individual autonomy including the freedom to make one's own choices..

United Nations Convention on the Rights of Persons with

Disabilities Persons with disabilities

Have the right to recognition everywhere as persons before the law Enjoy legal capacity on equal basis with others in all aspects of life [must] Receive access to support needed in exercising legal capacity

w

28 29 30

Summary: Impact of Guardianship INTERNAL

Loss of Setf Determination • Increased resistance • Decreased cooperation ·Decreased sense self­ worth

• Lowered performance • Reduced motivation '2gg359% cecressea • Increased risk of abuse • Learned helplessness

EXTERNAL • County budget impact • Negative view of incompetent person

• Court reporting burdens • Mission Creep /"2 ,'2,Proo ·cove ·Qver-protection = Decreased quality of life

&SC:. 5:.2 staffing needs. decreased choices in care settings

31

We need a culture change, to move away from current practices of (too often) defaulting to guardianship to

systems that value avoiding unnecessary guardianship ..2,

32

Just because a person cannot make

decisions independently, does that mean person is incapacitated? Just because person is

"incapacitated", does that mean person

needs legal decision maker?

33

Current Practice

Considering Capacity New Approach

» Person can't make decisions / arrange for cane and housi ng independently, equals

» Inca pacity. the refore » Need s legal decisio n

maker » Guardianship sought,

person loses nghts, expene noes unintended conseq uences

» Person can't make decisio ns /arrange for care and housi ng independently . equa ls

» Need s help to make decisions

r Accommodations by pro viders and systems, which is Supported Decision

Making

Supported Decision Making: A Paradigm Shift

"A way people can make own decisions, stay in charge of their lives while receiving help they need to do so.

Person making decisions with support of others vs. others making decisions for the person: ...cutting through the jargon to understand what's going on and what you need to do..."

=Jonathan Martinis, Esq.

34 35 36

VOAMN 2019 All Rights Reserved 4

APPENDIX B 8/29/2019

Supported Decision Making: Definition

"a recognized alternative to guardianship where people with disabilities use trusted friends, family members, and professionals to help them understand the situations and choices they face, so they may make their own decisions without the 'need' for a guardian"

(Blanck & Martinis, 2015)

Supported Decision Making: Definition

"[JJust a fancy way of describing how we all make choices. We all need help making decisions, every single day.

~ Jonathan Martinis, Esq. (Blanck & Martinis, 2015) (I

Supported Decision Making: "[J]ust a fancy way of descrihina how we all make

"I don't need a 'guardian. I just need' C • a little help!"

Jenny Hatch

37 38 39

Supported Decision Making

A legal tool in Texas. Delaware, Wisconsin, D.C., Missouri, Alaska, British Columbia, Australia, other jurisdictions...statute mentions: New Mexico, Maine, Maryland, Kansas..

A philosophical approach: a paradigm, not a process

Another less restrictive alternative on spectrum of decision making

Guardianship & SDM Position or Supporting Statements

Re

aa aidd

mm How Does Supported Decision

Making Work? Understand we all have the right to make choices

Needing help # needing guardianship

Work with person to Identify team of "supporters" for current or future

• a#ss»

40 41

How Can I Use SDM?

Confront own assumptions about: Capacity & Diagnosis Need for legal decision maker Ability of family (however imperfect) to play significant and positive role

Recognize risk factors re: family, but sort out reality vs. perception Confront own and other professionals' lack of comfort with ambiguity

SW Advocacy Required

Confront your own risk tolerance May need to confront other professionals Build trust; joining Advocate for decisions person can make Accommodate for disabilities Give information about rights Help person understand "needs" as well as "wants Facilitate realistic goal setting (Insight Proxy) Identify and link to formal and informal resources and supporters

42

How Can I Use SDM?

Changing our approach and assumptions about vulnerability and disability

From "telling" to "coaching

Is neither abandoning person to their choices nor is it complete focus on total risk elimination

In other words:

43 44 45

VOAMN 2019 All Rights Reserved 5

APPENDIX B 8/29/2019

Finding the Balance: Person Centered Practices

Self-Determination Autonomy Safety

46

What Does SDM Look Like?

Example: deciding where to live person makes own decisions without consulting friends, family, professionals: not SDM someone else makes all living decisions for person without considering preferences I opinions: not SDM anything else- visiting possible residences together, making pro/con lists; discussing direct service needs: is SDM

(Na tiona l Resource Center on SDM Brainstorm ing Guide)

49

What Does SDM Look Like? Example: managing money =no one talks about money with the person, & person does whatever wants: not SDM

=someone manages all the person's money. gives no choices about how it's spent: not SDM

=anything else -opening joint bank account, making a budget together. having a fiduciary who discusses how to spend money: is SDM

(Na tional Resource Center on SDM Brainstorming Guide)

What Does SDM Look Like? Example: making health care decisions

person makes own decisions without talking to anyone else: not SOM someone else makes all medical decisions for person without discussing preferences/opinions: not SOM anything else - attending medical appts. together, explains healthcare choices in plain language. shares access to medical records: is SDM

(Na tiona l Resource Center on SDM Brainstorm ing Guide )

47 48

What Guardianship Means To

/'t.-.,1n!c·d to tJas caily 1 ._." ori '17Y own

so 51

? Is there any intervention ? that guarantees complete protection from maltreatment, • '} 7

a

FAQ ABOUT SOM

What indicators might suggest to a case manager that SOM may be appropriate?

Person Likely Not a Candidate for SOM

Does not recognize need for help/refuses Resistiveness cannot be overcome Person sabotages others' efforts (and this can't be overcome) No trusted supporters Supporters not able to act per wishes/best interests (and can't be "trained")

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APPENDIX 8 8/29/2019

Person May Be a Candidate for SOM

Recognizes needs help

Has trusted others to form team

Cooperative and/or open to trusted others' ideas

Ideally, able to also complete HCD/POA

FAQ ABOUT SOM

In SOM, does the person always make the final decision?

Supported Decision Making is about providing support, information, coaching to enable the person to make the best decision for that person

In other words....

55 56 57

Person Centered Service Provision important TO the Pron · Rotor.hp " Hobbes Haertel choc low spend y Peers prorl

eapr ear clot@hug ml.p ate

important FOR the Person " Health • Safety @licy/law corplance ·Et

58

SOM: An Example

59

FAQ ABOUT SOM

Is there a formal process to use in making decisions utilizing SDM?

60

Formal Processes? Not Officially. But.

Person-centered interventions / philosophy informs process

As part of HCD, language making it effective now regardless of "capacity

Sample agreements available

Requires involving the person!

FAQ ABOUT SOM

How formal is the SOM relationship: is it recognized by others?

SOM Relationship Recognized by Others?

To be determined ..

The more we use, talk about, produce, we will "normalize" with providers as familiarity increases

If part of HCD or POA, providers more likely to honor

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APPENDIX 8 8/29/2019

SOM Relationship Recognized by Others?

Advocacy required...

Patient Self-Determination Act, ADA, Older American's Act, Olmstead Act

recognize person's right to self­ determination, entitlement to receive support to accommodate disabilities, and maximize independence

But What About....? Doctors won't talk to family without guardianship?

Professional Standards & Ethics

Health Care Directive

Consent for Release of Information

Communication

av»

But What About....? Person may be taken advantage of?

Power Of Attorney

Representative Payee

Banking Tools

Communication

w

64 65 66

But What About.... ? Person "can't" make own medical / housing I other decisions?

POA I HCD I Rep Payee

Authorized Rep

Supported Decision Making & Communication

67

But What About....? Person may make a bad decision?

What happens when people without disabilities make bad decisions?

Leaming from mistakes

Communication/ Community Supports

Skill building

Listening Sessions Whe n you think about getting he lp making decisio ns, what would you like to change?

• Making decisions / fee/mg ltlce I made good ones Feeling more confident /strong to make decision$ Overcoming fear s

• Getting help working through emotion • Help getting the words out Overcoming beng nervous

68 69

Listening Sessions Whe n you think about getting help making decisions, what would you hike to change?

Ensuring choices are honored People know me better Malung good decision$ lave more people to be able to talk to after hours Quicker turn around No fear Need people that know me better, know my values

Risk Taking vs. Safety

MN Stat. 245D addresses choice vs. safety

Provider concerns about liability vs. choice

Bubble wrap vs. learning from mistakes

Protections still exist V AA, Guardianship, OFPs. etc. V

But What About....? Isn't Guardianship required when person is "incapacitated"?

Guardianship is NOT required by MN law: • to receive County Servic es • to sign IEP when person turns 18

Residential and Care Facilities cannot mandate appointment of Guardian as condition of admission

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APPENDIX B 8/29/2019

SOM TOOLS

PRACTICAL Tool

Brainstorming Guide

How to Make an SOM Agreement

Stoplight Tool

SOM TOOLS

PRACTICAL Tool

Brainstorming Guide

How to Make an SOM Agreement

Stoplight Tool

PRACTICAL Toot for Lawyers: op m oppoet@mg 0co alp

a'8 73 74

PRACTICAL

P- Presume R- Reason A- Ask C- Community T-= Team

I - Identify C- Challenges A- Appoint

L- Limit

76

lg ® Ng Jog. a» e m le al lie lg= e »

---- 4 goo, ms

75

When we identify why it is being requested/what the areas of vulnerability are, we can get to work

sorting out least restrictive responses

77 78

Look for steps to reverse the cond@ion or p0spore a decision until the ond@on mproves

A#t:cont~n1dv1HUJ!ofot1Nted cou-mpo,_.,.or IOONrvWOMa,1111 Note: peerute on@ors such as e Medical cndrtioms. inhec tons. dehydration elem pr dental cane, malnutrition, pan

e Sensory def)ts: hear wig or van loss Medication sde effect

ASK Mstiggperig cocer my be caused by temporary or reveille cod#ties. Loo for steps to reverse the ond@ion or p06p0e a decision until the

Let's not engage a (relatively) permanent intervention if the concern is

treatable/temporary/result of professional's bias

(OM,TY. Dermis if concerns am e addressed ypctg the ind@al fmmy or comity resources am malp accommodations Asl what would it tale? to enable the person to male the needed decision/ s]

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e pull®.oft4p. lw s em pure lb bgen r/heel

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® r tu dp e twp wp ri I

79 80 81

VOAMN 2019 All Rights Reserved 9

APPENDIX B 8/29/2019

Supporting the person's inability to be independent and need for help by

arranging for community services and engaging informal supports

[EAM. Ask the person whether he or she already has developed a team to help make decisions .

e Does the person have fens. family members. oe Orv tens amd Notes . protes sans waable to help

s as the person appor ted a surrogate te help male et mars I

I I W«» -- I

[DENTI #FY abi lities . iden tify areas of strengths and imitations in decision-making if the person does not have an existing tear and has difficulty with specific types of decisions.

hpldgfeg Np/erg

Wlfptdw®grey wif@®

w

82 83 84

(CHALLENGES. Screen for and address any potential chal lenges presen ted by the identified supports and supporters.

Se reen for amy of the folllowwg challenges Possible challenges to identified spports e Eligibility, cost, trng or location s @isl to puble benefits Possible oens abut supporters

@sl of undue muenee Rs of abuse , mepect, exploitation (report

suspet ted abuse to agult protective serve es } Laa l of unders tanding of person 's med al/mental health need Laa l of stability, or coprte mutations co support ers

s Dispu tes with farty mmembers Y·-···-··

APPOtHT lepi support« or surropte consbt.nt with ,-,son's I vhues and preferences.

(Could any f those appom@rents meet the meed e pmt under health cate power of at torney oe

e Healthcare ttogat gnden stat@aw e pent under fnnel pwen cf tteney

• Tos te p{ =.7 or normally recopi ed

I y

85 86

LIMIT any necessary guardianship petition and order.

.,,,,...diMl .. ,-dtd 1·~-~= e burnt par danshp t what s absolu tely net@ssary

sue h as e Only spe he proper ty/hinare al dee sons e my prpetty/franc es mniy spee hie personal,/he alth ¢ate decors

only person/e ith cane dee cs State how guau darn will erg.ape an rvole person

Develop proposed pe#sot< er tene plan

Re2a0ss pre alhy fer mdfe atin or restoration

Also, time­ limited G'ships

I

APPOINT legal supporter or surrogate consistent with person's voles and preferences .

Remember: capacity to appoint agent is different than capacity to comprehend complexities of

medical or financial decisions

87

SOM TOOLS

PRACTICAL Tool

Brainstorming Guide

How to Make an SDM Agreement

Stoplight Tool

y

This tool can help people brainstorm ways that they are already using supported decision­ making. and think about new ways supported decision-making could help the person with a disability learn to make her own safe. informed choices."

Quality Trust, 2016

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VOAMN 2019 All Rights Reserved 10

APPENDIX B 8/29/2019

How to use this tool: Go through each area of the individual's life. Brainstorm whether you work together to make choices in this area. You might not yet be using [SOM] in all of these fields. If you think of supports you could start using, write these down [OO. V.»-®­

91

If you are considering {guardianship/: [SOM] can sometimes be formalized into arrangements that prevent the need for [guardianship}. For example, the person with a disability could sign a form to let you access her medical records so you can make health decisions together. ..--»-.

92

If you are planning for the future: this tool can help you think about ways to learn and practice decision­ making. Learning to make good choices is a skill, and people can learn to make better, safer, and more informed choices with practice and support.

93

If a lawyer, doctor, school official, banker, or anyone else_is worried that the person with a disability cannot make her own decisions: this tool can help you explain to the person the ways in which the decisions of the person with a disability are informed and safe.

How does the person...manage his money? » If no one ever talks about money with the

person.. and they do whatever they want, that's not SDM

» If someone takes all the person's money...gives him no choices about how it's spent, that's not SDM either.

» Anything else -opening joint bank account, making a budget together, having an SSI rep payee and then discussing how to spend money-- is supported decision making

94

How we work together to help the person with a disability make healthcare choices:

Additional supports that we might want to start using (examples include : executing a HIPAA authorization to share medical records, attending medical appointments with a supporter, providing complicated health information in simplified plain language. _

95

How we work together to help the person with a disability member manage his/her money

Additional supports that we might want to start using (examples include : appointing a [rep] payee, opening a joint bank account, making and implementing a budget together, taking a money mnanae/Tell fSg@

96

How we work together to help the person...make choices about where he/she lives

Additional supports that we might want to start using (examples include: working with...staff to find housing options, discussing priorities in housing): _

PRACTICAL Tool

SOM TOOLS

Brainstorming Guide

How to Make an SDM Agreement

MO Stoplight Tool

97 98 99

VOAMN 2019 All Rights Reserved 11

APPENDIX B 8/29/2019

2422 $"16 2ML&T 'V'AL ALYS4 TM !

A Gude fr Pede wth sab+!ties American Civil Libbft es Union

100

Table of Content;

? why do this a tneap ?

Thes ats?y lll help you fmink about hew you rale hoc@s. You .an tale alb

what son of help you le an den' lie eu can thin about he® vou ha made aandwhat ut f fen 't le wwn you wer e hong

Sappgr'ted De; con !along rs ter ent for every perr ! Th ctvty welf you thin about what rs mnptaant you

101 102

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e gr anything ea rg let@hew hr le j !pg» tot mew s rared

Thin.l about how hf you male the choice? id you

e tall ab.rt it7 y» ff vu tall wh? e rite down your possible optins

103

All».lg a a 4lg pg3fe #gp± le

104 105

<hogter } hinting stet Sgport

pp Letran nng lety you get help or oppert w mang your hoit es. Everyone gets suppor t n maerg chow e»eve@wdaoy

ire ls of! 221 ae

106 107 108

VOAMN 2019 All Rights Reserved 12

APPENDIX B 8/29/2019

0 e hr tme to the abut «oms

s Ronn@ng yu of abeut yr we ofgrter {an help yy remember

if mo pr?aunt t » Thy a0» off » hu reg fa/is Tog,h aft yr «too #

he Oe ! woes rt

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109 110

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111

112 113 114

pf[ Ip] a see I tlft!Dilll •• , ' I yii IF t 4

Al \ a Ji » F. 7' a' [ ]

SUPPORTED DECISION MAKING AGREEMENT EXAMPLES

SAMPLE: ACLU/Quality Trust

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115 116 117

VOAMN 2019 All Rights Reserved 13

APPENDIX B 8/29/2019

gel ggop [bu Aug# sl 4 le l le@WI Jl@lg3el®le@Jr NW®ll al al l#®e ®Alb l-I J Ip pW is® ®la ga

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gee # #y eg 4l lgp@ le g go

Texas SDMA

Amending MNHCD forms

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118 119 120

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ft_-«·er®» oso a F.. Mrpmemend»pule e et et ae $,s help e comes e r dee e the gt people ar .4 ov h@@wt ppr epg deffer?

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prpcry ef tr Meat ae Arley ! Acme» f6 /H'PAA) I et» rsma a ef ttr alee epporers of a fie met a a ereeal Reprove a deft s te eve trot Ar Te Supporers he t@e oteer de h be pg e JHIP4A e ere me ad eta opes of r at al pet de al oh aetadf me» mg ms mmeal eh w e scene of pert setifale he» ft av de al re av Pe ef I a ale to de de a pea fr ell! Fr gv Spporers ae at tare ams a al rps very one ws gltN »de flate ealt forte a el eds Ne tYN de wwst a health ca e pars ties o get{pt Ag vgel le lute wt I sea» ndoepew rd if le ea fig lute e! ms rans ot dilate heat ft am medal ecat Tau ml pt A llat etfe: log r ppert tree t ff®IN!tit efie!

121

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122 123

VOA MN

RESOURCES

·Legal Services: HCD forms and more

·CESDM & Protective Services: links to articles, G&C FAQ and more

124 125 126

VOAMN 2019 All Rights Reserved 14

APPENDIX B 8/29/2019

RESOURCES American Bar Assoc iation: The PRACTICAL TOOL

National Resource Center on SOM Brainstorming Guide (and SDMA model forms)

How to Make an SDMA

RESOURCES

Missouri Stoplight Tool

RESOURCES

SOM Agreement Examples

127 128

RESOURCES

State Courts-forms and manuals: www.mncourts.gov/Help- Topics/Guardianship­ and-Conservators hip.aspx

Bill of Rights for Wards & Protected Persons www.revisor.mn.gov/statutes/? id=524.5-120

National Resource Center on Supported Decision Making www.supporteddecisionmaking.org

WINGS MN:

RESOURCES

and:

Article 5 of the Uniform Probate Code, Protection of Persons Under Disability and Their Property, 524.5-101- 524.5-903

129

RESOURCES Supported Decision Making in Later Life, by David Godfrey

Supported Decision-Making: What, Why, & How by Morgan Whitlatch

130 131

RESOURCES MN Courts: Guardianship Manual, Forms, Online Training

http://www.mncourts.gov/Help­ Topics/Guardianship-and-Conservators hip aspx

Conservators > Guardiansh ip Tra ,

4,

VIDEO RESOURCES What Guardianship Means to Me https://youtu.be/u6F TL7bYUAw

Missouri Tool https://youtu.be/D_XnGrCi8L4

Michael, St. Thomas School of Law Clinic on wcco https://youtu.be/aciKsoOvqlY

Last Week Tonight with John Oliver https://www. youtube.com/watch?v=nG2pEffL. EJo

132

CESDM Team

Anta Raymond Amanda Mudhon otr ante Kathleen Carlson Pegram Manages 952-945 4177 612-676 6301 95.2 945 41 7% 952 945 4172 aman&a hudson con la@ue athieen ©au for at agemngnd voamn rg 4voamn Ong {voamn org yvoamn. org

133 134 135

VOAMN 2019 All Rights Reserved 15

APPENDIX B 8/29/2019

Center for Excellence in Supported / Decision Making

' Phone Consultation. Advice. I&R » Assessments Surrogate Decision Maker Support Guardian Complaint Consultation Facilitation of SDM & Surrogate Decision

Making Legal Tools (POA, HCD. GIG)

Center for Excellence in Supported Decision Making

GUARDIANSHIP INFORMATION LINE

r, 9s2-94s-4174

6V 4.344-333-174 / CESDM@voamn.org ''I

like us on facebook .(ill

www.facebook.com/cesdmvoamn/

136 137 138

WINGS MN: Impacting Communities

Supporting individuals. providers, families through education Building systems prioritizing supported decision making and alternatives to guardianship Sustaining conversations with stakeholders: improve outcomes, increase self­

severe" ypyGs! y EINNT sz YT A

WINGS MN: Impacting Communities

Annual Summit Quarterly newsletters with local and national news Community and Professional Education & Trainina Guardianshin SDM, etc.

WmxGse h ipStales ee

MINNESOTA

Join our efforts to promote alternatives to guardianship and expand networks of people addressing maltreatment of vulnerable adults:

Become a WINGS MN community member!

139 140 141

VOAMN 2019 All Rights Reserved 16

APPENDIX C 8/29/2019

RETHINKING GUARDIANSHIP FOR YOUNG ADULTS

WITH DISABILITIES

[Venue] [Month], 2019

Anita L. Raymond, LISW, CMC

Objectives

Explore reasons why families are often encouraged to seek guardianship when their child with disabilities turns eighteen and how to address concerns

Understand the benefits and potential downsides of guardianship

Describe decision making options for those with impaired decisional capacity, including supported decision making v---•----

Meet Your Presenters Not Guardians Not HCBS providers 28 years immersed in guardianship: assessing for, establishing, avoiding; training professional G/Cs Community and professional presentations: lawyers, health care, social services, advocates, self-advocates

1 2 3

Center for Excellence in Supported Decision Making

I his project was supported by the National Kesource Center for Supported Decis ion-Making and the DU S Administration for Community Living. This project was supported in part by grant number 90D4000 1-0 1-00 , from the DUS Administration for Community Laving. Department of Health and Human Services, Washington DC 20201 Grantees undertaking pro jec ts under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opnoons do not, therefore. necessarily represent official {dmnistration for Commumity Laving pokcy

y

Center for Excellence in Supported Decision Making A Program of VOA MN, funded by

DHHS Administration for Community Lring

(Ty±-s-er r WINGsf

Roadmap

Introduction: Framing the issue

Guardianship & Conservatorship: what is it, how it works, risks and benefits

Supported Decision Making: introduction and basics

Tools and Resources

4 5 6

Let's Chat! What are some choices you've made today?

What are some choices in your life that you make (made) that others would say are poor or risky choices?

Introduction: Transitioning to

Adulthood & Current Practices What's Next?

7 8 9

VOAMN 2019 All Rights Reserved 1

APPENDIX C 8/29/2019

Historically

Parents receive subtle and not-so subtle pressure to seek guardianship

e IDEA 8 Special Education Professionals e Special Olympics e Service Providers. Health Care Professionals e Other Families e Family wornes about safety and vulneratlty

An Emerging Approach

e Changing perspectives of guardianship and supporting people with disabilities

e Understanding benefits of self­ determination

e Supported Decision Making. how we all make decisions

10 11

Changing Perspectives...

Recognizing that guardianship has historically been overused

12

Current Practice

Person can't make decisions/arrange for care and housing independently

Incapacity, therefore:

Needs guardian or other decision maker

New Approach

Person can't make decisions/arrange for care and housing independently

Needs support to make decisions and arrange for care

+ Accommodations by providers / systems

Supported Decision Making

Understanding Benefits of Self­ Determination I Ability to Make Choices

13 14

Let's Chat

How would (does) ii feel if someone else with more experience made that

decision for you?

Research: Benefits of Self­ Determination

s "Older adults with more self-determination have improved psychological health including better adjustment to increased care needs" O'Conner & Vallerand, Canadian Journal on Aging, 1994

s "Women with intellectual disabilities exerising more self-determination are less likely to be abused." Khemka, Hickson, and Reynolds, 2005

15

Supported Decision Making

16 17 18

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APPENDIX C 8/29/2019

Supported Decision Making: Paradigm Shift

A way people can make own decisions, stay in charge of their lives while receiving help they need to do so."

Person making decisions with support of others vs. others making decisions for the person: "...cutting through the jargon to understand what's going on and what you need to do...

=Jonathan Martinis, Esq.

Supported Decision Making: Definition

"a recognized alternative to guardianship where people with disabilities use trusted friends, family members, and professionals to help them understand the situations and choices they face, so they may make their own decisions without the 'need' for a guardian"

(Blanck & Martinis, 2015)

Supported Decision Making:

"[JJust a fancy way of describing how we all make choices. We all need help making decisions, every single day.

~ Jonathan Martinis, Esq. (Blanck & Martinis, 2015)

19 20

"[JJust a fancy way of describino how we all make c "I don't need a guardian. I just need a little help!"

g ~ Jenny Hatch (Blanck & Martinis, 2015)

Why is This New Approach Important?

? • 22

Break Families: More on Guardianship and SDM

Self-Advocates: Listening Session about making decisions

23

21

What Guardianshi Means To M

It wante: basically live on my own.

24

Part One:

Guardianship

Guardianship & Conservatorship: What is This?

Court appointed substitute orsurrog i@'- j decision-maker $®S,, - Voluntary or involuntary (most common)

Guardianship/ Guardian/Ward = Personal and Care Decisions

Conservators hip/Conservator/Protected Person= Money and Assets Wa-»

25 26 27

VOAMN 2019 All Rights Reserved 3

APPENDIX C 8/29/2019

GUARDIANSHIP IS:

an excellent tool... .when it's necessary sometimes the only way to protect a person experiencing vulnerabilities sometimes the only way to meet the person's own goals to be utilized only in extreme circumstances when there is no other way to protect person/meet goals: last resort

Is Guardianship the Best Solution?

e An ethical issue: removing constitutional night to self-determination / autonomy: Human Rights

• Time Consuming: due process protections to ensure justifiable intrusion by government in lives of citizens

• Expensive: to incapacitated person, family, society V

Is Guardianship the Best Solution?

• Potentially emotionally devastating to person and family

• May not even solve identified problem

• The problem of scarce resources

• Negative impacts on the person

28 29 30

Can Guardianship Make Things Worse?

Risk of "mission creep' Well-intended, worried guardian Fears of liability Power and control Providers sometimes turn to guardian for all decisions

Can Guardianship Make Things Worse?

Medical Orders vs. Quality of Life (medications, special diets, smoking, sweets, etc.)

; .·a> "" J ®» ----

31 32

Can Guardianship Make Things Worse?

Choice/Risk vs. Safety a» pm:, a a3i". iii Z 33

Let's Chat

Why do you make risky decisions?

To deny the right to make choices in an effort to protect the person with disabilities from risk is to diminish their human dignity.

- Robert Perske

34 35 36

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APPENDIXC 8/29/2019

Research: Protection and Self-Determination

Labeling person 'incompetent" impacts: how others view person self-esteem and self concept: "inhibit[s] performance, diminish[es] motivation, and depress[es] mood"

Winick, B.J. (1995)

37

The Paradox of Guardianship Valuable tool to

protect Vulnerable Adult

& Heavy-handed too!

which strips constitutional night to self-determination

Can Guardianship Make Things Worse?

Loss of sense of power and self-determination = potential for

increased resistance

reduced cooperation

decreased sense of self-worth

Can Guardianship Make Things Worse?

Learning from mistakes and "poor decisions"

Restricting something for safety/health sometimes leads to worse consequences

38 39

Part Two:

Supported Decision Making

40 41 42

What is SDM?

"people who need help with decision making receive the help they need and want ·preserves nights & build on existing capacity with real life experi ence and learning •essential element for achieving self-determination & meaningful inclusion ·empowering, skill-building, trans formative approach to assisting peop le

What Happens Now?

t little to no emphasis on "teaching' decision making skills low expectations to be involved in decision-making in meaningful ways bias toward use of guardianship as primary support

Rethinking Support

how do all people become good decision makers? what role & responsibility to professionals have to support individual decision-making? what about the role of families? what could support look like? (one size does not fit all)

43 44 45

VOAMN 2019 All Rights Reserved 5

APPENDIX C 8/29/2019

Providing Support

lake direction from the person & their will & preferences customize actions lo & with the person find new tools for your toolbox: communication; peer support; practice experience; life coaching Be flexible & try multiple ways

46

What Can You Do?

acknowledge decision­ making as a basic human right & natural part of human experience

expect that all children w/ disabilities will develop as decision makers and ensure involvement in decision making throughout lifespan

What Can You Do?

help people develop relationships & support systems necessary for accessing support when needed (family, friends, trusted professionals, service providers learn to evaluate need for intervention by weighing risk of harm/failure with risk of loss of dignity, self-direction & quality of life educate people on available options

47 48

Supported Decision Making

A legal tool in Texas. Delaware, Wisconsin, D.C.. Missouri, Alaska, British Columbia, Australia. other jurisdictions...statute mentions: New Mexico, Maine. Maryland, Kansas..

A philosophical approach: a paradigm, not a process

Another less restrictive alternative on spectrum of decision making

How Does Supported Decision Making Work?

Understand we all have the right to make choices. Needing help # needing guardianship Help person develop skills and abilities

Not Everyone is a Candidate for SDM

But a lot of people are'

49 50 51

Person Likely Not a Candidate for SOM

Does not recognize need for help/refuses Resistiveness cannot be overcome Person sabotages others' efforts (and this can't be overcome) No trusted supporters Supporters not able to act per wishes/best interests (and can't be learn how to)

Person May Be a Candidate for SOM

Recognizes needs help

Has trusted others to form team

Cooperative and/or open lo trusted others' ideas

Ideally, able lo also complete HCD/POA

w

You might already be utilizing Supported Decision Making...

52 53 54

VOAMN 2019 AI Rights Reserved 6

APPENDIXC 8/29/2019

SOM Example: Managing Money nO one talks about money with the person, & person does whatever wants: not SOM

someone manages all the person's money, gives no choices about how it's spent: not SDM

=anything else -opening joint bank account, making a budget together, having a fiduciary who discusses how to spend money: is SDM

(Na tiona l Resource Center on SDM Brainstorming Guide)

SOM Example: Making Health Care Decisions

person makes own decisions without talking to anyone else: not SOM someone else makes all medical decisions for person without discussing preferences/opinions: not SDM anything else -attending medical appts. together, explains healthcare choices in plain language, shares access to medical records: is SDM

(Na tiona l Resource Center on SDM Brainstorming Guide)

SOM Example: Deciding Where to Live

person makes own decisions without consulting friends, family, professionals: not SDM someone else makes all living decisions for person without considering preferences I opinions: not SDM anything else- visiting possible residences together, making pro/con lists; discussing direct service needs: is SDM

(Na tional Resource Center on SDM Brainstorming Guide)

55 56 57

But What About....? Isn't Guardianship required when person is "incapacitated"?

Guardianship is NOT required by MN law: • to receive County Services • to sign IEP when person turns 18

Residential and Care Facilities cannot mandate appointment of Guardian as condition of admission

y.,_ .. ·-··

But What About....? Doctors won't talk to us without guardianship?

Professional Standards & Ethics

Health Care Direct ive

Consent for Release of Information

Communication

58 59

But What About....? Person may be taken advantage of?

Power Of Attorney

Representative Payee

Banking Tools

Communication

60

But What About....? Person "can't" make own medical / housing / other decisions?

POA / HCD / Rep Payee

Authorized Rep

Supported Decision Making & Communication

But What About....? Person may make a bad decision?

• Communication

What happens when people without disabilities make bad decisions?

Listening Sessions Whe n you think about getting help making decisions, what would you like to cha nge?

Malung dec1S1011s I feelmg l1k.e we ~ made good ones Feeling more confident / strong to make decision$ Overcoming fear s Getting help working through emotion Help getting the words out Overcoming Deng nervous

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VOAMN 2019 All Rights Reserved 7

APPENDIXC 8/29/2019

Listening Sessions When you think about getting help making decisions, what would you like to change

• Ensuring choices are honored I e Peopl e know me better • Making good decisions • Have more people to be able to

talk to after hours • Quicker turn around · lo fear , • Need peopl e that know me better,

know my values - W .% w

Brainstorming Guide

SOM TOOLS

How to Make an SDM Agreement

Stoplight Tool

This tool can help people brainstorm ways that they are already using supported decision­ making, and think about new ways supported decision-making could help the person with a disability learn to make her own safe. informed choices."

Quality Trust, 2016

64 65

How to use this tool: Go through each area of the individual's life. Brainstorm whether you work together to make choices in this area. You might not yet be using [SOM] in all of these fields. If you think of supports you could start using, write these down too.

If you are considering (guardianship/: [SOM] can sometimes be formalized into arrangements that prevent the need for [guardianship]. For example, the person with a disability could sign a form to let you access her medical records so you can make health decisions together.

66

If you are planning for the future: this tool can help you think about ways to learn and practice decision­ making. Learning to make good choices is a skill, and people can learn to make better, safer, and more informed choices with practice and support.

67 68 69

If a lawyer, doctor, school official, banker. or anyone else is worried that the person with a disability cannot make her own decisions: this tool can help you explain to the person the ways in which the decisions of the person with a disability are informed and safe. A Gude for Pecpe w th D sat» ties

an± "er Far. American Civil Liberties Union

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VOAMN 2019 All Rights Reserved 8

APPENDIX C 8/29/2019

@ deg you af about yr was. upporters can help ypy remember f mt wrtat , Thy <eh t» w me things gtu atct your cho, e

73 74 75

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Supported Decision Making: Paradigm Shift

"A way people can make own decisions, stay in charge of their lives while receiving help they need to do so.'

Person making decisions with support of others vs. others making decisions for the person: "...cutting through the jargon to understand what's going on and what you need to do..."

=Jonathan Martinis, Esq.

Supported Decision Making: What is This??

"a recognized alternative to guardianship where people with disabilities use trusted friends, family members, and professionals to help them understand the situations and choices they face, so they may make their own decisions without the 'need' for a guardian"

(Blanck & Martinis, 2015)

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VOAMN 2019 All Rights Reserved 9

APPENDIX C 8/29/2019

Guardianship & SOM Position or Supporting Statements

rm

The Arc

82

Let's Chat!

What doesn't work or doesn't make sense about getting help with decision making?

When you think about getting help making decisions, what would you like to change?

Let's Chat!

Who are the people in your life you go to when you want help thinking about or making or a decision?

What works about getting help with decision making?

83 84

VOA MN

RESOURCES

·Legal Services: HCD forms and more

·CESDM & Protective Services: links to articles, G&C FAQ and more

RESOURCES

National Resource Center on SDM Brainstorming Guide (and SDMA model forms)

National Resource Center on Supported Decision Making www.supported decision making.org

85 86 87

RESOURCES

How to Make an SDMA

Missouri Stoplight Tool

RESOURCES

State Courts-forms and manuals: www.mncourts.gov/Help- T opics/Guardianship­ and-Conservators hip.aspx

Bill of Rights for Wards & Protected Persons www.revisor.mn.gov/statutes/?id=524.5-120

National Resource Center on Supported Decision Making www.supported decision making.org

WINGS MN

RESOURCES

and:

Supported Decision-Making: What, Why, & How by Morgan Whitlatch

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VOAMN 2019 All Rights Reserved 10

APPENDIXC 8/29/2019

SUPPORTED DECISION MAKING AGREEMENT

EXAMPLES

RESOURCES American Association on Intellectual and Developmental Disabilities and The Arc Joint Position Statement http://aaidd.org/news-policy/policy/position­ statements/autonomy-decision-making:supports­ and-guardianship#.WH_huOkiy70

National Guardianship Association SOM Position Statement http://guardianship.org/documents/NGA_Policy_Stat ement_052016.pdf

RESOURCES

g­ , es@v .- -~---­ "g t' e

• 91

VIDEO RESOURCES What Guardianship Means to Me https://youtu.be/u6F TL7bYUAw

Missouri Tool https://youtu.be/D_XnGrCi8L 4

• Michael, St. Thomas School of Law Clinic on wcco https://youtu.be/aciKsoOvqlY

92 93

CESDM Team

y

Art.a Raymon Arla Hu dson ion Kan t.e athieen Carlson Pre gram Marget 952-945 4177 612-676 6301 952-945 41 76 952-9445 441 72 mnlugdson ob lar@hue at hleen ¢at tor at agmnd voamn org voamin org voamn o#g voamin og

Center for Excellence in Supported Decision Making

» Phone Consultation, Advice, l&R Assessments Surrogate Decision Maker Support & TA » Facilitation of Supported Decision

Making & Surrogate Decision Making Legal Toots

;.. Petitioning for G/C

94 95

Center for Excellence in Supported Decision Making

GUARDIANSHIP INFORMATION LINE

r, 952-945-4174

TC6'® 4.34-ass-174e ?,W

CESDM@voamn.org ?

CESDM & WINGS MN: Impacting Communities

Supporting individuals, providers, families through education Building systems prioritizing supported decision making and alternatives to guardianship Sustaining conversations with stakeholders: improve outcomes, increase self­ determination

INGsf -.G

V

96

CESDM & WINGS MN: Impacting Communities

Annual Summit Quarterly newsletters with local and national news Community and Professional Education & Training: Guardianship, SOM, etc.

xcsf MINNLSOLA

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VOAMN 2019 AI Rights Reserved 11

APPENDIXC 8/29/2019

Join our efforts to promote alternatives to guardianship and expand networks of people addressing maltreatment of vulnerable adults:

Become a WINGS MN community member!

100

We're Listening! We want to hear your guardianship or supported decision making story!

Please contact us to tell us more about your experience.

--" 6CD cesdm@voamn.org V •

like us on l facebook .(llf

www.facebook.com/cesdmvoamn/

101 102

103

VOAMN 2019 All Rights Reserved 12

APPENDIX D

'/ Volunteers '/ of America

MINNESOTA

WE WANT TO HEAR YOUR VOICE: SHARE YOUR STORY

Date Listening Session

Location/Event/Group: _

Agenda

[time] Welcome and Introductions [15 Minutes]

[time] Frame the Issue-The Spectrum of Decision Making [20 Minutes]

[time] Sharing Your Story-Small Group Work [30 minutes]

Who are the people in your life you go to when you want help making a decision?

What works or makes sense about getting help with decision making?

What doesn't work or doesn't make sense about getting help with decision making?

When you think about getting help making decisions, what would you like to change?

[time] Small Groups Share Their Stories with Big Group [15 minutes]

[time] Wrap Up and What's Next [10 minutes]

[time] We're Done - Thanks for coming and sharing your stories!

APPENDIX E

LISTENING SESSION with SELF-ADVOCATES

Share Your Story!

We Want to Hear Your Voice!

What: A Listening Session. We want to learn from your stories and personal experiences which are vital to help professionals, families, and other individuals understand the impact of guardianship as well as highlight "real life" examples of supported decision making.

Why: Many young people with I/DD and their families are told to get Guardianship so that

they can be safe and successful, without knowing there are many alternatives that work too.

Supported Decision Making is a new way to help people stay in charge of their own lives but get the help they need to make decisions. We need your help to teach others about this; we want to hear about your experiences! Self-advocate participants will receive a $15 gift card as our thank you for your time.

Who: Self Advocates/People with a Disability: If you make your own decisions

("you are your own guardian") by yourself or with the help of others, we want to hear your story. If you were once under a guardianship, but now have your rights back, we want to hear your story. (If you used to be a guardian for a person with I/DD but ended the guardianship to

try something less restrictive, such as Supported Decision Making, we also welcome you to join us and share your story.)

When:

Where:

Date Time (Refreshments will be served)

Location

To Register or Ask Questions Call Local Contact

Sponsored By:

APPENDIX F

'/ Volunteers '/ of America

MINNESOTA

WE WANT TO HEAR YOUR VOICE: SHARE YOUR STORY

Telling Your Story 2019 Listening Sessions Summary (36 self-advocates)

Who are the people in your life you go to when you want help thinking about or making or a decision?

Friends Boyfriend Family: aunt, siblings, parents, stepparents, cousin Community connector House mates Professionals: support staff/PCA/CM/ILS worker/counselor/social worker Doctor Therapist Co-workers Job Coach/Supervisor Guardian

What works about getting help with decision making?

Communication Job coach Make me talk (person tends to "hold things in"; people who know her well will encourage her to talk about

issue/concerns Help me get my words out [has a hard time putting thoughts into words/articulating] Conversation [talking through things helps] Supporters give me ideas Talk it through with family & friends// Talking with people Opinions on what to do Limiting choices/Narrow choices to reduce being overwhelmed People around me can help so I don't make wrong decision and/or better understand how to make decisions Good to get input Coach Good brainstorm They can give opinion of what to do; Help decide what you want to do; staff at work [many list specific people turn to for specific decisions: what work to be done that day; doctors; money; what to eat and

clean; legal affairs] To know that people around me can help so I don't make the wrong decision so I better understand how to make the

decision More relaxed Call them Feel more confident Be patient/understanding

APPENDIX F

Communication (it's not what they say, but how they say it) When to ask for help & follow through {Supporters] seeing our strengths & believing in us [Supporters having] open minds Getting a 2nd opinion Self-advocacy When thinking outside the box about how to approach a situation-sit down and talk with me. Having someone to talk to [Supporters being] available [including after work hours]

What doesn't work or doesn't make sense about getting help with decision making?

Strangers [involved with person's decision making] New staff Restrictions Keeping it in/bottling emotions Infinite amount of choices Communicating [Others] making decisions for me Tell me what to do instead of [encouraging me in making a choice II No choices Repeating Ask the right people; Don't ask people who don't know or [don't have] the authority [to make decisions] Relying on one person too much When asking for help they do not think it's important Degree after your name doesn't mean that you are a superhuman=double standard Not being listened to or heard More confused [after talking to someone] If you do not take the time to talk with me or yell or are disrespectful Don't have time When you don't get the answers you want=frustrating Afraid to ask for help/distrust Not being asked Being discounted/ "Walked all over" Fear of [staff} telling a guardian if ask a question II When asking for help, can get into trouble Lack of trust and miscommunication and missing the whole story (Game of Telephone) When people only care about their pay checks-not us (who they are supporting) When staff think they know everything When judged When pointing out the bad things more than the good Sometimes making my own decisions [doesn't work well] Sometimes others get mad at decisions we make (e.g. "you have to put your clothes away before you can go on a date")

When you think about getting help making decisions, what would you like to change?

Making decisions/feeling like we made good ones Feeling more confident/strong to make decisions Overcoming fears// no fear

APPENDIX F

Getting help working through emotions Help getting the words out Overcoming being nervous Ensuring choices are honored People know me better Making good decisions Have more people to be able to talk to after hours Quicker turn around Need people that know me better; know my values More people to go to- to ask for help/people who aren't paid to be there If I make a decision, my voice will be counted Let me make a decision Help understanding the details, options More information/plan of what to do when someone may be taking advantage of a person Don't boss me around TRUST-takes time to build-need more opportunities Losing guardianship [of self] Have more control Be able to talk about it-be a part of the decision Don't see me as lazy Make it less stressful Could learn about other options right away (SOM, limited guardianship, POA, etc) and keep revisiting it because people change Be heard Be believed Want to be able to help others

APPENDIX G (1)

'/ Volunteers '/ of America

MINNESOTA SUPPPORTED DECISION MAKING STORIES OF SUCCESS (OR CHALLENGES)

Person completing form/sharing story Date

Utilization of SDM instead of initiating Guardianship/Conservatorship

1. General description of person (gender, age/range, disability, general geographic area of state (e.g., Metro, northern, southwest, southeast, etc., living on own, with family, type of residence if not family, etc.)

2. Why was Guardianship being considered? (what was going on? Why did someone think g'ship might be needed?)

3. How did the person hear about SOM, and why was it being considered as alternative to guardianship?

4. Was an SOM agreement (or HCD, POA, Trust, etc.) completed? Why or why not?

5. How does it feel now for the person to have this defined team of supporters (does the person have a team?)

6. How does it feel for the person's family/informal support team? (are they still worried? Do they feel they know where to turn in future if needed?)

11-2018

APPENDIX G (1)

7. How does it feel for the person's formal team/providers (case managers, residential providers, health care providers, etc.)

8. What works/doesn't work about decision making?

9. Anything else you'd like to add?

10. Would the person be willing to talk to CESDM staff about interviews with the media/publishing their photo/story? If yes, please provide contact information:

Name _

Preferred method of initial contact: Email Phone Mail

Preferred time of day or other specifics? _

Contact info: _

11-2018

APPENDIX G (1)

'/ Volunteers '/ of America

MINNESOTA SUPPPORTED DECISION MAKING STORIES OF SUCCESS (OR CHALLENGES)

Person completing form/sharing story Date

Utilization of SOM instead of initiating Guardianship/Conservatorship

1. General description of person (gender, age/range, disability, general geographic area of state (e.g., Metro, northern, southwest, southeast, etc., living on own, with family, type of residence if not family, etc.)

2. Why was Guardianship being considered? (what was going on? Why did someone think g'ship might be needed?)

3. How did the person hear about SOM, and why was it being considered as alternative to guardianship?

4. Was an SOM agreement (or HCD, POA, Trust, etc.) completed? Why or why not?

5. How does it feel now for the person to have this defined team of supporters (does the person have a team?)

6. How does it feel for the person's family/informal support team? (are they still worried? Do they feel they know where to turn in future if needed?)

11-2018

APPENDIX F

Getting help working through emotions Help getting the words out Overcoming being nervous Ensuring choices are honored People know me better Making good decisions Have more people to be able to talk to after hours Quicker turn around Need people that know me better; know my values More people to go to- to ask for help/people who aren't paid to be there If I make a decision, my voice will be counted Let me make a decision Help understanding the details, options More information/plan of what to do when someone may be taking advantage of a person Don't boss me around TRUST-takes time to build-need more opportunities Losing guardianship [of self] Have more control Be able to talk about it-be a part of the decision Don't see me as lazy Make it less stressful Could learn about other options right away (SOM, limited guardianship, POA, etc) and keep revisiting it because people change Be heard Be believed Want to be able to help others

/ Volunteers 'f of America MINNESOTA

SUPPPORTED DECISION MAKING STORIES OF SUCCESS (OR CHALLENGES)

Person completing form/sharing story Date

For Termination of Guardianship/Conservatorship

1. General description of person (gender, age/range, disability, general geographic area of state (e.g., Metro, northern, southwest, southeast, etc., living on own, with family, type of residence if not family, etc.)

2. Type of guardianship: public or private? Family/friend or professional? Private pay or IFP/county contract guardian?

3. Why was the Guardianship initiated? (what was going on? Why did someone think g'ship was needed?)

4. How did the person experience guardianship (what was it like for the person? Did it accomplish identified safety/other concerns?)

5. Why was/is termination sought? (what, if anything, is different now than at time of appointment?)

11-2018

6. Describe the termination process (did anyone object? Did the court readily grant the termination? Did it feel easy? Hard?)

7. Was supported decision making specifically mentioned (by petitioner, court appointed, judge) as alternative to guardianship?

8. Was an SDM agreement (or HCD, POA, Trust, etc.) completed in preparation for, or after, termination?

9. How does it feel now for the person whose rights were restored?

10. What works/ doesn't work about getting help with decision making?

11. Any thing else you'd like to add?

12. Would the person be willing to talk to CESDM staff about interviews with the media/publishing their photo/story? If yes, please provide contact information:

Name ----------------------

Preferred method of initial contact: Email Phone Mail

Preferred time of day or other specifics? _

Contact info: ----------

11-2018