Addressing the School-to-Guardianship Pipeline

Approximately 1.5 million adults are under active guardianship or conservatorship, according to Bloomberg Law. An unknown number of these adults are young adults with disabilities, often intellectual and/or developmental disabilities (I/DD). These young adults are often funneled into guardianship by what the National Council on Disability (NCD) in its 2018 report called the “school-to-guardianship pipeline,” a phenomenon where schools are, by default, recommending to parents that they start the process of assuming guardianship over their disabled child before they become an adult. The NCD stated that schools often recommend guardianship due to the widespread and erroneous belief that people with disabilities are less capable of making autonomous decisions. This line of thinking is unnecessary, Jonathan Martinis, Senior Director for Law and Policy, Esq., J.D. at Syracuse University’s Burton Blatt Institute, said in an interview with the American Bar Association’s Commission on Disability Rights, because it frequently strips adults capable of making their own decisions of their rights.

“What rights are the most important to you?” Martinis asked, rhetorically, then enumerated some examples of freedoms that the average American has, such as the freedom of speech or to determine one’s living or work arrangements. He added, “If those rights are important to you, then that answers the question” of why guardianship should not be the default for students who have reached the age of majority. “Because, by definition, guardianship takes away rights from people.” Studies have shown that when people with disabilities have more control over their lives, when they have self-determination, they tend to thrive at school, work, and in their communities.

Schools should be suggesting alternatives to guardianship to parents instead, Martinis said. He is best known for his work on Supported Decision-Making (SDM), an alternative to guardianship and a process of making decisions with the support of one’s community. Through SDM, adults with disabilities can make informed decisions, maintaining their autonomy and independence, and fulfilling one of the mandates of the Individuals with Disabilities in Education Act to enable students to “be prepared to lead productive and independent adult lives, to the maximum extent possible.”

Martinis secured a major victory for proponents of SDM more than a decade ago. On August 2, 2013, a judge declared that Jenny Hatch, then a 29-year-old woman with Down syndrome under a temporary guardianship she did not want, could, after one year, regain decision-making authority. Most significantly, the Court determined that, while in guardianship and after the guardianship terminated, Hatch should use SDM. Since then, more than half of the states in the U.S. have changed their laws to recognize SDM as an alternative to guardianship. Particularly noteworthy, six states and D.C. have passed laws that recognize SDM within transition planning and transfer-of-rights discussions for students with disabilities approaching the age of majority.

Asked how parents, many of whom don’t have the money to hire an attorney, can determine whether guardianship is necessary, Martinis responded that they can ask the school, “Where is my child needing support?” Once it’s clear what those needs are, parents and school can start to address them. And it’s best to include the student, who can use SDM to develop a plan, Martinis said.

The District of Columbia Public Schools created the first education policy on SDM. “They talk about working with kids in pre-K on building networks to help them make decisions,” Martinis said. “I always say it sounds like a joke. You have a three-year-old trying to decide between cookies and crackers or orange juice and apple juice. But here’s why it’s brilliant. Because if you take a pre-K student and tell them that they have a choice to make, and [that] it’s their choice to make, and that they should seek help and support in making that choice, what you’ve done is you’ve started a habit. And as decisions get tougher, as they get older, they’ll use that habit, and they’ll know that decision-making is important, and that support is important, and those things carry through the rest of their lives.”

Rebecca Smith-Hill, Ph.D., serves as Associate Director, Center for Transition Research and Leadership at the University of South Carolina, and is a social worker, a former middle school and high school special education teacher, and an adjunct professor. She agrees that teaching students SDM skills early on is critical. She said that the issue at the heart of the pipeline is “the over-protection of people with disabilities—in particular, those with an intellectual disability.” Smith-Hill added that “the whole idea of low expectations for people with disabilities, particularly intellectual disabilities, must be changed for the guardianship conversation to change substantially.”

Smith-Hill has written about the role of social workers in improving transition outcomes through alternatives to guardianship. She noted that there are “so many alternatives to guardianship—and there are alternatives along a continuum as well,” including medical or financial power of attorney. Social workers should learn as much as they can about SDM and then share their knowledge with other social workers, professionals, teachers, and parents. Smith-Hill added that “social workers who are doing direct service/support work with students with disabilities can empower these folks by giving them opportunities for and teaching them skills toward self-determination,” and that their parents should be educated on their importance.

Shawn Ullman serves as the Chief Executive Officer at Quality Trust, a DC-based nonprofit advocacy organization dedicated to ensuring that people with intellectual and developmental disabilities have the supports and services they need to live full and meaningful lives. In an interview with the Commission, she stated that lawyers working with young adults with disabilities and their families “have a responsibility to ensure they understand and are guiding their clients through the wide array of decision-making options available beyond guardianship.”

Quality Trust helped create the National Resource Center for Supported Decision-Making, launched in January 2015. For more than a decade, the Center has trained thousands of people throughout the country on SDM and continues to provide training and technical assistance. They also assist young adults residing in the District of Columbia to execute legal documents that implement alternatives to guardianship, such as SDM Agreements and Powers of Attorney.

Funding cuts to federal programs and other legislative decisions could exacerbate the school-to-guardianship pipeline, Ullman and Smith-Hill said. For example, if Medicaid is cut or restructured, fewer services funded through Medicaid such as in-home care will be available, which could “roll back decades of advocacy for people with disabilities and a possible regression to large, congregate facilities where people are isolated from their families and support networks, have limited if any choices, and little opportunity for employment or growth toward independence,” Ullman explained.

In conclusion, where guardianship is being considered for special education students who age out of IDEA eligibility (usually age 21 or upon graduation), it is essential that schools, parents, social workers, and lawyers explore alternatives such as SDM that empower individuals with disabilities to make informed choices about how they want to live their lives. 

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Addressing the School-to-Guardianship Pipeline

In Senate testimony, county supervisor supports alternative to guardianship

By Rice County Communications

Megan Thomas, Rice County Adult Services Manager, testifies before the Minnesota Senate Human Services Committee Wednesday, endorsing a bill that would ensure unspent funds intended to help launch supported decision-making programs across the state can be used for that purpose in 2026. (YouTube screenshot)

$2.6 million — that’s how much Rice County spent on guardianship-associated costs between 2022-24.

In just the last six months, Rice County Adult Services Manager Megan Thomas told a Minnesota Senate committee Wednesday, the county, through its Supported Decision-Making unit, has diverted three people from court-ordered guardianship and moved one resident, who had been homeless for five years, into assisted living and helped get his medical needs met. In addition, it’s received 35 referrals for assistance.

By allowing residents able to manage their lives without the constraints of guardianship retain their ability to make important life decisions, individuals not only maintain their dignity and control of their lives, but counties reduce staff costs and attorneys’ fees and eliminate an unnecessary burden on the courts, Thomas said of her support of a bill extending funding for supported decision making programs.

“The more we can divert people out of our system, the more we can save our taxpayers,” she said.

Rice County launched its supportive decision making unit in late 2024 with help from a $291,500 state grant. The funds helped it employ, educate and train staff who serve individuals who need or want an advocate to guide them through a decision-making Thomas, who oversaw group homes for people with disabilities for 20 years before coming to work for Rice County, understands there are individuals who need guardianship. But, she says, one size does not fit all.

Supported Decision-Making staff are social workers, but unlike guardians, they don’t make decisions for clients, which Thomas says causes tension and animosity toward people trying to help. Instead, Supported Decision-Making connects clients with experts and/or services, ensuring they have accurate information on which to base their decisions.

“We need to do better in Minnesota, recognizing the rights and responsibilities that people have when it comes to making their own decisions and being able to live out their life in a way they choose,” she said, adding that supported decision-making programs allow just that.

The bill (SF 2310), authored by state Sen. Jordan Rasmusson and supported by a number of statewide organizations serving the disabled and elderly, would allow unspent grant dollars from 2023 that were intended to help launch supported decision-making programs across the state to be available in 2026. It also amends the deadline for the Human Services commissioner to deliver a final report on the impact and outcomes of the grants.

“As a less restrictive alternative to guardianship, Supported Decision-Making of Rice County is having an immeasurable positive impact and benefit to individuals, their families and the community,” said Rick Gieseke, Rice County Deputy Administrator Community Services. “We look forward to its continued success.”

LEARN MORE: Find information about Supported Decision-Making of Rice County at https://bit.ly/RiceCo_SupportedDecision-Making. 

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In Senate testimony, county supervisor supports alternative to guardianship

Bill addresses decision-making for Ohioans with developmental disabilities

by: Ava Boldizar

COLUMBUS, Ohio (WCMH) – A bill in the Ohio Statehouse seeks to establish a presumption that all adults with developmental disabilities are capable of making their own decisions unless otherwise determined by a court. 

Senate Bill 35, sponsored by Sens. Michele Reynolds (R-Franklin County) and Jerry Cirino (R-Kirtland), was introduced in January. Along with declaring that adults with developmental disabilities should be presumed capable of managing their affairs, the bill would legally establish a “less restrictive” alternative to guardianship, called “supported decision making” (SDM), according to Reynolds. 

SDM allows individuals with developmental disabilities to retain their legal decision making authority while receiving support from chosen advisers who can help them understand, make and communicate their decisions. The bill would allow the advisors to be formally chosen through a written plan, or chosen informally.

In a guardianship, a family member or other entity is in charge of an individual’s affairs and ultimately makes decisions for them, when a court finds that person is incapable of making their own decisions due to a mental disability, according to the nonprofit Disability Rights Ohio.

“This legislation addresses a significant need in our current system,” Reynolds said at the bill’s first hearing in February. “Many adults with developmental disabilities find that full guardianship is more restrictive than necessary, while complete independence may not provide adequate support.”

Under the bill, entering into a SDM plan could not be used as grounds for a court to find that an adult is incapable of managing their own affairs. Adults with developmental disabilities who use a SDM plan would be allowed to act independently of their advisors and end the plan at any time. The bill additionally clarifies that adults with developmental disabilities could not be forced into a SDM plan.

Reynolds said that the approach recognizes that “disability exists on a spectrum” and that many adults with developmental disabilities are capable of making their own decisions. Twenty-three states have enacted similar legislation, according to the lawmakers.

“Supported decision making protects adults with developmental disabilities from exploitation because they maintain control over their own lives and decisions,” Cirino said.

If the bill were to pass, the Ohio Department of Developmental Disabilities would develop example SDM plans and educational materials. 

The bill had its second hearing earlier this month, where 13 entities testified in support of the legislation, including the Down Syndrome Association of Central Ohio and the Ohio Association of County Boards of Developmental Disabilities (OACB).

“Unfortunately, in many instances, guardianship represents an all-or-nothing decision for the courts to make when they are asked to balance a person’s health and safety with their ability to make decisions about their own future,” said Jake Dowling, a legislative affairs manager with OACB. “Supported decision making offers a middle path that preserves both.”

Greg Carter, the parent and legal guardian of an adult with developmental disabilities, told NBC4 he questions how the legislation would affect those currently under a guardianship arrangement.

“A parent who has been a part of their child’s life all along should not have to jump through any hoops to continue in the role of decision maker for their loved one simply because the calendar turns a page,” Carter said. “I question the motivation and need for a [policy] such as this.”

While a hearing for opponent testimony has not yet been held for the legislation, some critics of the concept have come out against a recently introduced budget bill including language that would codify SDM in Ohio law.

Caroline Lahrmann, an Ohio mother, testified against the budget bill (HB 96) saying those with developmental disabilities can already have friends and family assist them with decision making without new legislation. Harris Capps, a parent and legal guardian, echoed the same sentiment, calling sections of the bill addressing SDM “unnecessary” and “redundant.”

“SDM as policy could result in a degradation of Ohio’s guardianship system while providing more opportunities for frivolous lawsuits,” Capps said.

Current Ohio law requires those with developmental disabilities to be able to manage their financial affairs if they are able, participate in decisions that affect their lives, and select a parent or advocate to act on their behalf.

Cirino introduced a similar bill in the last General Assembly that did not pass before the end of the legislative session. SB 35 was assigned to the Senate Judiciary Committee and currently has one Republican cosponsor. 

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Bill addresses decision-making for Ohioans with developmental disabilities

Law to promote alternative to guardianship goes into effect

by Danielle DaRos

TALLAHASSEE, Fla. (CBS12) — A new law goes into effect Monday that directs judges to consider a less restrictive alternative to guardianships, called Supported Decision Making.

For years, the CBS12 News I-Team has been reporting on the problems in Florida's guardianship system, in which incapacitated people lose all of their rights, access to money, and too often, become victims of abuse.

Now, a new law requires judges to consider Supported Decision Making for Floridians with disabilities, who do not need full-fledged guardianship. 

Instead of having a professional guardian exercise complete control over an individual in a restrictive court-ordered arrangement, Supported Decision Making allows an individual to maintain their freedom and rights. The individual has trusted advisors, like friends, relatives, mentors, pastors, etc., that help them make certain decisions.  

"I'm hearing from families all over the state about how much this is going to help them," Rep. Allison Tant, D-Tallahassee said. She said under guardianships, families used to have to go to court to help their loved ones make decisions.

Rep. Tant has been advocating for a Supported Decision Making law for years and finally saw it pass this year with unanimous support in the legislature.

Disability Rights Florida supported the passage of the law, and celebrated by calling it a "huge win" when Gov. DeSantis signed it last month.

"It’s really important to have other options," said Caitlyn Clibbon, Director of Community and Healthcare Services for Disability Rights Florida. "If there’s any way for a person to maintain their rights, whether that’s through power of attorney or through someone helping to make decisions through supported decision making, [we want to] to preserve everyone’s rights to the greatest extent possible."

A Port St. Lucie man named Michael Lincoln McCreight was an inspiration for the Supported Decision Making law. Three years ago, the I-Team profiled his journey of breaking out of a guardianship using the Supported Decision Making model. He was the first Floridian to do so. 

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Law to promote alternative to guardianship goes into effect

I am an Adult With Autism. I Built a Team to Help Me Make Decisions

by Jonathan Gardner with Sarah Boonin

I am a 21-year-old home school graduate and cancer survivor who happens to have autism. A lot of people like me have a guardian — but I don’t. A guardian is someone like a family member, friend or professional appointed by the court to make decisions about another person’s health, safety and self-care when the court decides that person can’t make their own decisions. Instead of a guardian, I use a tool called supported decision-making or SDM.

When I was 16, the public school system told my mother and me that I would need full guardianship once I turned 18. In that case, my legal guardian would have the final say in all major decisions about my life, including where I would live and what services I would receive, along with all of my financial and medical decisions — likely for the rest of my life. This didn't feel right. I had always been involved in making my own decisions, and it didn’t make sense to take that away from me once I became an adult. Luckily, my mom knew a little about SDM, so we decided to try that instead.

SDM is an alternative to guardianship where a person like me, a “decision-maker,” picks a group of people they trust to help them make their own decisions. SDM enables me to be the CEO of my own life — just like most other people. I have used SDM my entire adult life, including in my fight against cancer. I would not be the person I am today without SDM.

I started by choosing the people I trust most to be my “supporters.” I then chose which supporters would help me with which types of decisions, and how I wanted each of them to help. My supporters include my mom, dad, brother, my mentor, friends, a therapist and others. I entered into an agreement with my supporters, and my plan has evolved as I’ve gotten older. My supporters provide different types of advice and assistance to me so I can live my best life. Thanks to SDM, I am the one in control of my life, not a judge or guardian.

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I am an Adult with Autism. I Built a Team to Help Me Make Decisions

Supported Decision-Making Pitched As Needed Alternative To Guardianship

Written by Colin A. Young/SHNS

BOSTON (State House News Service) — A parade of self-advocates, parents, lawyers and others went before the Judiciary Committee on Tuesday to press lawmakers to formally enshrine in law an arrangement that aims to empower people with disabilities and elders to make important life decisions with the help of trusted advisers.

Legislation (H 1485) filed by Reps. Michael Finn and Sean Garballey would establish a legal framework for individuals with disabilities and elders to make their own decisions with the aid of people they trust using a method known as supported decision-making (SDM). The Senate version of the bill (S 109) filed by Sen. Joan Lovely was heard by the Committee on Children, Families and Persons With Disabilities last month.

The concept of supported decision-making -- an arrangement in which people with disabilities or cognitive limitations can designate a person or people to help them make their own decisions with support rather than having someone else, often a legally-appointed guardian, make decisions for them -- has been piloted here since 2014.

"Everyone uses SDM every day. Even all of you sitting here today will be using SDM. It is hard to believe, but everyone uses SDM in their life -- friends, family, coworkers, we all have to talk to somebody about something," Kim Plaut, a board member of the self-advocacy organization Massachusetts Advocates Standing Strong, told the Judiciary Committee. "Today, you guys will sit together and decide whether or not to pass this bill. That is SDM; talking to each other, making a decision in your lives. Please pass the supported decision-making bill so that we have that same opportunity as people with disabilities to make decisions in our lives."

Bill backers told the committee that supported decision-making, which the Mass. Developmental Disabilities Council describes as "an alternative to guardianship that allows an individual to make decisions about his or her own life with a team of chosen supporters," does not take guardianship off the table as an option.

Barbara L'Italien, the former state senator who is now executive director at the Disability Law Center, told the committee about conversations she had with former Rep. Tom Sannicandro, a lawyer who specializes in estate planning for families with children with special needs, around the time that her son with autism was turning 18 years old. She said she thought her son would benefit from some guidance, but that guardianship "felt so heavy-handed, so over the top, and so unnecessary for my son."

"For my son, having the opportunity to weigh in on issues around his health, his finances, his housing, his employment, his social relationships is critically important and central to his sense of wellbeing. And so the thought that that would be taken away, in part or in whole, just did not make sense. So we did not seek guardianship," L'Italien said. "However, we are -- my husband and I are -- part of my son's life every single day and try to help him. But he leads the way, and that's the way it needs to be. And so I really believe that we have a gaping hole here in Massachusetts, having an all-or-nothing approach to supporting and assisting folks."

While some of the people who testified gave examples of having a parent act as a decision-making supporter, supporters do not have to be relatives and a person can have a team of supporters who each advise on a particular subset of issues.

Massachusetts Advocates for Children Executive Director Anna Krieger told the committee that the bill will do a few important things: it will make supported decision-making more accessible by requiring schools and courts to mention it as an alternative when discussing guardianship, it will clearly define the roles of a supporter, and it will establish rules for what must be included in a supported decision-making agreement.

"It also includes -- and this piece is maybe not the most exciting and glamorous, but really important -- a liability shield for third parties who are relying in good faith on the agreement. And we know because we do lots of training of hospitals and other places that until we have a protection like that, it's just not going to be embraced on a large scale," Krieger said.

Maura Sullivan, senior director of government affairs and health policy at The Arc of Massachusetts, drew on her experience teaching at medical schools in Massachusetts and told the committee that it will take a state law for supported decision-making to really catch on.

"Last year when the bill passed unanimously through the Senate, I had requests from health care professionals to provide trainings. And that was until I answered their first question, 'is it law yet?' And when I said, 'no, but it's currently being used,' there was no longer interest in being trained," she said. "A state law will be the only way to fortify this worldwide self-determination and human rights movement."

Supported decision-making legislation that Lovely filed last session won a favorable report from the Children, Families and Persons With Disabilities Committee and was passed unanimously by the Senate last November. It got to the House Ways and Means Committee with less than two months left in the session and did not re-emerge.

The session before that, the Children, Families and Persons With Disabilities Committee redrafted and advanced House and Senate versions of supported-decision making bills. In the Senate, the bill died in the Ways and Means Committee, while the House granted initial approval to its bill but took no further action on it.

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Supported Decision-Making Pitched As Needed Alternative To Guardianship

Beth's story: She says being a 'non-speaker' shouldn't mean losing her right to decide for herself

By Kirsten Dorman

Many of us take the decisions we make for ourselves everyday – from where we live and work to who we vote for or marry – for granted. But for an unknown number of people across the country, those rights were legally taken away.

Stories of conservatorship and legal guardianship for “pop princess” Britney Spears and football star Michael Oher have gripped the nation. Many other stories have gone largely untold.

A 'non-speaker' finds her voice

Becky King

Beth Papp (left) and Emily Ulan attended Taylor Swift's Eras Tour together in March 2023 in Glendale.

Mesa resident Beth Papp is like many other 22-year-olds. She’s opinionated, funny and a huge fan of Taylor Swift. She loves watching shows like "Survivor" and trips to Target.

Papp refers to herself as a "non-speaker."

“I want everyone to know I’m in here!” Papp said.

To communicate, Papp uses boards with letters and some symbols to spell out phrases. This one is like a tablet. When Papp indicates a phrase is complete, it’s read out loud.

Sometimes, she uses a board made of plastic or laminated paper, pointing to each letter.

Then her communication partner, Emily Ulan, reads them out.

Ulan has helped Papp learn how to do this over the past year. She also holds the boards up for Papp to access better.

“We have a lot in common,” Ulan said. “It’s crazy because I do this for a living, but she’s my first client. And I consider her more of a friend than a client.”

'It's guardianship, or not.'

Becky King

Becky King, Beth Papp's mom, said that Papp began producing some words around a year old like most other babies do.

Papp’s mom, Becky King, said that like other babies, Papp began saying a few words at around a year old.

“And then at 18 months, it just … stopped,” she recalled.

A checkup soon after that produced an initial diagnosis.

“PDD-NOS,” said King. “Which is Pervasive Development Disorder Not Otherwise Specified. And my understanding is they don’t actually use that anymore because now autism has become a broader spectrum.”

Then at 5 years old, Papp was officially diagnosed with autism. King said that as her daughter grew closer to adulthood, knowing that services would begin to change or even disappear was stressful.

“What are we supposed to do next?” said King. “She still has no way to reliably communicate.”

So, she began looking into their options.

“Honestly back then there wasn’t a lot of options,” King said. “It’s guardianship, or not.”

King remembers the intense pressure, and scary impressions about what could happen if she didn’t act as Papp’s 18th birthday approached.

“Everyone including the doctors said ‘Well of course, it’s gotta be a full guardianship. Like, clearly she can’t possibly take care of herself or have an opinion about things. So this is the way you guys should do it,’” King recounted. “So we just kind of did it that way.”

“It is unfortunately really common that parents of young adults with– especially with intellectual developmental disabilities are told by schools, by doctors, by everyone around them, that guardianship is something they should seek as a matter of course,” said Zoe Brennan-Krohn, an attorney with the ACLU’s Disability Rights Program.

According to Brennan-Krohn that advice isn’t just incorrect, but harmful.

“There are a lot of alternative ways that people, young adults, adults with disabilities, can get support and help without losing all of their rights,” Brennan-Krohn said. “Guardianship is very hard to undo and is very often permanent.”

A new option: Supported decision making 

Becky King

Around 18 months old, Becky King said daughter Beth Papp completely stopped producing any language.

“Guardianship at its core means the court is removing someone’s right to act for themself,” said Morgan Whitlatch, the director of Supported Decision Making Initiatives at the Center for Public Representation in Washington, D.C. “It’s been called a kind of civil death, a non-personhood.”

You might be thinking: ‘I’ve heard of that! It’s like what Britney Spears went through, or what Michael Oher is petitioning for release from.’

“In some states they might call a decision-making authority a conservatorship,” said Meagham Kramer, an attorney who works with the Arizona Disability Law Center. “In Arizona, conservatorship really has to do more with money and guardianship has to do more with general decision-making.”

In June, supported decision making was signed into Arizona law as an alternative to guardianship. Whitlatch says it’s something everyone uses, regardless of their disability status or age.

“Every day we all use the advice and we get advice from people we trust,” said Whitlatch. “We have people help us weigh the pros and cons.”

Whitlatch added that supported decision making could be argued for as an accommodation under the Americans with Disabilities Act.

Kramer said that while that’s true, having supported decision making specifically signed into law bolsters chances of properly implementing it.

“We’ve now passed the thing, and we need everyone to understand the thing so it’s more than just a piece of paper,” Kramer said, “[so] it actually allows people to use these supported decision making agreements to make decisions in their lives.”

'I want to be my own guardian.'

Becky King

The opportunity for Beth Papp to learn how to use her communication method came from her Empowerment Scholarship Account, which is paid for through the state.

King said now that Papp can communicate, it’s like she’s finally been able to get to know her daughter. And Papp said that even though she wants to walk back her guardianship, the two remain close.

“Spending time with her is my fav,” Papp said. “She gets me.”

But Papp’s communication method isn’t recognized by the court system, King said.

Some consider it controversial due to concerns surrounding authorship – or who’s crafting and influencing the messages.

But one message is clear: “I want to be my own guardian. I want to make decisions for myself,” Papp said.

Whitlatch said this isn’t uncommon for people like Papp. There’s a wide range of communication methods and experiences. But according to Whitlatch, for the most part “people who don't speak to communicate or have other mechanisms for communication are those that are probably most impacted by guardianship and are less likely to have their "voice" heard in court.”

A protected person’s condition and circumstances can change. But no matter what, the evidence for whether the law considers someone ‘incapacitated’ has to be ‘clear and convincing.’

“Frequently, there is a tendency by society to infantilize people with developmental disabilities, to assume that their capacity or their abilities are somehow static,” Whitlatch said, “that they won’t change over time. And that’s not accurate.”

Guardianship courts fall short on accessibility 

Becky King

Beth Papp attended Taylor Swift's Eras Tour in March 2023 when the artist performed in Glendale. Papp says she loves Swift's "Red" album.

Brennan-Krohn said it’s important to reconsider the ways we consider and interact with people with disabilities at all levels. It’s about “being aware of where this very deep-seated sense of paternalism crops up, and how we can try to challenge that,” she said.

Which Brennan-Krohn said means treating people with disabilities as adults, with their own preferences and wishes.

“It is striking and troubling that the court systems that you go through to get into a guardianship or to get out of a guardianship are very, very inaccessible to people with disabilities,” said Brennan-Krohn.

The ADA requires courts to make reasonable accommodations for people but, Brennan-Krohn said, “it’s very rare that courts slow that process down in a way that can make it actually accessible to someone with a disability.”

Kramer said that in Arizona courts, an ADA coordinator works to ensure accommodation requests are met.

“Often a big part of the labor in getting an accommodation granted is educating the people who you need an accommodation from or the system or entity that you need an accommodation from about your disability,” said Kramer.

Which includes accommodations for how someone communicates. But according to Kramer, sometimes logistics – like not enough certified interpreters or scheduling issues – get in the way.

In Papp’s case: Her communication method is so new that there’s little research on it.

King compares it to driving a car: Starting off with an instructor to give pointers, help you focus and learn, until you’re ready to hit the road on your own.

'Music is my voice'

With the lengthy, uphill legal battle she’s facing, Papp’s taking a breather.

“It’s an incredibly intense experience for a completely verbal, non-autistic person,” King said. “But she said that she was not up to a day-long hearing. And her direct quote to me was: ‘I didn’t realize my spelling would be on trial. … I can’t do this right now.’”

But Papp isn’t giving up.

“I’m trying to open the doors that were closed for me!” said Papp. “Ever since I started spelling this has been my goal!”

To express her feelings, Papp wrote a song.

“I had a dream where I was heard, where people listened to my words” the lyrics read. “Hear me, listen to my voice. I am here inside.”

The song closes out with the lines: “I have no more to give. I have tried and tried. And now, it’s your turn.”

Papp said it's a direct message, to those who have been in her life "but also the world!"

“Music is my voice,” she said. “It’s how I’ve always communicated, even before I started spelling.”

Papp said she wants to advocate for other non-speakers, too.

“I want people to presume competence in everyone,” said Papp.

Papp said she hopes change will come with time.

“OMG,” she said, “I hope it’s a totally different conversation where we are not questioning validity. Instead, we incorporate non-speakers into any decision making regarding us.”

Despite legal difficulties, her vision for the future remains.

“Having the chance to make my own decisions about life is the dream,” Papp said. “It is as simple as deciding where I want to live and how I want to spend my time.”

But outside of all that, Papp is just focused on "feeling 22," as her favorite artist might say.

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Beth's story: She says being a 'non-speaker' shouldn't mean losing her right to decide for herself

After Britney Spears battle and local scandals, Alabama advocates push alternatives to guardianship

Colby Spangler studies at the University of Alabama and promotes alternatives to legal guardianship, which strips people of independence.

By Amy Yurkanin

Colby Spangler, 22, may not seem to have much in common with singer Britney Spears.

The young man from Shelby County did play music in his high school band but now focuses on wildlife studies through a program offered by the University of Alabama for students with intellectual disabilities. Spangler, who is in his last year of study, works part-time, belongs to a fraternity and lives in an apartment.

But his mom, Kim Spangler, said her son was in “the school-to-guardianship pipeline” until he hit high school. Many well-meaning people involved in special education advised her to seek guardianship when he turned 19 so he could continue to receive services.

“Schools will tell you as soon as they turn 19, you need to become their guardian,” Kim Spangler said. “So we just kind of believed that. The more research we did, the more we realized it wasn’t absolutely necessary.”

Instead of entering a guardianship, like the one Spears recently had dissolved, Spangler and his family opted for an alternative that gives him more control. It’s called supported decision-making, and the system surrounds him with support from friends and family.

Spangler’s decision-making team consists of several people who can offer advice on everything from social life to finances. Kim Spangler said it took about a year and a half to build her son’s team. It has nine people who each cover specific areas such as independent living, safety and spiritual growth. They can advise and help guide Spangler, but ultimately he makes the decisions.

Courts can award guardianship to a family member or professional if an expert determines a person cannot make rational decisions. Some people need guardians, said James Tucker, director of the Alabama Disabilities Advocacy Program.

But the system also strips people of their rights and independence. The Britney Spears case, and the conservatorship case of Golden Flake heiress Joann Bashinksy in Alabama, also raised questions about whether a legal framework designed for protection can be used to exploit individuals, including the elderly and disabled. The default in Alabama has been for courts to award full guardianships in cases like Spangler’s when a more limited arrangement might be better, Tucker said.

“The neat thing about this support decision-making is that the child is a young adult learning to live independently like other young adults,” Tucker said.

Several states have passed laws recognizing supported decision-making as an alternative to guardianship, but not Alabama.

Kim Spangler wants other adults to know supported decision-making can work for families and people with disabilities. If she had become her son’s guardian when he turned 19, Spangler probably wouldn’t have been able to attend the University of Alabama and thrive in ways she never expected.

“I know COVID came around and messed everything up, but my adult life is really easy right now,” Spangler said.

One day, Spangler told his mother he wanted to join a fraternity. He pledged Beta Upsilon Chi, a Christian fraternity known as BYX. He recently traveled with them to Six Flags in Georgia.

“I went online and found fraternities and looked for one I would want to join,” Spangler said.

That caught his mother off guard. Kim Spangler said learning to let go and trust her son has been hard but rewarding.

“Colby has met or exceeded every single one of the challenges and has kind of demonstrated his capacity to us,” Spangler said. “We think he is ready for a more independent kind of life and we think he will do very well.”

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After Britney Spears battle and local scandals, Alabama advocates push alternatives to guardianship

Guardianship requests decline as knowledge of alternative legal option grows

Supportive decision-making alternative helps maintain people’s rights to make decisions

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By Emily Davies

AUBURNDALE, Wis. (WSAW) - In July 2020 Jordan Anderson and his twin, marked a milestone; the two turned 18 and became legal adults. It is a big day for anyone, but especially for children with disabilities and their families. Born 12 weeks early, the two have cerebral palsy.

The Auburndale family scheduled a hearing with the court that fall so Anderson’s parents could have legal guardianship over them to protect them and support them as they go through adulthood. In addition to planning for the two to graduate high school and prepare for their future, securing guardianship is an expected next step for many families who have children with disabilities.

Just before the hearing, Anderson attended a virtual conference that empowers people with disabilities called the Wisconsin Self-Determination Conference. He sat in on a session George Zaske, an attorney and member of the Wisconsin Board for People With Developmental Disabilities, led.

“That was the first time I’ve ever heard about supportive decision-making,” Anderson said. “Once I heard George say you might lose your right to vote, that really got my mind going.”

The sports, journalism, politics, and hunting enthusiast also learned guardianship could take away his right to hunt and make decisions.

“These are pretty significant decisions,” Zaske told NewsChannel 7. “A guardianship order can transfer all of the rights to a guardian and that guardianship order can stay in place for decades.”

After listening to the concerns and frustrations of individuals and families navigating the guardianship system, the Wisconsin Board for People With Developmental Disabilities worked with legislators to offer a less restrictive alternative. Wisconsin became one of the first five states in the country to enact the supportive decision-making law in 2018.

It is a legal document that gives the person with a disability or aging individual the ability to get support from people they trust in areas they need support, like making financial or medical decisions but leaves the ultimate decision about what to do in those circumstances up to that individual. It is a document that does not require the time or cost of going to court and is recognized by the State of Wisconsin.

“Without a law that is equally recognized the way guardianship is recognized, you know, families ran the risk of saying ‘yes, my family member wants supportive decision-making,’ but then going into a formal system like a school or a hospital and not having that recognized,” WBPDD’s executive director, Beth Swedeen stated.

Anderson learned all about the option a day before his guardianship hearing. The next morning as he was getting ready for school, he talked with his parents, shared his concerns, and told him about supported decision-making.

Anderson’s parents, like many other people looking to find ways to protect and support loved ones with disabilities, were told by attorneys they could either have guardianship over their son or no guardianship. When told about supportive decision-making, their attorneys said they had to do more research.

Since the law was introduced, guardianship requests have declined each year from 5,147 in 2017 to 4,146 by 2020. Zaske said there is still a lot of education need about supportive decision-making, noting that institutions like schools, medical facilities, financial institutions, and even judges are not aware of the different options.

“Until supportive decision-making came around, it (guardianship) was really the only option. It was kind of black and white and people over-protected their loved ones and checked a lot of options that are on the guardianship petition,” Zaske, a parent of a child with disabilities said.

As a parent, he recognized that you want to do everything to protect your child because they are not as supported in the adult world as they were as a child going through school. He noted just like all adults making their own decision, adults with disabilities may make mistakes. As long as they do not have life-threatening consequences to those decisions, there are other alternatives to help guide and protect them.

“A guardianship can be appropriate if somebody can’t recognize danger. (If) They don’t have a good sense of when they’re being exploited. But research has shown that if you give a young person, even with a cognitive disability to practice that decision-making, then, in fact, they get better at making those decisions and get a better sense of who they are and their sense of autonomy,” Zaske explained.

Swedeen said families often ask if they should go through the guardianship process first and then go to less restrictive options later, but she urged that is not recommended. She said guardianship is the most restrictive way to protect a loved one with disabilities, it costs a lot of time and money, and it can be difficult to reverse or reduce a guardianship’s restrictions after being implemented. Even if the family and individual want guardianship removed, she explained that person has already been considered legally incompetent and it is up to a judge to decide to change that label.

“So if you can start with the flexible tools and if they don’t work or if they’re not complete enough, then consider something more restrictive, that’s always going to be the easier path and the path that keeps people’s rights intact,” she said.

“I have the best parents in the world for listening to me,” Anderson smiled. He and his family decided to implement powers of attorney for medical and financial decisions, retaining Anderson’s rights, but providing him less restrictive support when he needs it.

To learn more about supportive decision-making click here. You can also register for the free Wisconsin Self-Determination Conference happening virtually Oct. 18-21, which will include in-depth explanations of options for people with disabilities who need support. Anderson will also be speaking at that conference.

Full Article & Source:

Guardianship requests decline as knowledge of alternative legal option grows

Guardianship requests decline as knowledge of alternative legal option grows

Supportive decision-making alternative helps maintain people’s rights to make decisions

By Emily Davies

AUBURNDALE, Wis. (WSAW) - In July 2020 Jordan Anderson and his twin, marked a milestone; the two turned 18 and became legal adults. It is a big day for anyone, but especially for children with disabilities and their families. Born 12 weeks early, the two have cerebral palsy.

The Auburndale family scheduled a hearing with the court that fall so Anderson’s parents could have legal guardianship over them to protect them and support them as they go through adulthood. In addition to planning for the two to graduate high school and prepare for their future, securing guardianship is an expected next step for many families who have children with disabilities.

Just before the hearing, Anderson attended a virtual conference that empowers people with disabilities called the Wisconsin Self-Determination Conference. He sat in on a session George Zaske, an attorney and member of the Wisconsin Board for People With Developmental Disabilities, led.

“That was the first time I’ve ever heard about supportive decision-making,” Anderson said. “Once I heard George say you might lose your right to vote, that really got my mind going.”

The sports, journalism, politics, and hunting enthusiast also learned guardianship could take away his right to hunt and make decisions.

“These are pretty significant decisions,” Zaske told NewsChannel 7. “A guardianship order can transfer all of the rights to a guardian and that guardianship order can stay in place for decades.”

After listening to the concerns and frustrations of individuals and families navigating the guardianship system, the Wisconsin Board for People With Developmental Disabilities worked with legislators to offer a less restrictive alternative. Wisconsin became one of the first five states in the country to enact the supportive decision-making law in 2018.

It is a legal document that gives the person with a disability or aging individual the ability to get support from people they trust in areas they need support, like making financial or medical decisions but leaves the ultimate decision about what to do in those circumstances up to that individual. It is a document that does not require the time or cost of going to court and is recognized by the State of Wisconsin.

“Without a law that is equally recognized the way guardianship is recognized, you know, families ran the risk of saying ‘yes, my family member wants supportive decision-making,’ but then going into a formal system like a school or a hospital and not having that recognized,” WBPDD’s executive director, Beth Swedeen stated.

Anderson learned all about the option a day before his guardianship hearing. The next morning as he was getting ready for school, he talked with his parents, shared his concerns, and told him about supported decision-making.

Anderson’s parents, like many other people looking to find ways to protect and support loved ones with disabilities, were told by attorneys they could either have guardianship over their son or no guardianship. When told about supportive decision-making, their attorneys said they had to do more research.

Since the law was introduced, guardianship requests have declined each year from 5,147 in 2017 to 4,146 by 2020. Zaske said there is still a lot of education need about supportive decision-making, noting that institutions like schools, medical facilities, financial institutions, and even judges are not aware of the different options.

“Until supportive decision-making came around, it (guardianship) was really the only option. It was kind of black and white and people over-protected their loved ones and checked a lot of options that are on the guardianship petition,” Zaske, a parent of a child with disabilities said.

As a parent, he recognized that you want to do everything to protect your child because they are not as supported in the adult world as they were as a child going through school. He noted just like all adults making their own decision, adults with disabilities may make mistakes. As long as they do not have life-threatening consequences to those decisions, there are other alternatives to help guide and protect them.

“A guardianship can be appropriate if somebody can’t recognize danger. (If) They don’t have a good sense of when they’re being exploited. But research has shown that if you give a young person, even with a cognitive disability to practice that decision-making, then, in fact, they get better at making those decisions and get a better sense of who they are and their sense of autonomy,” Zaske explained.

Swedeen said families often ask if they should go through the guardianship process first and then go to less restrictive options later, but she urged that is not recommended. She said guardianship is the most restrictive way to protect a loved one with disabilities, it costs a lot of time and money, and it can be difficult to reverse or reduce a guardianship’s restrictions after being implemented. Even if the family and individual want guardianship removed, she explained that person has already been considered legally incompetent and it is up to a judge to decide to change that label.

“So if you can start with the flexible tools and if they don’t work or if they’re not complete enough, then consider something more restrictive, that’s always going to be the easier path and the path that keeps people’s rights intact,” she said.

“I have the best parents in the world for listening to me,” Anderson smiled. He and his family decided to implement powers of attorney for medical and financial decisions, retaining Anderson’s rights, but providing him less restrictive support when he needs it.

To learn more about supportive decision-making click here. You can also register for the free Wisconsin Self-Determination Conference happening virtually Oct. 18-21, which will include in-depth explanations of options for people with disabilities who need support. Anderson will also be speaking at that conference.

Full Article & Source:

Guardianship requests decline as knowledge of alternative legal option grows

Another View: Empower people with disabilities to make own decisions

Maine should put less effort into fixing guardianship and more into helping people live without a guardian. 

By Kim Moody

A Nov. 10 column by Gerald Petruccelli and Bruce McGlauflin (“State of Maine is an unfit guardian for intellectually disabled adults”) rightly expressed concerns about the conflict of interest inherent in Maine’s public guardianship system.

However, the authors’ narrow focus on this one aspect of guardianship reform neglects to tell a bigger story. Current reform efforts focus on alternatives that obviate the need for guardianship and empower individuals to make their own decisions. Innovations like supported decision-making — where individuals utilize supporters to help them make decisions — are crucial in reducing the use of guardianship. Maine is embracing these reforms by incorporating supported decision-making in its 2019 Probate Code and as highlighted in this paper’s profile of Joshua Strong and subsequent editorial.

And the current administration of the Department of Health and Human Services is aware of the conflict and is addressing it while also embracing supported decision-making as an alternative.

The authors also expressed concerns that problems with public guardianship have been exacerbated by the elimination of the state-run Office of Advocacy. This assertion is unsupported. DHHS acting as public guardian unquestionably presents a conflict of interest, but so too did an advocacy unit within DHHS. And if in fact, advocates at the Office of Advocacy “substitute(d) for guardians,” as the authors wrote, that conflict was insurmountable. Disability Rights Maine, a nonprofit organization independent from the state, took over the Office of Advocacy’s work, not when the consent decree ended in 2010, as the authors indicated, but in 2012. The organization ensures that people’s individual rights are protected.

We should not be talking about making guardianship less problematic – we should be talking about making guardianship less frequent.

***

Kim Moody is executive director of Disability Rights Maine in Augusta.

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Another View: Empower people with disabilities to make own decisions

New law offers alternative to guardianship for seniors and those with developmental disabilities

ANCHORAGE (KTUU) — In a bill signing Thursday, Gov. Bill Walker created another way for a person to be helped by others besides restrictive, traditional guardianship.

In signing House Bill 336, Rep. Charisse Millett’s popular final bill, Walker created new law allowing so-called “Supported Decision-Making Agreements.”

The bill signing occurred at the Fourth Annual Disability & Aging Summit at the Special Olympics building on Mountain View Drive for a reason: Decision-Making Agreements are primarily for Alaska’s rapidly growing senior population and for people with intellectual or developmental disabilities.

In an interview, Millett, an Anchorage Republican who lost her seat to a primary challenger in the August primary, said her bill was essentially nonpartisan and was a fitting way for her to leave the Legislature. The legislative votes and long co-sponsorship list demonstrate the measure’s popularity — it passed the House 39-1 on April 14 and the Senate 19-0 on May 11.

Rep. David Eastman of Wasilla was the sole no vote. He said the bill offered too big a grant of immunity for decisions made on behalf of another. In a telephone interview, he said he was unable to amend the bill to his liking.

The bill emerged from the previous year’s disability and aging summit, according to participants. Millett had warned it might take two years for the Legislature to move such a measure, but she praised her staff and others for shrinking the time to three months and getting the bill passed last session.

The new law allows a disabled person or senior citizen to name a “supporter” or team of supporters — perhaps children, parents or friends — who would sign an agreement with the disabled person or senior naming the help that was needed.

“It could be part of anyone’s natural support network,” said Anne Applegate, an attorney on the staff of the Governor’s Council on Disabilities & Special Education.

The bill itself has several sample agreements among its 19 pages of text.

A team could agree to do something like help a senior with computers, Wi-Fi or a smartphone, Applegate said, or an agreement could focus on health care or legal advice.

In capital letters, one of the law’s sample agreements says: “A supporter appointed under this agreement does not make decisions for me.”

“It’s innovative legislation that will end up saving the state money and will allow the freedom that seniors — and folks with intellectual and development disabilities — to gauge how much support they need,” Millett said in an interview.



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New law offers alternative to guardianship for seniors and those with developmental disabilities