In the Kansas City area, self-advocates and public guardians see a
need for a more tailored approach to support adults with disabilities
by VickyDiaz-Camacho
Nicole Noblet just celebrated her 31
st birthday. She is an animal lover and athlete in the Special Olympics.
In her downtime, she uses her compassion and dedication to advocate
for people like her, who are young and living with a disability, to
better understand their options.
Although her story under guardianship was easier compared with
others, she is an avid believer in giving people a chance to choose
their own path. That begins with knowing what full guardianship is.
“I didn’t know that guardianship was so restrictive until I got involved in self-advocacy,” she said.
“I met people who had guardians that wouldn’t let them know a lot of
things, check their phone, and took their computer away as punishment.
I thought, (that) is not right because they are adults.”
When she was 24, Noblet’s mom sought guardianship after receiving
advice from a lawyer at a routine Social Security benefits appointment.
Noblet was diagnosed with autism as a child and has an intellectual
disability.
She uses a computer to speak, emoting with an emphatic head nod or a
warm smile, especially when talking about her rescue dog Pebbles.
(Unlike what his name implies, Pebbles is not small, she said, but a
cuddly Pitbull.)
But what she is most passionate about these days is being a member of People First of Missouri,
a self-advocacy group run by people with disabilities. Although she
knows her mom would not strip her of her rights, she remembers vividly
the day she signed the guardianship papers.
“The lawyer representing me didn’t really explain what having a
guardian would mean for me and my rights. He just asked if I was okay
with it,” Noblet recalled.
“I didn’t really want one, but I knew my mom wasn’t going to try to take control of my life. So, I just went along with it.”
Rethinking Guardianship
Too many stories like these exist, and many have worse outcomes.
Often, young adults with disabilities fall prey to abusive public
guardians or family members who mismanage a person’s finances, medical
needs or even hobbies.
Wires get crossed and loopholes emerge too easily, advocates and experts say.
The National Council on Disability in a 2018 report outlined the issue like this:
“Guardianship generally involves a state-court determination that an
individual lacks the capacity to make decisions with respect to their
health, safety, welfare, and/or property. Although guardianship is
governed by state law, it entails the removal of rights protected by the
U.S. Constitution.”
The National Council on Disability raised concerns with outdated and
confusing terminology that could put a person’s independence and their
rights at risk.
Using updated data and research, the study provided alternatives
that “promote self-determination.” Doing so improves not only quality of
life but also mental and health outcomes.
Recent statistics estimate that 1.3 million people in the U.S. (about
the population of New Hampshire) are under guardianship. Another survey
found that adults with intellectual disabilities and people on the
autism spectrum were more likely to have a guardian. Nearly half of the
people with IDD (intellectual and developmental disabilities) or with
autism had a guardian.
Mia Ives-Rublee, director of the Disability Justice Initiative at
American Progress, said life gets complicated for young adults with
disabilities in the legal sphere when guardianship comes into the fold.
Though a widespread problem, it is controversial in the disability
community because it restricts a person’s rights to engage in everyday
civic activities. Few families are aware.
Severe limitations on what rights a person with intellectual or
developmental disabilities is especially complex. Under guardianship,
many folks may find they are unable to vote or choose what medical care
they receive.
Self-advocates like Noblet are pushing for that to change.
“Missouri law says that before guardianship is ordered less
restrictive alternatives should be considered,” she said. “But this is
not what is happening. Lawyers need to tell the people with disabilities
they are representing what having a guardian means (in a way) they
(can) understand.”
Before Noblet moved to Missouri from Minnesota, she researched voting
laws for people under guardianship. Having the power to vote was
important to her.
It was clear that she and her mom needed to transition to a
supported-decision plan, which they had just learned about. So, she
contacted Missouri Protection & Advocacy, a nonprofit public interest law firm, to draft a supported decision-making plan.
In both Kansas and Missouri,
guardianship or conservatorship is meant to be the last resort for
families and young adults. Legal guidelines on both sides of the state
line make that clear.
Missouri’s “Adult Protective Services Policy Manual” outlines the severity of court intervention:
“A guardianship or conservatorship, while intended to be helpful, may
place the most severe restrictions on a person’s freedoms that a court
can impose. A guardianship or conservatorship should be used only as a
method of last resort and be considered only after all other lesser
restrictive alternatives have been explored.”
The Kansas Guardianship Program’s latest report uses almost the exact same language.
Less restrictive alternatives include supported decision-making. The American Civil Liberties Union has a page full of resources, with 35 links to guides, videos and cases that outline frequently-asked-questions, and advice on self-advocacy.
In short, that model allows people far more flexibility to be
independent in certain areas of daily life and get support where they
need it.
Ives-Rublee put it like this:
“Supported decision-making is actually very similar to what we, as
individuals, not on conservatorships do on an everyday basis … Checking
in with our social networks to be like, ‘Hey, what do you think about
this job that I’m about to apply to?’ Or ‘Do you think I should really
buy this expensive car that I’m only going to use, you know, twice a
year?’”
“Supported decision-making … prioritizes the individual’s wants and needs in helping and having a support network around them.”
‘We Are Not Told’
Even public administrators who serve as public guardians agree that
this model is important, but not often presented during the transition
from high school to graduation.
Enter John Pruitt Killian, who is a public administrator in Jackson
County, Missouri. Killian’s caseload includes elderly folks, people with
mental illness and substance abuse disorders, and those with
intellectual or developmental disabilities — or IDD.
A smaller percentage are young adults in the IDD category.
“Our younger people that we see, they tend to come to us, either
without families, or may be coming through the children’s division.
Really, they have gone through juvenile court,” Killian said.
Studies have shown the school-to-prison pipeline is especially
prominent among youth with disabilities, and students of color are
overrepresented. They are under-diagnosed but still face harsh
disciplinary actions on school grounds.
A National Council on Disabilities report
from several years ago found that 85% of youth in the juvenile system
were eligible for special education services, but only 37% received
those services.
Killian agreed that the communication breakdown in schools causes a
larger ripple effect than is necessary. It is also not a
one-size-fits-all approach, but that is how it is presented.
“We are not told what our options are and immediately out of high
school,” Noblet said. “We are told — and our parents are told — to get
guardianship as a way to protect us.”
Even from a public administrator’s perspective, guardianship court
proceedings are an “arduous process.” He said it is like a criminal
case.
“Because you’re trying to prove that someone’s rights should be taken
away from them or taking away their liberty. And it’s a very serious
thing,” he said.
Cases also impose financial burdens. On average, lawyer fees can run
upwards of $1,500. The cost of a medical opinion, where a physician
would write a letter of diagnosis and testify in court, can be more than
$1,000.
Then there is the cost of time. These processes can last more than
three months, with a slew of hearings. The person with a disability and
family must be present, though some court hearings have moved to Zoom.
The issue is one of accessibility — in terms of time, finances and
education. Experts point to a need for better listening and empowering
members of disabled communities to assert what they want. This starts in
the classroom and should continue with social workers well into young
adulthood.
“There are ways to provide those supports without taking away all the
individual’s rights to make decisions based on their own preferences,”
Ives-Rublee said.
“The system sort of creates a trap in itself, of keeping people poor
and unable … to expand or become independent because of how burdensome
these systems can be for individuals.”
Killian believes there is a need for teachers, social workers, and
case managers to be on the same page to better support families in the
region on a case-by-case basis.
Guardianship is a spectrum, with varying degrees of restrictions.
For some, the person is provided with the support their families
could not provide. For others, it provides a safety net to help guide
them to make informed decisions.
Killian, who operates with a focus on supported decision-making for
all his cases, has several clients who have thrived under his oversight.
Plus, he says, guardianship should not be the be-all and end-all.
He and his colleagues try to tailor services to their clients’ needs.
If that means removing or scaling back guardianship oversight, he will
file what is called a restoration.
“I would say from my office, we’re as aggressive as anybody in filing
restorations and trying to get folks … out of the guardianship when we
can,” he said. “The other part of the story is this: There are people
that are in real need, and there aren’t other people to take care of
them.”
He added: “I feel like my job is to implement their wishes.”
For self-advocates, the hope is that disability rights leaders,
educators and case workers can better inform folks about what options
are out there. This can change how folks interact with them and see
them.
When Noblet was asked what else matters to her she said:
“Having people respect me and talk to me at the doctor’s office about
my own health instead of looking at my mom, as if she needs to make
decisions about my medical treatments or if she has the answer for what
is happening in my body.”
Finding resources is difficult enough in high school, not to mention
following the post-graduation cliff. Tailored plans are key to setting
up young adults with disabilities for success and independence.
That means being provided with all the tools possible.
Now 31, Noblet is determined to raise awareness for young adults with
various disabilities to live an independent, fulfilling life. She is
paying attention, taking classes and taking notes.
“We are seen as vulnerable and not capable of making decisions, but
the thing that makes people with disabilities vulnerable is a lack of
education,” Noblet said.
Full Article & Source:
Young Adults with Disabilities Want Independence. Guardianship Is a Hurdle.
