Port St. Lucie cooking class helps adults with disabilities build skills, independence

 The participants are part of the Legal Aid Society of Palm Beach County’s Guardian Advocacy Program, which provides guardianship support to people with developmental disabilities

By: Brooke Chau 

PORT ST. LUCIE, Fla. — A recent cooking class in Port St. Lucie is helping adults with intellectual and developmental disabilities learn valuable life skills and gain more independence.

The participants are part of the Legal Aid Society of Palm Beach County’s Guardian Advocacy Program, which provides guardianship support to people with developmental disabilities.

Some of the participants are young adults who have aged out of foster care and don't have family members to rely on for support.

Through a partnership with GL Homes that has lasted nearly a decade, participants are given hands-on experiences and opportunities to develop skills that can help them in everyday life.

During the latest class in October, participants learned how to prepare a healthier meal, with Mediterranean chicken on the menu.

From chopping vegetables and preparing ingredients to following a recipe and practicing kitchen safety, the lesson was about more than just cooking.

Brooke Chau, WPTV

Organizers say the goal is to give participants experiences and opportunities that are often not readily available to them while helping them become more self-sufficient.

"We wanted to give them these experiences that they just don't have and the rest of us take for granted," said Sarah Alsofrom, Vice President of Community Relations at GL Homes.

Jessica Kelson with the Legal Aid Society of Palm Beach County says watching participants learn new skills and take part in activities can make a meaningful difference.

"Being able to watch them learn a new skill or participate in something that's not typically offered to them is just really heartwarming and nice to see them be able to grow," Kelson said.

Brooke Chau, WPTV

By the end of the class, participants had prepared their meal and sat down to enjoy what they made.

For one participant, the accomplishment was something to be proud of.

"I'm proud of it," she said. "I am going to try this at home."

Organizers hope these experiences will give participants the confidence and practical skills to take greater control of their daily lives — one meal at a time.

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Port St. Lucie cooking class helps adults with disabilities build skills, independence 

How can seniors with cognitive impairment keep their independence?

More and more experts are pushing for less restrictive alternatives to drastic legal action such as guardianships

by Marilyn Perkins

America’s population is aging. The U.S. Census Bureau predicts that, by 2034, there will be more adults over 65 than children, and The Administration for Community Living projects the number of seniors over 85 will double between 2020 and 2040.

With that shift will come more people than ever being diagnosed with dementia and cognitive impairment-causing conditions such as Alzheimer’s disease. Nearly one out of every three seniors over the age of 85 has Alzheimer’s dementia, and the annual incidence of Alzheimer’s is projected to double by 2050.

These conditions cause a person’s decision-making abilities to deteriorate, making it increasingly difficult to manage personal, financial and health care affairs independently. In these cases, legal interventions — often in the form of full or partial guardianships — can come into play.

But a growing number of physicians, lawyers and policymakers are bringing attention to how drastic legal action such as guardianships can put seniors’ livelihood and well-being at stake, and they’re pushing for less restrictive alternatives. One of those alternatives is a framework called supported decision-making.

“When I think about something like Alzheimer's disease, I think of it as a disease of autonomy,” says Emily Largent, a professor of medical ethics and health policy at the University of Pennsylvania and proponent of supported decision-making.

“It affects people's ability to make decisions about what's important to them,” she continues. “One of my big concerns is that when we look at tools like guardianship, we're stripping people of decision-making authority prematurely.”

She explains that, in supported decision-making, an adult with cognitive impairment relies on a trusted person or group to assist them through choices around finances, health care, housing or any other complex issues in their lives. It can include assistance in understanding information, communicating preferences, exploring alternatives and considering potential consequences. Supporters may include family members, friends, advocates or professionals who work collaboratively with the person to enable them to exercise their decision-making autonomy. The process emphasizes that, at the end of the day, it’s the individuals’ decision, rather than a guardian’s.

“Even though somebody's helping them, they retain the power over their own life,” says Largent.

The framework also lies in contrast to surrogate decision-making, an alternative to guardianship in which someone is authorized to make decisions on behalf of another person deemed incapable of making those decisions themselves.

The problem with guardianship

Guardianship came to the national forefront in 2021, when the #FreeBritney movement highlighted the alleged abuse in pop star Britney Spears’ conservatorship imposed over her mental health issues. Spears detailed the far-reaching control over her personal and professional life she endured during a widely watched trial that resulted in her release from the conservatorship.

But while Spears’ high-profile case revealed the reality of guardianship exploitation to a larger audience, it wasn’t representative of what most guardianships look like. The majority of people in guardianships are elderly, residing in health care facilities with some degree of cognitive impairment.

While full or partial guardianships can be necessary and even helpful for seniors with dementia, they can also open a door to abuse and exploitation, and can make people feel that they’re losing what little sense of self they have left.

“This is an issue of the most important fundamental rights: What it means to be a person, to make decisions about your life, about your health care, about where you live, what happens with your possessions, your money, who you see,” says Karen Buck, executive director of the SeniorLAW Center. “Every aspect of your life is potentially at risk with guardianship.”

Valerie Snow, an attorney with SeniorLAW Center who represents adults in guardianships or facing guardianship petitions, says that ageism is a big factor in why the mistreatment of seniors in guardianships has gone overlooked for so long.

“Older people are often ignored and devalued,” agrees Buck. “Their voices are unheard.”

Supported decision-making

Supported decision-making was first introduced as a way for young adults with developmental disorders such as Down Syndrome to avoid lifelong guardianships. Researchers like Largent are still working to adapt the approach for seniors living with cognitive impairment and dementia, as most studies conducted so far have focused only on younger adults.

“The studies that have been done with these younger adults, generally speaking, have found that they feel happier, more independent, they have greater self confidence, and they have a greater sense of control over what happens to them,” says Largent.

The pilot projects also show a much lower potential for abuse and exploitation compared to guardianship.

However, supported decision-making for seniors still faces a number of challenges. Compared to younger adults with developmental disabilities, cognitive abilities in older adults are less stable. A person who has Alzheimer’s disease may experience poor memory one day, clarity the next; and ultimately, their memory will likely deteriorate over time.

That means supported decision-making strategies for older adults need to be flexible day-by-day, and perhaps transition into guardianships over time.

Proponents of supported decision-making also admit that it isn’t a solution for everyone. For those with severe cognitive impairment or dementia, guardianship or surrogate decision-making might be the only option.

Still, a physician and director of the Penn Memory Center Jason Karlawish emphasizes the importance of pursuing arrangements that let seniors with cognitive impairment keep their autonomy.

“Guardianship is a method of last resort,” says Karlawish. “It's a tool that should be in the toolbox, but it should be used with great care and caution.”

And like successful guardianship, supported decision-making requires a person to have someone in their life who, in the words of Karlawish, is “trustworthy, reliable and accessible.”

Karlawish cautions that finding that balance can be difficult, even with spouses and adult children.

Legal status

As of 2023, over a dozen states, including California, Texas and the District of Columbia, legally recognize supported decision-making. In Pennsylvania, it remains an informal mechanism.

Largent says it’s still possible to informally develop a supported decision-making arrangement for seniors, but that privacy-oriented institutions like banks and health care providers may not recognize it.

For anyone considering a supported decision-making arrangement — or any other alternative to guardianship — for themselves or a loved one, Snow recommends planning ahead as much as possible.

“Putting the person in the driver's seat is the most important thing you can do,” she says. “If you don't plan ahead, you might end up under a guardianship where you are not in the driver's seat, and you have very little agency over these big things that affect you.”

While the state doesn’t have any supported decision-making laws on the books, Pennsylvania representatives are on the forefront of the national stage for guardianship reform. Senators Bob Casey and John Fetterman recently introduced a bill to standardize the nation’s patchwork of guardianship laws and push for less-restrictive alternatives like supported decision-making.

Karlawish says he thinks it’s time for the legal and medical framework that helps seniors with cognitive impairment maintain their autonomy to expand. He points back to a similar moment in the late 1980s and early ’90s, when new technologies such as life support systems allowed doctors to prolong the lives of patients who once would have died.

From this explosion in medical technology came legal frameworks like surrogate decision-making and living wills. “That took away a lot of ethical dilemmas and anxieties that dominated medicine in the late 20th century,” explains Karlawish.

Now Karlawish says it’s once again time for policy to catch up to medicine. As lifespans stretch and treatments for dementia cause seniors to live with mild cognitive impairment for longer, he believes supported decision-making will be more relevant than ever.

Largent agrees. “I think we should really keep people empowered as long as possible — and this is a way of doing that.”

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How can seniors with cognitive impairment keep their independence?

My mother told me to let her die rather than let her live in a wheelchair

My mother thought limited mobility would end her independence. But her life is still full of love.

My mother didn’t want to live if she had to use a wheelchair. But things change.

The night before my mother had her knees replaced almost 15 years ago, she took me aside. “If I end up in a wheelchair,” she said, “I want you to promise you will have them pull the plug.”

My mother was 75. She had five children, nine grandchildren and a husband of 55 years who still wrote love poems for her. She was frightened, vulnerable, unable to imagine a life worth living if she couldn’t walk. Fiercely independent her whole life, she’d agreed to surgery in the first place only because my sister, a physician, warned her that without it she was headed to a wheelchair.

“Promise me,” she said through tears. “I can’t live in a wheelchair.”

I was taken aback, surprised that she’d rather die than adapt, and hurt that her personal calculus devalued maximizing time with those who love her.

Neither of us were our best selves.

“No,” I said, “I won’t promise. Besides, there’d be no plug to pull.”

The surgery was excruciatingly painful but a success, leaving my mother ornery for a time but on the mend. Only afterward did the surgeon tell her that knee replacement is one of the most painful operations.

For two months, my parents lived in our downstairs den as my mother slowly recovered. She was diligent about her physical therapy. With my mother using crutches, we ventured first to the corner, then, with a cane, to the coffee shop, and finally, just before my parents returned home, we walked to the synagogue three blocks away for my daughter’s bat mitzvah. Before the surgery, my mother could not climb the curb from street to sidewalk without wincing in pain. Now she walked up a full flight of concrete stairs to the sanctuary inside.

Today my mother is 89. Her knees don’t hurt, but other parts do, and her heart, grown softer and sweeter over the years, has weakened. After months of resistance, she uses a walker even to traverse the short distance from her bedroom to her living room in the independent living facility in California where she now lives. She has recalibrated her understanding of dependence and independence, and, given the choice between staying home or using a wheelchair in the airport, she chooses the wheelchair and the chance to travel.

This travel — to a grandson’s college graduation in Chicago, a granddaughter’s graduation in Maine, another granddaughter’s graduation in  Atlanta — is not the travel she did with my father, the returning GI she met in 1946 at age 19 in engineering school. They traveled together to Europe, China, various states. Neither is it the business travel to Japan and Russia she undertook while managing international fusion research projects for the U.S. Energy Department. But it is travel nonetheless.

A few years after my mother had her knees replaced, my father started to suffer from dementia and Parkinson’s disease, and my mother (eventually with round-the-clock help) kept him at home longer than seemed possible to my siblings and me. When we finally moved my father to a nursing home in 2013, my sister and I, wanting to introduce and honor the man beneath the disease, made a sign for his door that read: “Husband. Father of five. Grandfather of 12. Retired nuclear engineer. Fluent in five languages. Philosopher. Poet.”

My father died in his sleep a few months later. By then, my mother had weathered his frustration and anger at knowing, helplessly, that his mind was slipping away. When that awareness vanished, leaving him gentle and serene, my mother preserved his dignity with attentive home caretakers who treated him with respect, even affection.

The man my father had been would have been appalled at the man he had become, incapable of navigating his way from the start of a simple sentence to the end, too unsteady to have much use for his walker, unable to groom himself. He would not have wanted to live in such a state. But the man he had become suffered no pain. Loved and loving his entire life, his face exploded with a smile at the sight of my mother or one of his children. Sometimes my mother’s daily visit to the nursing home consisted of little more than holding the hand of the husband who, in a poem, once described happiness as the moment she came home. His life still had value, for him and us.

Every year for the past several years, I have taken my mother to New York, where she grew up.

Together, we visit the Museum of Modern Art, the Museum of the City of New York and the Jewish Museum. In every museum, I check my mother’s walker and borrow a wheelchair. We go to a Broadway show and eat at a restaurant next to the theater because, despite the walker, my mother no longer has the strength to walk more than half a block without resting. We don’t venture more than a few doors from the hotel when we go out for breakfast.

“Next time,” I said to my mother as our last visit drew to a close, “let’s rent a wheelchair so I can take you to Central Park.”

More grateful now for what she can do than mournful over what she can’t, my mother said, “Okay.”

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My mother told me to let her die rather than let her live in a wheelchair