ASNP Panel: 'Freedom to Choose' in Supported Decision Making

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<img alt="Jonathan Gardner, far right, speaks alongside fellow panelists on supported decision making at the ASNP National Meeting in Boston." src="https://cdn.elderlawanswers.com/common/uploads/photos/19712-IMG_2383 Panel with Jonathan.jpg" style="float:right; height:200px; margin-left:10px; margin-right:10px; width:267px" />Jonathan Gardner, a vibrant and witty 20-year-old from Massachusetts who loves video games and professional wrestling, found himself amid the chaos and uncertainty of the pandemic facing a rare cancer diagnosis. As an individual with autism, Gardner may have been subject to the decisions of a guardian or conservator when it came to his medical care. He had, after all, been told as a teenager that he should be under full guardianship due to his disability. Fortunately, with the help of family members, health care providers, and professionals whom Gardner had specifically chosen to serve as part of his support team, he was the one who ultimately held the power to make the very personal decisions regarding how and when he would receive his treatments. “I was able to let my body and voice guide me, with the help of my support,” he said at a recent Academy of Special Needs Planners panel held in Boston. “I was able to control when and how I would go through it.” According to Gardner, this “freedom to choose” during his cancer journey was nothing short of lifesaving. <h2>A Decision-Making Alternative for People With Disabilities</h2> Alongside three other panelists at the ASNP 2023 National Meeting session, titled “Decision-Making Alternatives for Persons With Disabilities,” Gardner gave a firsthand glimpse into what it meant for him to be able to pursue supported decision making, an option that has been growing in popularity among individuals with disabilities and their families across the country. While plenary guardianships and conservatorships have long been what fellow panelist Anna Krieger described as the “default option” for many individuals across the disability community, the tide is changing. Unlike full or even limited guardianship or conservatorship, <a href="https://specialneedsanswers.com/supported-decision-making-as-an-alternative-to-guardianship-19191" target="_self">supported decision making</a> is a much less restrictive alternative to these arrangements. “It’s a way of making decisions where a person with a disability or an older adult chooses a group of trusted supporters to help them with making, understanding, and communicating decisions,” said Krieger, executive director of the Massachusetts Advocates for Children and a member of Gardner’s own support team. “The key ingredient,” she said, “is trust. The other is that the person with the disability really has to be able to express their will and preferences in some way that the other people can understand.” <h2>‘The Heart of Any Decision’</h2> As panelist and attorney Daryl Cameron Every put it, “at the heart of any decision is capacity.” “For professionals in the special needs field, we know every day and are acutely aware of the needs of our clients, and their need for us to help them effectuate what their vision is for their life,” she said. “We take that to heart. … It’s very important that we are aware of capacity with our own clients and also concerning any of the individuals they want included in their estate documents or in their life planning.” Board certified clinical neuropsychologist Jeffrey Long, also on the panel, plays a pivotal role in the lives of individuals facing potential guardianship. In carrying out comprehensive clinical evaluations of patients, he gathers the data needed to evaluate an individual’s decision-making ability and recommend whether that person may benefit most from guardianship, conservatorship, or another, less restrictive, alternative. “Capacity and disability aren’t interchangeable concepts,” Long said. “Just because you’re a person with autism, or have an intellectual disability or dementia, doesn’t mean that you lack capacity. Even in my profession, people will jump to that conclusion and automatically recommend guardianship without exploring [alternatives].” As part of his clinical evaluations, Long considers everything from an individual’s attention, memory, language, and judgment abilities to their academic function (for instance, math and reading skills) and adaptive function (the ability to manage self-care and daily household tasks). In addition, he examines the individual’s network of family, friends, health care professionals, and community resources, as well as the person’s own preferences and values. Together, all of this information helps him develop a holistic understanding of the individual. “Part of what I do is to evaluate, try to get an understanding of the reasoning behind a person’s decision,” he said. “How do they weigh the information? Do they look at the cost and benefits? How are they communicating with other people in order to make those types of decisions? And then finally, the ability to communicate the decision in some way.” <h2>A Reasonable Accommodation</h2> Nationally, more states have been formally recognizing supportive decision making and passing laws that specifically define it, said Krieger, the attorney whose clients include Gardner. “The key thing from the advocates’ perspective is it also makes it more formal and acceptable for third parties, particularly medical providers.” The idea behind supported decision making is to involve multiple people whom the individual trusts and who will help them develop in their path to self-determination. “Think of supportive decision making as an accommodation,” she said. “It’s an accommodation for how you might need additional support in order to make decisions.” For Gardner, supportive decision making made all the difference. Today, not only is he a cancer survivor, but he also serves as a public speaker, advocate, member of the Massachusetts Developmental Disabilities Council, co-chair of the Massachusetts Decision Coalition, and ambassador for Operation House Call through the Arc of Massachusetts. “Guardianship would’ve been worse than death because I would’ve lost choice. If I was not able to pick my support people during my cancer treatment, I would’ve been just a shell of myself,” he said. “Decision making offers more options in life. … Everyone should have the right to choose the way they want to live so they can live their best lives to the fullest. The more choices, the better – It is something I think we all can agree on.” Questions? Call us: (866) 296-5509

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Jonathan Gardner, far right, speaks alongside fellow panelists on supported decision making at the ASNP National Meeting in Boston. Jonathan Gardner, a vibrant and witty 20-year-old from Massachusetts who loves video games and professional wrestling, found himself amid the chaos and uncertainty of the pandemic facing a rare cancer diagnosis.

As an individual with autism, Gardner may have been subject to the decisions of a guardian or conservator when it came to his medical care. He had, after all, been told as a teenager that he should be under full guardianship due to his disability.

Fortunately, with the help of family members, health care providers, and professionals whom Gardner had specifically chosen to serve as part of his support team, he was the one who ultimately held the power to make the very personal decisions regarding how and when he would receive his treatments.

“I was able to let my body and voice guide me, with the help of my support,” he said at a recent Academy of Special Needs Planners panel held in Boston. “I was able to control when and how I would go through it.”

According to Gardner, this “freedom to choose” during his cancer journey was nothing short of lifesaving.

A Decision-Making Alternative for People With Disabilities

Alongside three other panelists at the ASNP 2023 National Meeting session, titled “Decision-Making Alternatives for Persons With Disabilities,” Gardner gave a firsthand glimpse into what it meant for him to be able to pursue supported decision making, an option that has been growing in popularity among individuals with disabilities and their families across the country.

While plenary guardianships and conservatorships have long been what fellow panelist Anna Krieger described as the “default option” for many individuals across the disability community, the tide is changing.

Unlike full or even limited guardianship or conservatorship, supported decision making is a much less restrictive alternative to these arrangements. “It’s a way of making decisions where a person with a disability or an older adult chooses a group of trusted supporters to help them with making, understanding, and communicating decisions,” said Krieger, executive director of the Massachusetts Advocates for Children and a member of Gardner’s own support team.

“The key ingredient,” she said, “is trust. The other is that the person with the disability really has to be able to express their will and preferences in some way that the other people can understand.”

‘The Heart of Any Decision’

As panelist and attorney Daryl Cameron Every put it, “at the heart of any decision is capacity.”

“For professionals in the special needs field, we know every day and are acutely aware of the needs of our clients, and their need for us to help them effectuate what their vision is for their life,” she said. “We take that to heart. … It’s very important that we are aware of capacity with our own clients and also concerning any of the individuals they want included in their estate documents or in their life planning.”

Board certified clinical neuropsychologist Jeffrey Long, also on the panel, plays a pivotal role in the lives of individuals facing potential guardianship. In carrying out comprehensive clinical evaluations of patients, he gathers the data needed to evaluate an individual’s decision-making ability and recommend whether that person may benefit most from guardianship, conservatorship, or another, less restrictive, alternative.

“Capacity and disability aren’t interchangeable concepts,” Long said. “Just because you’re a person with autism, or have an intellectual disability or dementia, doesn’t mean that you lack capacity. Even in my profession, people will jump to that conclusion and automatically recommend guardianship without exploring [alternatives].”

As part of his clinical evaluations, Long considers everything from an individual’s attention, memory, language, and judgment abilities to their academic function (for instance, math and reading skills) and adaptive function (the ability to manage self-care and daily household tasks). In addition, he examines the individual’s network of family, friends, health care professionals, and community resources, as well as the person’s own preferences and values.

Together, all of this information helps him develop a holistic understanding of the individual.

“Part of what I do is to evaluate, try to get an understanding of the reasoning behind a person’s decision,” he said. “How do they weigh the information? Do they look at the cost and benefits? How are they communicating with other people in order to make those types of decisions? And then finally, the ability to communicate the decision in some way.”

A Reasonable Accommodation

Nationally, more states have been formally recognizing supportive decision making and passing laws that specifically define it, said Krieger, the attorney whose clients include Gardner. “The key thing from the advocates’ perspective is it also makes it more formal and acceptable for third parties, particularly medical providers.”

The idea behind supported decision making is to involve multiple people whom the individual trusts and who will help them develop in their path to self-determination. “Think of supportive decision making as an accommodation,” she said. “It’s an accommodation for how you might need additional support in order to make decisions.”

For Gardner, supportive decision making made all the difference. Today, not only is he a cancer survivor, but he also serves as a public speaker, advocate, member of the Massachusetts Developmental Disabilities Council, co-chair of the Massachusetts Decision Coalition, and ambassador for Operation House Call through the Arc of Massachusetts.

“Guardianship would’ve been worse than death because I would’ve lost choice. If I was not able to pick my support people during my cancer treatment, I would’ve been just a shell of myself,” he said.

“Decision making offers more options in life. … Everyone should have the right to choose the way they want to live so they can live their best lives to the fullest. The more choices, the better – It is something I think we all can agree on.”

<img alt="Jonathan Gardner, far right, speaks alongside fellow panelists on supported decision making at the ASNP National Meeting in Boston." src="https://cdn.elderlawanswers.com/common/uploads/photos/19712-IMG_2383 Panel with Jonathan.jpg" style="float:right; height:200px; margin-left:10px; margin-right:10px; width:267px" />Jonathan Gardner, a vibrant and witty 20-year-old from Massachusetts who loves video games and professional wrestling, found himself amid the chaos and uncertainty of the pandemic facing a rare cancer diagnosis. As an individual with autism, Gardner may have been subject to the decisions of a guardian or conservator when it came to his medical care. He had, after all, been told as a teenager that he should be under full guardianship due to his disability. Fortunately, with the help of family members, health care providers, and professionals whom Gardner had specifically chosen to serve as part of his support team, he was the one who ultimately held the power to make the very personal decisions regarding how and when he would receive his treatments. “I was able to let my body and voice guide me, with the help of my support,” he said at a recent Academy of Special Needs Planners panel held in Boston. “I was able to control when and how I would go through it.” According to Gardner, this “freedom to choose” during his cancer journey was nothing short of lifesaving. <h2>A Decision-Making Alternative for People With Disabilities</h2> Alongside three other panelists at the ASNP 2023 National Meeting session, titled “Decision-Making Alternatives for Persons With Disabilities,” Gardner gave a firsthand glimpse into what it meant for him to be able to pursue supported decision making, an option that has been growing in popularity among individuals with disabilities and their families across the country. While plenary guardianships and conservatorships have long been what fellow panelist Anna Krieger described as the “default option” for many individuals across the disability community, the tide is changing. Unlike full or even limited guardianship or conservatorship, <a href="https://specialneedsanswers.com/supported-decision-making-as-an-alternative-to-guardianship-19191" target="_self">supported decision making</a> is a much less restrictive alternative to these arrangements. “It’s a way of making decisions where a person with a disability or an older adult chooses a group of trusted supporters to help them with making, understanding, and communicating decisions,” said Krieger, executive director of the Massachusetts Advocates for Children and a member of Gardner’s own support team. “The key ingredient,” she said, “is trust. The other is that the person with the disability really has to be able to express their will and preferences in some way that the other people can understand.” <h2>‘The Heart of Any Decision’</h2> As panelist and attorney Daryl Cameron Every put it, “at the heart of any decision is capacity.” “For professionals in the special needs field, we know every day and are acutely aware of the needs of our clients, and their need for us to help them effectuate what their vision is for their life,” she said. “We take that to heart. … It’s very important that we are aware of capacity with our own clients and also concerning any of the individuals they want included in their estate documents or in their life planning.” Board certified clinical neuropsychologist Jeffrey Long, also on the panel, plays a pivotal role in the lives of individuals facing potential guardianship. In carrying out comprehensive clinical evaluations of patients, he gathers the data needed to evaluate an individual’s decision-making ability and recommend whether that person may benefit most from guardianship, conservatorship, or another, less restrictive, alternative. “Capacity and disability aren’t interchangeable concepts,” Long said. “Just because you’re a person with autism, or have an intellectual disability or dementia, doesn’t mean that you lack capacity. Even in my profession, people will jump to that conclusion and automatically recommend guardianship without exploring [alternatives].” As part of his clinical evaluations, Long considers everything from an individual’s attention, memory, language, and judgment abilities to their academic function (for instance, math and reading skills) and adaptive function (the ability to manage self-care and daily household tasks). In addition, he examines the individual’s network of family, friends, health care professionals, and community resources, as well as the person’s own preferences and values. Together, all of this information helps him develop a holistic understanding of the individual. “Part of what I do is to evaluate, try to get an understanding of the reasoning behind a person’s decision,” he said. “How do they weigh the information? Do they look at the cost and benefits? How are they communicating with other people in order to make those types of decisions? And then finally, the ability to communicate the decision in some way.” <h2>A Reasonable Accommodation</h2> Nationally, more states have been formally recognizing supportive decision making and passing laws that specifically define it, said Krieger, the attorney whose clients include Gardner. “The key thing from the advocates’ perspective is it also makes it more formal and acceptable for third parties, particularly medical providers.” The idea behind supported decision making is to involve multiple people whom the individual trusts and who will help them develop in their path to self-determination. “Think of supportive decision making as an accommodation,” she said. “It’s an accommodation for how you might need additional support in order to make decisions.” For Gardner, supportive decision making made all the difference. Today, not only is he a cancer survivor, but he also serves as a public speaker, advocate, member of the Massachusetts Developmental Disabilities Council, co-chair of the Massachusetts Decision Coalition, and ambassador for Operation House Call through the Arc of Massachusetts. “Guardianship would’ve been worse than death because I would’ve lost choice. If I was not able to pick my support people during my cancer treatment, I would’ve been just a shell of myself,” he said. “Decision making offers more options in life. … Everyone should have the right to choose the way they want to live so they can live their best lives to the fullest. The more choices, the better – It is something I think we all can agree on.”

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ASNP Panel: 'Freedom to Choose' in Supported Decision Making

A Decision-Making Alternative for People With Disabilities

‘The Heart of Any Decision’

A Reasonable Accommodation

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