Empowering Choice: How Supportive Decision-Making Helps People Thrive
Mosaic’s mission is to relentlessly pursue opportunities that empower people. But what does empowerment actually look like?
It begins with supporting individuals with intellectual and developmental disabilities (IDD) and other diverse needs to make their own decisions, because everyone deserves a say in their own lives. When they ask for guidance or support, we lend an ear or provide resources that help them make their own decisions, a practice known as supportive decision-making.
As services for individuals with intellectual and developmental disabilities and other diverse needs evolve, providers like Mosaic are focused on walking alongside the individuals we support rather than making decisions on their behalf.
Ione Johnson, Associate Vice President of Service Excellence at Mosaic, said supportive decision-making is becoming a gold standard in the IDD industry and is a key component of Mosaic’s personalized services model, where we see people as unique and worthy of dignity and respect. By listening to and learning about their perspectives and preferences, Mosaic empowers them to lead meaningful lives on their own terms.
Johnson said that all of us, at some point in our lives, will use supportive decision-making. When faced with a decision, we talk with spouses, family members, friends, coworkers, doctors, or lawyers, and, for the most part, they leave the final decision to us. That’s not always the case for individuals with IDD because of questions about their ability to make decisions.
It’s important to approach people with disabilities like anyone else, without assuming they can’t do something. Be there to listen and, if asked, offer resources and answer questions.
“Just because someone has a disability doesn’t mean they shouldn’t have the same opportunity to make a decision about their own life,” Johnson said. “Even if they seek guidance and support, the final decision should be theirs to make.”
Treating people with respect
Johnson said the role of caregivers, parents, guardians, family members, and other supporters is not to create a life for them free of all risk, but to help them by providing information so they can make informed decisions.
A supportive decision-making approach, Johnson said, is about treating people with respect.
“We all learn through decision-making, and if they don’t have the opportunity to do that and to take risks, they’re never going to grow,” she said. “I always try to put myself in the shoes of the person we’re supporting, and ask myself what I would feel like if people were telling me I had to do all these things that I really don’t like, or I can’t do something that I really want to do.”
Johnson acknowledged that guardians often face the incredibly difficult responsibility of balancing a loved one’s health and safety with their preferences and desire to direct their own life. She said the role of a guardian is not simply to make decisions for someone, but to make decisions with careful consideration of the person’s wishes, values, and history. Supporting someone doesn’t mean choosing between dignity and safety. It means working intentionally to preserve both.
“Supportive decision-making begins with the assumption that every person has a voice, even if that voice isn’t expressed through spoken language,” she said. “Understanding a person’s communication style, history, relationships, and preferences is essential to understanding what they want for their own life. The absence of spoken language is not the absence of a voice. It is an invitation for us to find a different way to listen.
For example, she recalls an instance in which a person who struggled with communication made it clear through their behavior that they didn’t like living in a group setting. But their family was hesitant to move the individual into a shared-living home because they didn’t think their behavior would be well-suited to that setting.
“Mosaic staff began paying attention to when and why they were acting out,” Johnson said. “Eventually, everyone came to the same conclusion, and the person moved to shared living.”
Shared living is when a person receives support in a Home Provider’s residence, rather than in a group setting or institution. Mosaic’s shared living program is called Mosaic at HomeⓇ, and it is our largest 24-hour residential service offering.
“All the behaviors the staff and family were seeing went away,” Johnson said. “The person was happy.”
Johnson says that is what supported decision-making is all about, asking, ‘What matters most to this person?’ instead of ‘What do I think is best for this person?’
Lawmakers address supported decision-making
Supported Decision-Making is not a type of guardianship, Johnson said, but advocates believe the method, which is less restrictive for people who need help but don’t want to give up control, should be considered before getting someone a guardian.
According to the Center for Public Representation (CPR), a national legal advocacy center for people with disabilities, supported decision-making is being formally recognized in the laws of more states. At least 40 states and the District of Columbia, including several in Mosaic’s network, have passed legislation referring to it in various ways.
Earlier this year, Kansas updated its guardianship laws to give people with disabilities more rights, control and choices. Updates include a stipulation that courts must first consider alternatives to guardianship, such as supported decision-making.
The law moves Kansas toward a more person-centered system, which advocates say increases self-esteem and self-worth, reduces the stigma and shows that individuals with disabilities are capable of contributing to society because they are in charge of their own lives.
Depending on the laws in their state, an individual may be able to try out supported decision-making under guardianship, according to the CPR. But, before taking that step, the individual, guardian and supporters should have a conversation. This resource offers information for the group to consider.
As we did in Kansas, Mosaic continues to visit with state and federal representatives in our multi-state network to advocate for legislation that expands the rights of people with disabilities. We encourage others to join our efforts. Visit MosaicAlliedVoices.org to sign up as a volunteer.
The value of community support
As individuals supported by Mosaic become more active in their communities, Johnson said, people are becoming more aware of what they can do, rather than what they can’t.
“The biggest barrier to people with disabilities being able to make good decisions is not their disability, it’s people’s assumption that they can’t participate in decision-making,” she said. “Over time, as more people engage with individuals with disabilities, they will start to see that’s not true and why supported decision-making is important.”
To locate services near you, visit Find Services.