Lessons from the Kibu Roundtable: Aging and Times of Transition

What providers from 35 states shared about supporting people with IDD from high school through retirement

Near the end of our September roundtable, Lisa Wright from Little City said, "Our individuals are not infants. They're full-grown people that just do things differently than you do." By then, hundreds of people from provider organizations across the country had spent an hour talking about what support looks like at every stage of adult life. Lisa's comment summed up what many of them had been saying.

On September 22, we hosted our second Kibu Customer Roundtable. About 240 people registered, with providers joining from 35 states. The group included DSPs, program managers, directors, and executives. Many were hearing how organizations like theirs handle the same problems.

We started the roundtable series to give providers a place to connect, compare notes, and work through challenges with peers and mentors. The first session this summer went well enough that we're now holding it every quarter, and ideas from that session have already become part of the Kibu community. Attendees asked for more ways to stay connected, which led to the biweekly staff case consult (every other Wednesday at 3:30 CT) and the Kibu Provider Facebook group.

Meet the panelists

This session's theme was aging and transition, so we invited three panelists who each work closely with a different stage of adult life.

Ernell Thacker, President of the Hunter-Rogers Corporation, works with people of all ages but focused on young people moving from high school into adulthood for the discussion. Her team focuses on employment readiness, self-advocacy, independent living, and the everyday skills that make community life possible, like managing a schedule or understanding money.

Lisa Wright, Assistant Director of the Grayslake Center (CDS) at Little City, supports adults of all ages but was brought on to speak on adults in their 30s, 40s, and 50s. Her team helps people keep the skills they already have and bring back ones they haven't used since school. They also support adults who spent years at home without knowing that adult services existed.

Ana Aguilar, Director of Adult Day Services at the Block Institute, leads a day program that serves recent high school graduates, adults in midlife, and older adults in their 60s and beyond, all in the same building. Her work means adapting the same programming to very different ages, abilities, and needs.

Caroline Turner moderated the conversation, and Zoey Sweeny kept the chat going. Attendees raised their hands throughout to add their own experiences, and many of the best moments came from them.

What we heard

Goals change at each life stage, but belonging matters at every one

We asked each panelist what matters most for the people they support right now, and their answers followed a clear progression.

Ernell described transition age as a time to build independence, confidence, and self-determination, with the goal of integrating into the community. Lisa said midlife is about maintaining what people have learned, with gentle reminders and chances to revisit skills they may not have practiced in years. She also pointed out that people with IDD are living longer, and that midlife used to be close to the end of the lifespan for this population.

Ana said that for older adults the priority is keeping whatever independence a person has while making sure they stay connected. "Getting older does not take away someone's interest, preference, or ability to contribute," she said. Success at her program might mean choosing an activity, making a snack, spending time with friends, or learning something new - and she noted that people can still learn new things at an advanced age.

Major Challenges Across Organizations

When we asked about the biggest challenges, Ernell answered with "Funding, funding, funding," and every other panelist agreed wholeheartedly. Lisa noted that even today, there are families across the country who aren't sure (or haven't been told) what the transition looks like when a person ages out of school in their early 20s. She recently enrolled three new participants in their 30s and early 40s who hadn't known there was anything beyond high school transition, so they had been at home the whole time.

Ana added that when an organization serves several age groups, it has to adapt spaces and services for people who are losing mobility or need more accommodations, often without the funding to match. Several attendees said in the chat that funding requirements don't always line up with what the person wants, and what the family wants doesn't always line up either.

The move from high school to adult services can overwhelm families

One of the providers who joined in on the roundtable said that her first priority during transition is "preventing a full family meltdown." Families go from school supports that were guaranteed to piecing together services on their own. Providers who have worked in this field for years still found the process overwhelming when they went through it with their own family, and they keep that experience in mind with their staff.

One provider also said that many young adults arrive having spent their whole school career on a set schedule, with IEPs focused on what they can't do. When staff ask what the individuals want to do, oftentimes this can be a confusing question. Moving the focus to what the person can do, and how that can lead to meaningful employment and/or community integration, is a big shift for both the person and the family.

Balancing protection and independence

Ernell described how hard it can be to find the right balance between protecting a person and supporting their independence. Families want to keep their loved one safe, and sometimes what the family wants outweighs what the individual wants. An attendee added in the chat that this only works when day programs and families are aligned, because working on something during the day doesn't stick if it isn't carried through at home.

Choice has to be built into the schedule

Every panelist talked about choice, and gave examples of how they promote individual choice at their own programs. Little City takes a poll or tally among its individuals to determine what lessons they'll work on that day. After they started letting participants choose, participation went up and people started communicating more, whether through communication books, devices, speech, or pointing. "That's still their voice," Lisa said.

One attendee reminded the group that individuals change their mind, meaning staff should keep in mind that both consistency and variety play important roles. The same attendee also reminded participants that individuals with limited capacity for speaking also change their mind. So, staff should be especially observant with these individuals. Another attendee shared that her team has participants lead classes in their own talents, like painting, music, sewing, or guitar. One provider said her program brings participants into brainstorming sessions when it faces a problem. If an idea doesn't work, the group comes up with another one together.

Dignity of risk applies at every age

Lastly, we asked the panelists "What do you wish people understood about supporting people in these times of transition? Lisa said “Support does not always mean doing something for the individual. Effective support has to include allowing additional time for the individual to respond, giving them an opportunity to try the task, fail, learn from their mistakes, and helping them work through those mistakes. Also, demonstrating a skill if that’s what they want as they begin to work at independence, and then providing accommodations without taking away their personal choice.” The chat responded with plenty of “thumbs up’s” and an "amen."

Lisa gave the example of a cooking class. Let participants cut the vegetables, spray the pan, and set the timer while staff act as guides who step in only when something is unsafe.

Ana also talked about what the idea looks like as people age. Dignity of risk still matters when someone is in their 60s or 70s, she said. Their days might move more slowly, but they may still want new experiences, responsibilities, and a place in a group.

Asking people what they want and following up

Several providers described how they collect feedback from the people they support. One organization sits down with each person to fill out a survey about their wants, their needs, and how comfortable they feel with things like going online or filling out job applications. Then, the team uses that feedback to plan their services. Ana's program runs annual satisfaction surveys and also follows up on what was said in those surveys to ensure their services are making the best possible impact for their individuals.

Tools that meet people where they are

When we asked which tools or practices had made the biggest difference, Kibu came up without prompting. Ana has watched the same Kibu lesson work at three levels of support in one room: some participants need hands-on help, some need verbal prompts, and some join on their own. Her team connects Kibu lessons to a monthly theme and then practices those skills out in the community.

One organization's team has been following Coach Bri's sign language lessons to build communication with the non-verbal members they support. They mentioned that this has helped staff better understand their individuals and offer them increased quality of support. Lisa said that the individuals she’s supporting have favorite Kibu instructors and will now try exercises they used to refuse because that coach is leading them.

Self-direction has become an important part of how providers bring Kibu into their programming. One provider shared that her team started by piloting Kibu Live in a single room, and participants in other rooms heard what was happening and began asking to join. Because participants were choosing what they wanted to do, and the tool was one her staff could pick up on their own, it spread from there. Even her least tech-friendly staff member signed on, and she ended up being the one who found the custom Jeopardy games.

What this means for providers

A few takeaways came out of this roundtable for anyone running a program:

Families need help understanding what's available after age 22. Many of the adults Lisa described spent years at home because nobody told them about their options. Helping families understand the system early, and being able to make the case for funding.
Choice works when it's part of the routine. Weekly votes, surveys with follow-up, and participant-led classes all make decisions something individuals practice every day.
Staff training should include when to step back. Giving people time, letting them take risks, and waiting until they ask for help are skills staff have to learn, and they matter no matter how old the individuals they serve are.
You're not solving this alone. Providers across the country face the same funding gaps, family dynamics, and staffing questions, and several of the ideas shared here came from people who have already solved problems like yours.

In the meantime:

Join the Kibu Provider Facebook group to keep the conversation going with providers near you
Drop into Caroline's biweekly staff case consult, every other Wednesday at 3:30 CT
Request an in-person visit from the Kibu team by emailing us at hello@kibu.com
Save money on your next invoice and help out another provider. Check out the Kibu Credit Program to learn more at https://kibu.com/referrals

Thank you to Ernell, Lisa, and Ana, and to everyone who raised a hand or added to the chat.