By Charlene N. Rivera-Bonet | Waisman Science Writer
Luis “Lui” Montoto’s dream is to open up a food truck where fast food doesn’t sacrifice being healthy, filling, and delicious. He loves being in the kitchen and cooking for his family. He is attempting to get his degree in culinary arts at Madison Area Technical College to become a sous-chef, but has run into a few major roadblocks: not being able to pass a requisite class and a cancer diagnosis. Some aspects of Lui’s transition into adulthood as a man with autism have been bumpy, unusual, and uphill to say the least. And yet, he has pushed forth with the help of one thing that keeps him steady: his family.
The road to adulthood can be rough terrain. It consists of uncharted territory and many changes. This can be even more challenging for individuals with intellectual and developmental disabilities (IDD), who may often rely heavily on resources, supports, and routines that can change or end once high school is over or once they are 18.
“There are a number of barriers and challenges that youth with disabilities may have as they look at transition [into adulthood],” says Tim Markle, MA, MA/CS, director of the Wisconsin Youth Health Transitions Initiative (YHTI) at the Waisman Center.
Understanding the multi-faceted and complex process of transition, YHTI, along with other programs at the Waisman Center, work to help make this trek smoother by providing resources, support, and guidance for individuals with IDD and their families, and training service providers to support transition in a holistic way.
LIFE AFTER HIGH SCHOOL
For adolescents with IDD, the transition out of high school comes with many challenges, from changes in routine, to entering new systems in which supports are not as involved. “Where I had trouble most was in the beginning parts of college,” Lui recalls.
For Lui, the transition into college was a big challenge because he no longer had his usual systems of support in place like his paraprofessionals in high school. “I had a bit of a learning curve in order to adjust from going from an easier setting to a more harder, higher-paced and stricter system when it came to my grade scale,” Lui says. “Especially for college, because I wasn’t actually brought up on that specific system for a while, so it made it a bit difficult, and plus, with my social skills, it makes it pretty hard for me to make connections with people as well.” He ran into the situation of not being able to pass a requisite class to get into the culinary program. Which delayed him for more than two years.
Even though the school does make accommodations for him, and tutoring is available, there isn’t anyone helping him make sure those accommodations are met and working, and sometimes it can be a challenge for him to know how and who to ask for help.
FINDING THE RIGHT MIX OF NEW ROUTINES
For Blake Edison, an easygoing, energetic 31-year-old artist with autism, the biggest challenge in the transition to adulthood was the change in the routine he had found great comfort in. When he was done with high school his parents Sheri and Glenn were faced with the question of what was next for Blake.
“When the schedule of school has pretty much filled your young person’s day from 7:30 a.m. to oftentimes 3:30 or 4:00 p.m. each day, then you have to stand back and say, ‘How do I recreate a life for my loved one, whether it’s academic, vocational, social, or all of the above?’,” Sheri says. When Blake was in 10th grade they started thinking about how to help him create a life that a typically-developing young person would create on their own.
For his parents, the biggest challenge was refusing to be limited by what people said was available for Blake. “We actually took a much broader approach and said, ‘What kind of life would give Blake a quality of life given who he is as a person, what he enjoys, what his talents are, and so forth’,” Sheri says. That meant that they weren’t always looking at programs designed for people with disabilities. “We feel like we have discovered a bit of the secret sauce of what makes a quality life [for him],” Sheri says. Blake works part time five days a week, goes to the ArtWorking studio twice a week, and works out with a personal trainer a few times a week.
HEALTHCARE AND GUARDIANSHIP
Before Lui graduated high school, Lupita and Luis Montoto, Lui’s parents, filled out paperwork to keep guardianship of Lui even after he became an adult, allowing them to make important legal decisions on his behalf. This isn’t always needed for individuals with IDD. Only when they are not able to make legal decisions by themselves. This was a huge help when Lui received his cancer diagnosis of T-cell lymphoblastic lymphoma/ leukemia in 2021. “I don’t think I have had any issues trying to access treatments or anything for Lui, because thank God, I got the guardianship,” Lupita says. Even during the COVID-19 pandemic Lupita was able to attend every appointment and treatment session with her son. “I was always with him every single time,” she adds.
Despite their ability to make decisions on his behalf, Lupita and Luis have always consulted Lui on all decisions regarding his healthcare. At times, Lui decided he was done with a specific treatment, and preferred a different course of action, and they respected those decisions. “Because at the end of the day, he can decide and has the last say,” Lupita says.
“Healthcare is a huge area of transition that usually is not thought about,” Tim says. When children with IDD become adults, their whole healthcare system changes, on top of now having to do it by themselves – in the cases where guardianship is not needed or obtained. Because of this, he emphasizes the need to teach adolescents in transition how to utilize healthcare, when to call a doctor, when to use the emergency room, how to pick up prescriptions, and more.
At the Waisman Center University Center for Excellence in Developmental Disabilities (UCEDD), YHTI helps make healthcare transition easier for youth with special healthcare needs in Wisconsin by developing and sharing transition resources with families healthcare providers. This transition from pediatric to adult healthcare, which happens between the ages of 12 and 26, can require extra planning if the child has an IDD or special healthcare need, so YHTI offers tools, resources, and training to help guide the transition.
FACILITATING ACCESS TO RESOURCES
The most helpful tool for Blake’s family during this period of transition was networking, Sheri says. “Probably the best tool in the world is getting out there, meeting other people who are similarly situated, talking to them about what they’re doing, being vulnerable and open with what your fears and your anxieties are, and giving people a chance to help you,” she says. ArtWorking was one of the nonprofit agencies that she discovered through networking. She knew that Blake had a love for art and an artistic talent, so “we knocked on their door to find out whether Blake could participate.”
Sheri came across the Waisman Center website while looking for resources for Blake. She called to learn more about the research being done at the center. “As a parent, you want to be close to the Waisman Center,” Sheri says.
The Edison’s and Montoto’s experience with transition into adulthood was unique to them, but reflects the difficulties of many families of individuals with IDD to find the right mix of resources and supports. Recognizing the needs of families like the Edisons and the Montotos, the Waisman Center has been focusing efforts on expanding resources, services and trainings to help families navigate the transition to adulthood, making it less siloed, and more cohesive.
“You raise kids to become adults. And we want those adults to live a self-determined life.” Tim says. “We want them to be able to advocate and stand up for themselves.”
The WI Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Training Program, with support from the Edison family and the Health Resources and Services Administration (HRSA) grant, has created a program, Transition Counseling Services, through which a group of LEND trainees – in social work, occupational therapy, nursing, and other areas – meet with families to understand their goals, needs, and questions around transition, and find key, curated transition information for them. “It could be things like, ‘I’d like to learn more about what kind of independent living opportunities exist in the community for my child or I want to fully prepare for what to expect financially from adult service systems’,” says Kate Szidon, who oversees the program.
The program started around healthcare transition, but has now expanded to include multiple areas. “What we learned is families were interested in learning more about healthcare transition, but they also really wanted to learn about a whole other host of things that were related to adult transition,” Kate says.
Healthcare, education or workforce, social circles and independent living are some of the biggest items on the list of systems or areas of change for individuals with IDD as they become adults. Although these areas can relate to each other, the systems can be quite siloed, and require specific work for each one. In the UCEDD, the Wisconsin Integrated Transition Planning (WITPP) brings together self-advocates, family members, and people who work in education, employment, and healthcare to improve and simplify the transition planning process by promoting integrated transition planning. This refers to thoughtfully mapping out and preparing for the youth’s life as an adult by integrating planning for the youth’s education, work, and healthcare to achieve their goals as an adult.
TRANSITIONING AS A FAMILY
For Lui, it was family support that got him through his battle with cancer. “[Family support] literally helped me out through literally one of my lowest moments of all time. And even when they were down, I felt like I had to get back by just keeping up a positive attitude about the situation as well. So yeah, family support was a very major contributing factor,” Lui says.
For the Edisons, family members, such as cousins, have been key to developing social relationships for Blake, and they hope to rely on them when figuring out independent living situations for Blake. “He’s got six cousins and their spouses who we are bringing into the mix to ensure family support as things move forward. Right now, he lives with us. And we hope that that situation will change in the near future,” Sheri says.
Lui’s hope is to also be able to live independently in the future. “He has ambitions, like any other kid does. He wants his own money. He wants a car,” his dad, Luis, says. “I’ve expressed to him the need for independence,” he adds. He recognizes that as parents, they are not going to be able to be with Lui forever. “I would like for him to be more independent, on his job, his day to day activities, and not depend much on us as parents. Not because it’s cumbersome or it’s bothersome, but because that’s what I guess we as parents always want for our kids, to be independent and to thrive and to be successful.”
“Every year Blake does things that surprise us that you would never think that he would have been able to do just a year ago or two years ago. So, we continue to keep an open mind and look at Blake just like we look at any person that’s continuing to grow and evolve and learn,” Sheri says. There is a lot of intentional work behind preparing adolescents with IDD for adulthood, in a way that will not just get them through the transition, but provide a sustainable basis for their entire adult life. Although there are many resources to help, they need to be tailored to each person, because there is so much heterogeneity in disabilities, and in life. So, families keep working until they find, as Sheri says, the secret sauce that works for their loved one. ◼
| Your support makes a difference. Donate now to advance knowledge about human development, developmental disabilities, and neurodegenerative diseases through research, services, training, and community outreach. | DONATE NOW |