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2022 Transition Conference Prepares Youth With Disabilities for Adulthood

November 28th, 2022

brothers Jaysen, 18, and Justen, 14, McMenamin smile as they sit in their power wheelchairs while attending the 2022 Illinois Statewide Transition Conference

The annual Stepping Stones of Transition Conference gives families and professionals valuable resources and information to support youth on the path to adulthood.

Sixteen-year-old Ayla Etheridge says she’s faced many surgeries and physical limitations throughout her life.

She was born with a spinal lipoma (a mass of fatty tissue) and has experienced nerve damage and scoliosis. At one point, she needed a tracheostomy to breathe.

Ayla now uses a wheelchair and credits her physical challenges with “making my brain better.”

Ayla Etheridge, 16

“I always bounce back and don’t want to just sit around and get depressed,” she said.

Ayla is also a careful planner, extremely tech-savvy and loves gaming, character design and writing.   

As she attended the Illinois Statewide Transition Conference, Ayla thought more about how these interests and skills will shape her future and career goals.

“I’m very independent and would like to do more things myself,” Ayla said. “This conference has kind of helped me visualize and think about my next steps.”

The 17th annual transition conference, titled “Stepping Stones of Transition,” took place in East Peoria on Nov. 3-4. The conference helps both families and professionals learn about the resources, information and opportunities available for youth with disabilities as they prepare for adulthood.

Ayla and her mom, Rachel, were among nearly 450 people who attended in person.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) helps sponsor the conference and serves on its steering committee.

DSCC also covered the related costs for 34 of our participant family members to attend, including the Etheridges and the Barraza family.

“I am so thankful to DSCC for the fact they covered the cost to be here. That made a big difference in us being able to attend,” Anita Barraza said.

“Education empowers me”

Anita’s son, Daniel, 17, is a DSCC participant. His older sister Diana, 22, left DSCC last summer.

All three attended together along with dad, Jose, and Anita’s mother-in-law, who helped care for Daniel and Diana when they needed a break from conference activities.  

“It was great to have my husband be able to be part of the process and that both he and I could listen and take in the information,” Anita said. “(The conference) is also a nice way to spend time together as a family. It’s almost like a mini-vacation for us.”

The Barraza family

Anita is an occupational therapist who works with school children, so she understands both sides of the need for information and resources when supporting young adults with disabilities.

“As a parent, we can feel so overwhelmed. Even if help is right there, that reach can be hard to do,” Anita said.

That’s why opportunities to learn about a variety of resources and network with other families and professionals are so important.

“These types of resources educate me on how to best provide for my children’s needs and for their future,” Anita said

Both Daniel and Diana have significant medical needs and are unable to safely live on their own.

Diana says it’s hard to think about, but she realizes must start planning for who can care for Daniel and Diana when she and her husband can no longer do it. Residential placement may be necessary in the future.

The Barrazas also want to learn about possible day programs that can offer one-on-one support to Diana and possible employment options that would work well with her needs.

“Education empowers me to be better prepared to help (Diana and Daniel) have a good quality of life,” Anita said.

“One step ahead”

Anita had told two other DSCC moms about the conference and encouraged them to attend. One of those moms is her friend Yessy Castillo.

Jacob Ortiz and his parents

Though Yessy’s son, Jacob Ortiz, is only 4 years old, she knew it was important to go. 

“I want to be aware of what services are available for Jacob,” Yessy said. “Most importantly, I want to be one step ahead. This conference allows me to get the information on what can benefit Jacob.”

Jacob was born with a cleft palate, an underdeveloped jaw and his tongue pushed back toward his throat. He also had malformations in his hands and feet, and his intestines did not rotate appropriately.

Jacob now has a tracheostomy and depends on a ventilator 24-7 to breathe.

“I appreciate getting the opportunity to meet people and attorneys for advice and support and more legal information on Jacob’s rights,” she said. “If I was not exposed to these events, I wouldn’t know what is available.”

While Yessy speaks limited English, she said the presentations all gave information in a way she could understand.

Melania Tinoco, who also speaks Spanish and learned about the conference from Anita, said connecting with other families at the conference helps her feel more confident.

“It helps seeing we’re all in the same boat and finding out we aren’t alone,” Melania said.

Jeny and Melania Tinoco

Her daughter Jeny is 14 and has been a DSCC participant since birth. Jeny has Pitt-Hopkins Syndrome, a rare genetic and neurological condition that causes developmental delays.

Melania said the conference has helped her plan for what happens to Jeny if she gets sick and/or can’t take care of her daughter. She also appreciated the breakout sessions on helping youth with disabilities respect their body and feel empowered to say “no.”

“The information has been helpful and inspirational,” Melania said.

Putting information into action

The conference consisted of informative breakout sessions in the areas of employment, education, health care and more.

DSCC participant Vera Lynn Lindquist, 17, and her grandmother, Cheryl Lindquist Calcese, said they enjoyed the “Awareness and Transition Services for Students with Disabilities” session. It gave them helpful information on sex education and tips for building good money management skills.

Vera Lindquist and her grandmother, Cheryl Lindquist Calcese

Cheryl is Vera’s legal guardian. She and Vera planned to start a new budget at home after the conference. Vera will get paid for doing chores, such as cleaning her room, helping with the laundry and feeding her two dogs and cat. She will also get a debit card so she can buy things and track her spending.

Vera has autism, attention-deficit hyperactivity disorder, anxiety disorder from childhood, tinnitus and hearing loss, and seizures.

She enjoys being an advocate, helping others and encouraging everyone to be kind.

During the breakout session, “Your Story Has Power: Great Expectations and Pieces of the Self-Advocacy Puzzle,” Vera stood up and actively participated during the presentation.

Vera and Cheryl hope to attend the transition conference again next year.

DSCC participant Sabrina Doueihi, 20, was among several self-advocates who shared their perspectives during the “Transition Success Stories” breakout session. She is currently a junior at Bradley College, where she is studying criminology. She hopes to go to law school and become a prosecutor.

Sabrina spoke about the importance of staying true to yourself and what you want to do. She also recommended that youth with disabilities focus on what they can do and who can help them achieve their goals.

“Trade stories and network”

For brothers Jaysen and Justen McMenamin and their parents, the transition conference was a good opportunity to plan for life after high school.

Jaysen McMenamin, 18, is a senior at Woodland High School near Streator, where he is an honor roll student and honorary captain of the school’s football team.

He says he’s interested in digital media and related job opportunities. But, he’s still deciding on the path that’s right for him after graduation.

Brothers Jaysen and Justen McMenamin

Justen, 14, is a freshman at Woodland High and interested in coding. Both brothers have Duchenne Muscular Dystrophy and are enrolled with DSCC.

Their stepfather, Charles Cusick, said the family wanted to learn more about jobs and career fields that are accessible for the boys and provide more opportunities than what’s available in their small community.

They were also seeking information about camps and other recreation programs for Jaysen now that he has aged out of other programs.

The brothers enjoyed talking with some of the vendors about college resources, job coaching and training programs, and future housing opportunities.

Jaysen would like to live on his own but needs to make sure he has the right supports in place.

The brothers’ mom, Deanna Cox, said she appreciated the breakout session on Supplemental Security Income (SSI) benefits. Jaysen and Justen’s dad passed away in June, and the session helped her better understand how to help her boys keep the benefits they’re entitled to. 

The family met up with their DSCC Care Coordinator Kristin Lenover during the conference.

“If families can get away from work, there’s so much they will get out of being at the transition conference,” Kristin said. “Attending in person gives you so much access to all kinds of information. There are also opportunities to meet other families, trade stories and network.”

Thirty DSCC team members attended the conference to network, learn from others and strengthen their skillsets and tools to serve participant families.

DSCC also sponsored the conference’s healthcare track for providers who play a role in the transition from the pediatric to adult healthcare system and those who build youth’s capacity and healthcare skills to prepare for adulthood.

DSCC Transition Specialist Darcy Contri has helped plan the conference since it began 17 years ago. This year’s event was her last before she retires.

“I’m so grateful for and have loved being part of this great work,” Darcy said. “Partnering with talented people from organizations across the state to help others has made a positive difference in so many lives. It is my hope the annual conference will continue to make an impact on improving adult outcomes for youth with disabilities for many more years.”

Visit our Facebook page to see more photos from this year’s conference.