disability - UIC Division of Specialized Care for Children

DSCC aims to help families strengthen their support to promote young people’s health, safety and wellbeing.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) wants to help Illinois families strengthen their support for LGBTQ+ youth with special healthcare needs and disabilities.

June is Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) Pride Month. There are approximately 5 million LGBTQ+ individuals with disabilities in the United States, according to the nonprofit RespectAbility.

Our DSCC team can provide resources to help our participant families, healthcare providers and community partners understand and support LGBTQ+ youth and their needs.

Research shows that family involvement in an LGBTQ+ youth’s life, particularly in the first two years of coming out, improves their overall safety, health and long-term well-being.

Teaching children about self-awareness and self-care at a young age can lead to better health and safety as a teenager. Helping a child establish boundaries is also linked to better teen health and safety.

Former DSCC Quality Specialist Diane Becker has studied research in these areas. Diane is a nationally certified juvenile treatment specialist and a licensed clinical social worker. She has worked with families and professionals in the social work and counseling fields for 30-plus years.

Diane appeared on the “Just Breathe: Parenting Your LGBTQ Teen” podcast last year to talk about mental health, boundaries and self-care for both LGBTQ+ young adults and parents.

She shared the latest research and discussed the importance of connectedness, family and health and safety.

You can listen to Diane’s two-part interview at the links below –

We also encourage Illinois families of LGBTQ+ youth with special healthcare needs to contact us with their questions and concerns. You can call us at (800) 322-3722 or email us at dscc@uic.edu to learn more about available resources and support.

You can also visit our online Resource Directory.

Featured resources that can help support LGBTQ+ youth and their family/caregivers include:

National and Statewide Crisis Hotlines

Connections

Find a Healthcare Provider

Education

Information

Mom’s new podcast features Care Coordinator Amanda Kaufman and how she helps children with medical complexity through DSCC

As a Care Coordinator in the Home Care Program, Amanda Kaufman guides parents and caregivers as they learn to care for their medically complex children at home.

One of those parents formerly on her caseload is Erica Stearns. Erica is the mother of two Home Care participants, 5-year-old Margot and 3-year-old Caratacus.

Earlier this year, Erica started a podcast called, “Atypical Truth.” The podcast focuses on issues affecting caregivers, individuals with disabilities and individuals with complex medical conditions.

Erica recently invited Amanda on the podcast to talk about her role at the Division of Specialized Care for Children (DSCC), where she works in our St. Clair Regional Office.

During the conversation, Erica spoke about how Amanda and DSCC have provided invaluable support to her family:

“DSCC was one of the first organizations to step into our lives. They were some of the first social workers who came into our home and really began helping us to navigate our new lives with a medically complex child.
The beginning of this experience was actually very difficult. It occurred during a time when I was still learning how to cope with the acceptance of the unexpected that came with this unknown diagnosis.
DSCC has played a tremendous role in helping our family to thrive, really. Not only have they helped to provide the means for us to care for our children at home rather than in a hospital or an institution, they’ve also supported us emotionally throughout every step of this journey.
They are the people who we can guarantee to check in on us regularly, to tell us about a resource or a charity that might benefit our children, and they even go so far as to send birthday cards to each of the kids, which I just can’t express it enough how touching and heartwarming that singular gesture is.”

Amanda talked about her background as a social worker and her passion for connecting families to the right resources.

“I love finding resources, and I love being successful at finding something that a family needs,” Amanda told Erica.

Amanda also shared how caring for her late mother now helps her relate to her participant families’ challenges and emotions.

You can access the entire podcast episode, titled “Resource Hunter,” on the Atypical Truth website. It is available for listening on all popular podcast streaming services.

A big thank you to Erica for featuring DSCC and highlighting Amanda’s compassion and commitment to our participant families!

printing calculator on a yellow background

Programs provide help for persons with disabilities, limited English-speaking taxpayers, low-income families and individuals over 60

Free tax help is available for Illinois residents in need through several programs across the state.

The Internal Revenue Service (IRS) and AARP Tax-Aide programs are offering free basic income tax return preparation with electronic filing to qualified individuals in select locations statewide.

The availability of services will vary by region.

“Taxes are due on April 15 this year. If a qualified taxpayer needs help filling out their return, free assistance is available,” David Harris, Director of the Illinois Department of Revenue, said in a news release.

“While in-person assistance is more limited due to the COVID pandemic, certified volunteers are still available to help people over the age of 50 years and working-class taxpayers file their state and federal returns accurately and on time while ensuring the health and safety of taxpayers and volunteers.”

*Note the Internal Revenue Service announced it has extended tax deadlines until May 17.

The IRS Volunteer Income Tax Assistance and the Tax Counseling for the Elderly programs offer free tax help for individuals who:

Make $57,000 or less
Have a disability
Speak limited English
Are 60 years of age or older

Taxpayers can search for a free tax assistance provider closest to them by visiting the Illinois Department of Revenue’s website at tax.illinois.gov.

The IRS-sponsored Ladder Up Virtual Tax Assistance Program also provides free basic tax return preparation for low-to-moderate-income and elderly taxpayers.

The AARP Foundation Tax-Aide program provides free tax assistance to taxpayers over the age of 50 or who have low-to-moderate income. Availability is determined at the local or community level by appointment only (walk-in service is unavailable this year).

Decisions on whether a site offers an all-virtual, light contact or in-person approach will be based on safety and health data from Johns Hopkins about COVID-19 levels in a community.

The site locator will be regularly updated, and short-notice changes are possible. AARP membership is not required to receive assistance.

See the state’s Free Tax Preparation news release for more information on all available tax help services.

A diverse group of children forming a circle with their heads in the center

Project to help people with disabilities and their families build a circle of support, connection and safety

The Arc of Illinois and the Illinois Council on Developmental Disabilities have launched a project to help individuals with disabilities and their families/caregivers through the COVID-19 pandemic and beyond.

The Illinois Start Raft Project brings together the tools needed to build a circle of support, connection and increased safety for yourself, a family member or someone for whom you advocate.

The project’s presenter and coach is David Wetherow, founder of the Star Raft Project.

The Star Raft method aims to create lifelong support networks that are person-centered, family-friendly and strengthened by relationships in the larger community.

Wetherow is hosting a six-month set of free weekly Zoom meetings in which participants will find:

Tools, materials and personal coaching for building a circle of companionship, connection and opportunity for yourself, for a family member or for someone you support.
An enjoyable method for sharing the work that will wake up everyone’s contribution.
A ‘navigation chart’ and a set of printable cards that can help you use great strategies and host great meetings.
Free Zoom accounts and coaching so you and your loved ones can stay connected in the time of social isolation and physical distancing.
Six months of personal coaching and support for you and your circle.

The best way to learn about the Star Raft method and take your first steps will be to attend one of the introductory Zoom webinars.

Two introductory webinars will be held every Monday, one at 10 a.m. and one at 7 p.m., through February. The morning and afternoon webinar are identical, so you can choose the one that fits your schedule.

For more information about the project and to register for an introductory webinar, click on the Illinois Star Raft Project newsletter.

The Secret Sleigh Project is now accepting applications for Santa home visits during the 2019 holiday season.

Illinois children with an illness and/or disability that makes traveling difficult could receive a free home visit from Santa this holiday season.

The Secret Sleigh Project is an organization that coordinates volunteers to provide Santa home visits to children who are medically fragile nationwide.

A Colorado mother created the project in 2015 after her own daughter was diagnosed with a respiratory complication.

“It was overwhelming to consider seeing Santa. And then I had a vision of Santa walking into Lily’s room and her lighting up at the sight of him,” Secret Sleigh Project Director Sarah Kordis said.

“I posted the idea on Facebook, and shared how I would like to help other families receive a home visit as well. Within two hours, thanks to a remarkable friend, we had Santa. Two weeks after, Santa visited 16 children all over northern Colorado, including Lily and her brothers.”

That next year, the project enlisted more than five Santas to visit more than 50 children in three different states. Today, the project is able to provide Santa home visits in every state.

“It is not always possible to provide a visit to every child, but we do our absolute best to make it happen,” Kordis said.

To apply for a Santa home visit from the Secret Sleigh Project, interested families must complete the following forms and email them to secretsleigh@gmail.com:

Complete the 2019 Family Application
Complete the 2019 Family Liability Release
Complete the Photo Release Form

Applications are due Dec. 1. After this deadline, the project puts families on a waiting list.

For more information, email secretsleigh@gmail.com or visit the Secret Sleigh Project Facebook page.

Please note, the Secret Sleigh Project is a separate organization that is not affiliated with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC). DSCC is not involved in the organizing or scheduling of these Santa home visits.

Families and professionals from around Illinois attended the annual Stepping Stones of Transition Conference to improve outcomes for transition-age youth with disabilities.

More than 550 families and professionals gathered at the 15th annual Illinois Statewide Transition Conference to gain skills, resources and information to help youth with disabilities prepare for adulthood.

The conference, titled “Stepping Stones of Transition,” took place Oct. 17-18 in Collinsville.

The event targets adolescents, parents, caretakers, vocational professionals, healthcare professionals, educators and others involved with improving outcomes for transition-age youth with special needs. It highlights the opportunities and resources available for youth as they, their families and support teams plan and prepare for the future.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) served on the steering committee to plan this year’s conference.

DSCC also covered the conference-related expenses for 23 participant families across the state. Part of DSCC’s mission is to connect adolescents with special healthcare needs and their families to resources that prepare them for the transition to adulthood and adult services.

Lily Dining is the mother of 14-year-old Paulina, a participant in DSCC’s program. This year’s conference was their first time attending.

“We have learned so much, to the point where I don’t know what I want to do first. It’s been so informative and we are well taken care of,” Lily said of DSCC paying for their conference fees and hotel stay.

Lily appreciated that DSCC made sure Paulina, who uses a wheelchair, had an accessible hotel room.

“Everything was so smooth and well-organized.,” she said. “I was free to just learn and not have to worry about how I was going to pay for it.”

Nineteen-year-old DSCC participant Joy attended the conference with her aunt Cecilia. They found several breakout sessions helpful as Joy begins to plan to enter the workforce. Cecilia said she’s eager to work with Joy to identify her strengths and pinpoint jobs that would be a good match.

Joy and Cecilia also enjoyed attending a special meet-and-greet for DSCC families and staff who were at this year’s conference.

The conference consisted of informative breakout sessions in the areas of:

Independent Living
Education and Training
Employment
Community Integration
Health Care
Self-Advocacy

DSCC participant Collin Monical, 18, attended the conference with his parents. His father, Greg, said each person in their group had different perspectives about transition and found sessions that addressed each of their interests and concerns.

Greg said most of his selected sessions involved help with government programs.

“I was not only impressed with the educational benefits of governmental programs. The human aspects presented through these talks were most enlightening,” he said.

Greg said he was particularly inspired by keynote speaker LeDerick Horne, who discussed his own experiences growing up with a learning disability. LeDerick is now a disability advocate, motivational speaker and spoken-word poet.

“Hearing these positive stories is just incredible… As parents, we tend to see a lot of the negative about disability. Every once in a while, you have to step back to see how far our children really have come,” Greg said.

“We will dwell on the materials presented from the conference for a long while. I believe that we now know more about what is out there and could perhaps ask more pointed questions in the future. Thank you so very much for the assistance provided to make this into a reality.”

More than 20 DSCC staff members also attended the conference to network, learn from others and strengthen their skillsets and the tools they use to serve our families.

DSCC Family Advisory Council member Joyce Clay, who is a professor of nursing at Richland Community College, presented a breakout session on the “The Joys and Challenges of Medical Transition.” Joyce shared her experiences with her own daughter’s complex medical needs and the strategies she has learned to enhance the transition process as her daughter moved from the pediatric to adult setting.

Additionally, DSCC sponsored the conference’s health care 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.

“This year’s conference was a great success helping improve transition outcomes for youth with disabilities/special healthcare needs,” DSCC Statewide Transition Coordinator Darcy Contri said. “I am so happy to have had the opportunity to be involved for the 15 years that DSCC has helped host this conference. It just keeps getting better each year.”

Visit DSCC’s Facebook page to see photos and more information about this year’s conference

Cheryl and Jacob Flynn smiling together in their Quincy University apartment.

Jacob Flynn is fulfilling his college dreams with help from his mother.

Like many young adults his age, 20-year-old Jacob Flynn headed back to school this fall for his sophomore year of college. But there were no sad goodbyes with his mom, Cheryl.

Cheryl not only drove him to Quincy University (QU) but also lives with him full-time during the week in their own apartment on campus.

Jacob has cerebral palsy and is a participant in the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC). He requires round-the-clock assistance because of his mobility issues.

Cheryl decided to become Jacob’s personal aide so he can fulfill his dream of earning a college degree.

The mother-son duo says QU has been the perfect fit for Jacob’s needs. It’s also helped him gain a greater sense of independence.

“I always wanted to go to college like everybody else because I knew that was the only way I could get a job,” Jacob said. “Plus, I had advisors at (high) school that gave me options and opportunities to get here.”

Cheryl said she’s always encouraged her son to aim high.

Jacob Flynn poses on Quincy University's campus

“Just know that it’s possible. Some people will say it’s not, but it is. You have to work hard and try your best and you’ll make it,” Jacob said.

“I’ve always pushed him like a normal child,” she said.

Jacob earned good grades while attending Brown County High School. As he and Cheryl researched college options, they learned that personal aid services would only be available for up to 16 hours.

Cheryl knew that amount isn’t sufficient for Jacob’s needs. She decided to become his personal aide to make sure he received the right accommodations and support.

The next step was finding the right college. Jacob said he was interested in attending a small school so he could easily get around campus. He and Cheryl eventually toured QU, a school of 1,100 students. They immediately felt right at home.

“The people were very nice,” Jacob said.

Cheryl joked that once Jacob saw the pizza oven in the cafeteria, he was sold. Jacob also received an academic scholarship from the college in addition to a scholarship from the Tracy Family Foundation.

The Flynns said QU staff members were extremely helpful in letting them look at available apartments and measuring doorways to ensure Jacob’s wheelchair could fit.

They were able to move into a first-floor, accessible apartment in the center of campus, close to Jacob’s classes and the cafeteria.

While they were moving in, a professor not only helped them unload their van but offered to check if Cheryl could get a discounted meal plan so she could eat with Jacob in the cafeteria. The college’s dining service, Chartwells, offered to let Cheryl eat on campus at no charge. The free meals have been a huge help, she said.

Jacob meanwhile has taken a full load of classes each semester. He initially wanted to major in computer science but changed his mind to focus on history.

Jacob Flynn pets the dog of Quincy University's Director of Safety and Security Sam Lathrop.

Jacob visits with Quincy University Director of Safety and Security Sam Lathrop and his dog.

During class, Cheryl takes notes for Jacob. He also uses a dictation program to type what he says. Jacob also has extended testing times for exams and tells Cheryl what to write.

Cheryl said that though she is on campus with her son, she does her best to “take off her mom hat” and let Jacob do things that a typical college student would like to do, like eat junk food and go to dinner with friends.

Jacob says he enjoys the greater independence.

He’s become well-known on the Quincy University campus and has met people from around the world.

Jacob earned a 3.9 GPA and was also nominated for QU’s Freshman of the Year. He also received a leadership award.

Jacob and Cheryl say it’s important for youth with disabilities to start their college planning early and make time to speak with college staff and other students.

“Talk to people to make sure they’re accommodating,” Cheryl said. “From the cafeteria to the groundskeepers to the housekeepers, everyone here (at QU) has been so helpful.”

The Flynns also use their DSCC Care Coordinator, Kathy, as a resource to help with any of Jacob’s equipment needs, such as a wheelchair lift for their vehicle, and questions about the transition from pediatric to adult services.

Jacob said he wants his peers to see that people with disabilities are no different than they are. He also wants to encourage other youth with disabilities to stay focused on their goals.

“Just know that it’s possible. Some people will say it’s not, but it is. You have to work hard and try your best and you’ll make it,” Jacob said.

Elections worker assists man wearing headphones at voting booth

Learn more about your rights and options with USAGov’s Guide for Voters with a Disability.

Election Day is right around the corner. Do you know if your polling place is accessible? Do you need accommodations?

USAGov has developed a step-by-step guide to help you plan accordingly and know your rights before heading to the polls.

The Guide for Voters with a Disability provides helpful suggestions, including calling your local elections office in advance to find out what accessible accommodations are available at your polling place.

You can also go to Vote.gov to register to vote or check if your registration is up-to-date

“Next Steps to Adulthood: Planning for Transition” includes a free webinar series and in-person workshop.

The University of Illinois at Chicago Institute on Disability and Human Development (IDHD) Developmental Disability Family Clinics present “Next Steps to Adulthood: Planning for Transition,” a free webinar series and workshop. Families and professionals may register for all or select individual webinars to attend.

WEBINAR SERIES:

Healthcare Transition of Young Adults with Autism and other Developmental Disabilities to Adult Systems of Care
Date: Wednesday, Oct. 4, 10 to 11 a.m.
Presenter: Kruti Acharya, MD, UIC Department of Disability and Human Development
Dr. Acharya will review the most recent data about healthcare transition for adolescents and young adults with intellectual or developmental disabilities, describe standard of care for health care transition and highlight strategies to support the transition to adult-centered health care.
Understanding the Components of Transition Planning for Youth with Autism
Date: Wednesday, Oct. 18, 10 to 11 a.m.
Presenter: Meghan Burke, Ph.D., BCBA-D, UIUC Department of Special Education
In this presentation, Dr. Burke will outline the components of transition planning for your child with autism. Specifically, she will discuss transition assessments and goals, student involvement and transition outcomes including post-secondary training and education, independent living and employment.
Employment Policy and Services for Transition-Aged Youth with Disability
Date: Wednesday, Nov. 1, 10 to 11 a.m.
Presenter: Kate Caldwell, PhD, UIC Department of Disability and Human Development
This presentation will give an overview of current policy affecting transition-aged youth with disabilities in the workforce. It will also discuss trends in the field, as well as strategies and best practices in disability employment services and supports. Finally, it will provide resources for those wishing to learn more.
What Happens Next? Exploring the World of Adult Services
Date: Thursday, Nov. 9, 10 to 11 a.m.
Presenter: Kathy Carmody, MSW, Institute on Public Policy for People with Disabilities
This presentation will discuss the community service system for adults with intellectual/developmental disabilities in Illinois, including eligibility requirements, funding options, service models and strategies to promote maximum effectiveness and satisfaction with services. Kathy brings over 30 years of experience in Illinois and an extensive background in helping families understand and navigate the adult I/DD community system.

IN-PERSON WORKSHOP:

Transition Perspectives
Date: Friday, Dec. 8, 10 a.m. to 1 p.m.
Location: First Floor Auditorium, 1640 W. Roosevelt Road, Chicago, IL 60608 (UIC’s Disability, Health and Social Policy Building)
This in-person interactive workshop combines insights from all three webinars to discuss how transition planning impacts daily life, healthcare and employment opportunities. This is your opportunity to learn from three experts on transition best practices. Bring your questions!

REGISTER HERE: https://tinyurl.com/TransitionReg

Questions? Contact Susan Kahan at skahan@uic.edu or (312) 413-2652.

Continuing education credits are available with a $10 fee for professionals in the following disciplines: Advanced Practice Nurses, Registered Nurses, LPNs, Clinical Psychologists, Illinois Teachers Professional Development, LCSW, LSW, LPC, and LCPC, Licensed Dietitian Nutritionists (RD), Nursing Home Administrators, Occupational Therapists, Physical Therapists, Qualified Intellectual Disabilities Professionals and Speech Language Pathologists.

Click here for more information.

Resources for LGBTQ+ Youth With Disabilities and Their Families

Podcast Highlights DSCC “Resource Hunter”

Free Tax Preparation Help for Illinois Families

Star Raft Project Builds Support for Individuals With Disabilities

Project Provides Santa Home Visits to Medically Fragile Children

Transition Conference Helps DSCC Participants Prepare for Adulthood

Mother-Son Partnership Helps DSCC Participant Thrive in College

Options for Voters with Disabilities

Free Webinar Series on Transition