New Youth Advisory Council for Teens and Young Adults With Special Healthcare Needs

March 27th, 2024

A diverse group of four students, including a young woman in a wheelchair, gathered in a college library and enjoying discussion

An opportunity for youth to help improve transition support and make a difference!

Youth with special healthcare needs should have a big role in shaping their future and helping improve support for others.

We want to hear from teens and young adults about what’s important and helpful to them as they plan for the future. Our new Youth Advisory Council is a great opportunity for them to share their input and make a difference.

The Youth Advisory Council (YAC) is a diverse, youth-driven group that aims to develop more youth-focused ways to help individuals and families with transition planning, resources and services.

The YAC’s goal is to support positive outcomes in adulthood for all Illinois youth with special healthcare needs in the areas of:

  • Employment
  • Health care
  • Independence
  • Quality of life

The YAC’s role is to:

  • Bring a different and personal perspective on issues important to youth.
  • Partner with the Division of Specialized Care for Children (DSCC) to help develop more youth-focused methods to enhance care coordination.
  • Develop strategies to improve communication between youth/young adults and older adults.

Members participate in four virtual meetings per year.

Who is Eligible to Join the YAC?

The YAC is open to youth with special healthcare needs who are:

  • Ages 15 to 24
  • Living in Illinois
  • Planning for the transition to adulthood in the areas of education, health care, employment and home and community-based support

Youth do not have to be a DSCC participant to join the council.

How to Join and Learn More

Members must complete an online application to join. (The application is also available in Spanish.)

Visit our Youth Advisory Council page for more information and answers to frequently asked questions.

You can also see the YAC flyer for more details:

If you have questions, please contact Claire Cook, DSCC’s Title V Program Transition Specialist, at clairer3@uic.edu or (800) 322-3722, ext. 1812.

New Law Empowers Adults With Disabilities to Make Their Own Choices

February 18th, 2022

The Supported Decision-Making Act takes effect Feb. 27 and allows individuals with disabilities to make decisions with help from trusted supporters

When making decisions, we all rely on help and advice to choose what’s right for us.

A new Illinois law ensures people with disabilities can get the help they need to make decisions for their own lives.

The Supported Decision-Making Act empowers individuals with disabilities to make their own choices with the right support. It takes effect on Feb. 27.

Research shows that when persons with disabilities have more control over their lives, they experience better health and wellbeing. However, many persons with disabilities have faced unnecessary and restrictive guardianships once they turn 18 simply because of their disability.

Supported decision-making is an alternative to guardianship. It allows individuals with disabilities to identify a supporter. This supporter can help interpret information, weigh options and help communicate the person’s decisions in certain areas as needed.

These areas can include:

  • Where to live
  • Medical care or counseling
  • Money
  • Work
  • School
  • Public benefits and more

An identified supporter is someone the person with disabilities knows and trusts. It can be:

  • A friend
  • A family member
  • A co-worker or colleague
  • A person with professional skills

Under the act, the person with disabilities fills out a Supported Decision-Making Agreement. The agreement identifies the supporter and what areas the person with disabilities needs support with.

This agreement ensures that the person with disabilities makes decisions and not the identified supporter.

This process promotes self-sufficiency and control for individuals with disabilities.

Illinois is among several states that have supported decision-making laws in place.

The Illinois Guardianship and Advocacy Commission has many resources to explain the new Supported Decision-Making Act. These include:

Family Matters Parent Training & Information Center is also hosting an upcoming webinar on the Supported Decision-Making Act.

The presentation will provide an overview of the law. It will also review the contents of a Supported Decision-Making Agreement and share examples of how supported decision-making works.

The “Supported Decision-Making in Illinois: What Is It and How Does It Work?” webinar will take place at 11 a.m. Feb. 22.

Additional resources on supported-decision making are available in the Guardianship and Alternatives section of our Transition Tools.

New Law Extends Illinois Early Intervention Services

October 20th, 2021

close-up of a child's hands stacking large blocks

Starting in January 2022, children with summer birthdays may continue Early Intervention services until the beginning of the next school year.

A new Illinois law will stop a gap in services for children with summer birthdays who receive Early Intervention (EI) services.

Senate Bill 820 (Public Act 102-0209) allows children to continue EI services until the beginning of the next school year if their 3rd birthday is between May 1 and Aug. 31.

The law will take effect on Jan. 1, 2022.

The Illinois State Board of Education’s (ISBE) Early Childhood Department explained that this extension of Part C services to children over the age of 3 applies only if the child:

  1. Reached age 3 on or after May 1 of the current year through Aug. 31
  2. Enrolled in EI and received services before their 3rd birthday
  3. Is eligible for preschool serivces under Section 619 of the Individuals With Disabilities Education Act (IDEA) and
  4. Is found eligible for an Individualized Education Program (IEP) under IDEA and Section 14-8.02 of the School Code

If a child meets all the above criteria, their parents/guardians have the option to remain in EI until the beginning of the next school year or move to early childhood special education services (ECSE) through the school district.

ISBE notes that children enrolled in EI and turning 3 will still need an evaluation, if warranted, and an IEP developed, if qualified, before their 3rd birthday.

If families decide to begin ECSE services, they will not be able to return to EI services once they have ended.

Families can discuss potential eligibility for this extension with their Early Intervention Service Coordinator.

Family Input Guides State Plan for Children With Medical Complexity

August 5th, 2021

Illinois awaits approval to use FMAP funds for improving care for our Home Care Program participants

Illinois has developed a plan to use increased federal funding to improve support and services for children and youth with complex medical needs.

This plan incorporates valuable feedback from our participants, stakeholders and staff members at the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).

The extra funds are part of the American Rescue Plan Act of 2021. The act gives Illinois a temporary 10 percent increase in federal funding for home and community-based services (HCBS). This 10 percent increase is called the Federal Medical Assistance Percentage or FMAP.

Illinois must use the FMAP funds to enhance, expand or strengthen HCBS.

HCBS includes the waiver for children who are medically fragile and technology-dependent (MFTD). Therefore, the FMAP can provide extra funds to help support children and youth in the Home Care Program and their caregivers. FMAP improvements will also affect individuals who receive in-home, shift-based nursing as a non-waiver benefit.

In late May, DSCC asked our participant families, staff and community partners for input on how to use the FMAP funds. We also sought feedback on DSCC’s ideas for improving HCBS for Home Care participants.

We shared the input we received with the Illinois Department of Healthcare and Family Services (HFS). We then worked with HFS to develop Illinois’ proposal for using the FMAP funds.

Ideas included in the proposal are:

  1. Expand consumer direction (the ability for consumers to make choices about the services they receive) to allow unlicensed family caregivers to be paid caregivers. DSCC would then work to develop health and safety monitoring, assist with training and more. This change could provide caregiver relief to a large number of Home Care families.
  2. Develop a nursing portal where open shifts could be posted by nursing agencies and families. This portal would be visible to home nurses and families. The intent is to try to improve nursing coverage for open shifts across the state.
  3. Improve training and access to training to help improve the quality of nursing care in the home. This initiative would include developing training that builds on and complements existing training for caregivers in the home.
  4. Increase the in-home respite nursing rates to match the rates from the 2019 nursing rate increase.
  5. Increase the child-specific training rates to match the rates from the 2019 nursing rate increase.

HFS submitted Illinois’ proposal to the federal Centers for Medicare and Medicaid Services in July. We are now awaiting its approval and planning for the necessary next steps.

It is important to note that though the FMAP funding increase is temporary, we hope to make many of these changes permanent. We are discussing how to handle any relevant long-term costs with HFS.

We are excited about this opportunity to improve care for our Home Care Program participants.

Thank you to everyone who took the time to share their ideas and feedback with us.

We will continue to share updates on the status of Illinois’ proposal as they become available.

DSCC Care Coordinator Raising Funds for Soldier Suicide Prevention

July 27th, 2021

DSCC Care Coordinator Haley Shropshire on her bike participating in the Stop Soldier Suicide Cycling Challenge

Haley Shropshire of the Peoria Regional Office is biking 250 miles as part of nationwide Stop Soldier Suicide Cycling Challenge in July

Four months ago, Haley Shropshire, a Division of Specialized Care for Children (DSCC) Care Coordinator from the Peoria Regional Office, got a new bike.  She hadn’t owned a bike since she was 10. Now, she’s part of the Stop Soldier Suicide Nationwide 250 Mile Cycling Challenge during July.

The challenge is raising awareness and funds to end soldier suicide.

“I’ve grown up surrounded by family members and other individuals who have served in the military. My father served seven years in the Army infantry and although he didn’t die of suicide, it’s important that I show my support and respect for what he did to serve our country,” explained Haley. “I don’t usually do Facebook fundraisers, but I love this cause and just had to go for it!”

According to the Stop Soldier Suicide website, veterans are at a 50 percent higher risk of suicide than their peers who have not served. Stop Soldier Suicide’s mission is to reduce the military suicide rate by 40 percent by 2030.

Funds raised through their Facebook challenges provide direct support to service members and veterans at risk for suicide.

Haley cares deeply about this cause and is hoping others will visit her Facebook page for more information, to check on her progress or make a donation by Aug. 7.

“Riding my bike is just so freeing! I’ve really been encouraged by the great comments and support,” Haley said “I set up my page in June and was surprised when I passed my goal before I started riding. I bumped up my goal and am really hoping I can pass it again. It’s all been so amazing!”

Haley is fast approaching her current fundraising goal of $500 and has logged more than 143 miles.

“I’m riding because I want to help and I want service members who are struggling to know there’s help,” Haley said. “I would be thrilled if my challenge could raise $1,000. That would help so many get the help they need.” 

Haley also encourages any interested DSCC staff members to ride or join her on Facebook.

“I may be riding my bike alone, but I’m not going solo. It’s been incredible,” she said.

If you know a struggling service member, veteran or military family member, Stop Soldier Suicide can help. If you’re a veteran or service member in crisis, please call (844) 317-1136.

Free Summer Meals for Kids

July 6th, 2021

Free Meals for All Kids logo

Summer Food Service Program provides healthy meals and snacks to children 18 and under  

Many Illinois families depend on their children’s schools to provide regular, nutritious meals throughout the school year. The financial strain of the COVID-19 pandemic makes the need for summer nutrition programs even greater.

Kids and teens can eat right this summer with the Summer Food Service Program (SFSP), which provides healthy meals and snacks to:

  • Children and teens age 18 and younger
  • Any person 21 years of age or younger with a mental or physical disability that attends an Illinois State Board of Education (ISBE) certified school program during the school year

ISBE runs the program, which is funded by the U.S. Department of Agriculture (USDA).

There is no application or registration required to receive a meal. You also do not have to show proof of income.

To find a meal site near you:

Please note that students who receive Pandemic Electronic Benefits Transfer (P-EBT) food benefits can also still pick up grab-n-go summer meals.

Star Raft Project Builds Support for Individuals With Disabilities

July 1st, 2020

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.

Sensory-Friendly Santa Stops in Illinois

November 22nd, 2017

Santa Claus

Participating malls across the state invite youth of all ages and abilities to meet Santa.

Autism Speaks is partnering with Cherry Hill Programs this holiday season to provide sensory-friendly Santa Experiences for families across the country.

All families of children with autism and other special needs can enjoy a visit with Santa in a more subdued and calm environment.

Click here for the list of Cherry Hill Programs Santa Photo Experiences in Illinois.

Sensory-friendly Santa events are free and keepsake photo packages will be available for purchase.