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.

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.

Nathan Lichucki is collecting donations for a teen library at Edward Hospital in Naperville for his Eagle Scout Service Project

Nathan Lichucki has spent a lot of time at Edward Hospital in Naperville.

The 14-year-old receives regular infusions there to treat his rare disease.

“Every 21 days, I go for infusions, and I know the hospital very well. The child life specialists there are really good. They give us things when we have hard days, but they don’t usually have stuff for older kids,” Nathan said. “I really like to read, and it is an easy thing to do while you are there. They said they were running out of things for older kids because nothing was being donated during COVID.”

Nathan is also a longtime Scout who is working to achieve the highest rank of Eagle Scout. To earn it, Nathan must complete a service project to show his leadership skills.

Nathan saw a need at Edward Hospital firsthand and decided to create a library for teen patients. The library will include a cart, various books and activities aimed at young adults.

“Many times, kids are in the hospital for several days at a time. There is not good cell service on the PICU (pediatric intensive care unit) side and if you have certain monitors on, a tablet has to be away from your body,” Nathan explained.

“I thought that if kids could have something to occupy them at least for a while, that would be very beneficial.  I have been in the hospital lots of times, more than I can count, and you get super bored, especially when you start feeling better but cannot go home yet.”

Nathan worked with Edward’s Child Life Team to come up with a list of items to collect for the teen library. Nathan is collecting the following:  

• Books for ages 12-17
• Blank journals 
• Colored pencils/markers/adult coloring books
• Puzzle books (crossword, sudoku, etc.) 

All items must be new due to the hospital’s infection control policies.

“The kids get to take the books and games home, so they are useful not just at the hospital but also at home,” Nathan said of the library.

He has sent letters to friends, families and businesses to request donations for the library. He has also set up an Amazon wish list that anyone can access and purchase items to ship to his home.

Local donors can also drop off items at Illinois State Rep. Terra Costa Howard’s Office at 913 S. Main St. in Lombard.

“Everyone thought that my project is a super idea for a project and one that has not been done. The child life specialists were super excited for me to build the library for the patients and they have been very helpful in making sure that I have the right items on the wish list to make sure that they would be used,” Nathan said. “I want to make sure that there are lots of choices for the kids.”

Nina Sittler, a certified Child Life Specialist at Edward Hospital, said she loves that Nathan’s project focuses on an age group that is often overlooked for donations.

“A unique element that Nathan is incorporating is he is asking for book series. We would often get individual books from a series but rarely the entire series. It will be nice to offer the entire series to one patient,” she said.

The deadline to complete Nathan’s Eagle Project is Aug. 2. However, Nathan and his family expect to continue collecting donations on an ongoing basis to help keep the teen library stocked.

Nathan said he’s been happy with the number of donations coming in so far. His health conditions make him highly susceptible to infections, so his troop members have helped pick up items directly from donors when it isn’t safe for Nathan to do so.  

Nathan has a primary immune deficiency and a rare disease called Stiff Person Syndrome (SPS) along with other complicating diagnoses. He is enrolled with the Division of Specialized Care for Children (DSCC) in the Home Care Program.   

“SPS is very hard. It makes my muscles very stiff. I cannot hold parts of my body without them shaking a lot.  It makes it hard to write, speak and walk.  I cannot move my hands a lot and they get locked into place sometimes,” Nathan explained. “ It sometimes pops my joints out of place. I cannot walk very far. I use braces and my wheelchair so that I can get farther.  My face and chest get a lot of muscle spasms, and it makes me forgetful when it attacks my brain.”

Nathan has a beloved service dog named Dakota. Dakota, a 4-year-old Belgian Malinois, monitors his blood sugar and helps him with his balance when he is moving outside of his wheelchair.

As a DSCC participant, Nathan and his family work with their DSCC Care Coordinator to identify goals for the transition to adulthood and self-management. One of Nathan’s goals in this area was to participate in Scouts with minimal medical interruption.

Nathan loves scouting and was inspired by his four uncles, who all earned the rank of Eagle Scout. Nathan’s grandfather was also a scoutmaster for 20 years.

Nathan is currently the librarian for Troop 202.

“My troop does a great job of including me by giving me jobs that don’t have a lot of dexterity and don’t require a ton of small movements.  My friends are in my troop and we liked to hang out before the pandemic, now we just text each other,” Nathan said.

He enjoys all scouting activities, including camping, hiking and looking at wildlife. He has earned 63 merit badges to date — only 21 are required for the rank of Eagle.

“Nathan is a very dedicated scout who holds true to the 12 points of the scout law.  Despite all he has to endure health-wise, he always keeps a positive attitude and does what he can to help others in his troop and community,” Troop 202 Assistant Scoutmaster Dave Andrusyk said. “This past summer, he took advantage of many of the virtual offerings for merit badges and he stayed active in scouting.  The many badges and awards he earned show how dedicated and resourceful he is.”

Nathan appreciates the friendships he’s made through Scouts and encourages other young people to give it a try.

“Helping other people is a huge part of scouting and there are many ways to do scouting.  You can ask people what they need and then provide that as a service,” he said. “You don’t have to stop scouting when you are sick, you can find your own path and do things at your own pace and do a lot of stuff from home and if you pick a good supportive troop, that is very important.”   

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 –

• What Are These Boundaries You Speak Of? An Interview with Diane Becker Part One
• What Are These Boundaries You Speak Of? An Interview with Diane Becker Part Two

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

• Find a Helpline
• National Suicide Prevention Lifeline
• National Domestic Violence Hotline
• The Substance Abuse and Mental Health Services Administration’s (SAMHSA) National Helpline
• Illinois Crisis and Referral Entry Services (CARES) Line
• Illinois Warm Line
• National Runaway Safeline

Connections

• The Trevor Project
• Central Illinois LGBTQ+ Organizations
• Chicago and Illinois Mental Health Agencies and Organizations
• Strong Family Alliance
• PFLAG Parent Support and Resources
• “Expressing, Coping, Reframing: Addressing the Mental Health of ‘Quaranteens’ in the Time of COVID-19”
• It Gets Better Project

Find a Healthcare Provider

• University of Illinois Hospital & Clinics’ Inclusive Healthcare and Policies
• Gender Development Program at Ann & Robert H. Lurie Children’s Hospital of Chicago
• GLMA
• OutCare Provider Directory

Education

• Illinois State Board of Education LGBTQ Student and Family Resources
• Advocating for LGBTQ Students With Disabilities
• Know Your Rights: Students and LGBTQ Rights at School

Information

• Sexuality Resources for Individuals With Disabilities
• Mental Health Resources for LGBTQI Individuals
• Coming Out: Information for Parents of LGBTQ Teens
• RespectAbility’s Resources for LGBTQ+ Individuals With Disabilities

Foundation provided financial gifts to support the needs of eight DSCC participants throughout 2020.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) works with many community organizations and nonprofits to help children with special healthcare needs and their families.

Late in 2019, the Sports for Kids Foundation offered to provide funding to some of our participant families in need.

After working with our Chicago Regional Office staff, Sports for Kids supported the needs of eight DSCC participants and their families during 2020.

“We are extremely grateful that Sports for Kids contacted us and offered their foundation’s support to our participant families,” DSCC Executive Director Thomas Jerkovitz said. “This financial support helped improve the quality of life for each child and family who received it.”

The Sports for Kids Foundation’s financial contributions to DSCC participants included:

• Funds to help a family pay their share of the balance for a new carbon fiber prosthesis for their child. The child’s previous prosthesis was heavy, bulky and not a good fit for the child, causing pain and discomfort. The new prosthesis will help the child take part in sports and other physical activities she enjoys.

• Emergency funds to cover a participant family’s urgent need for over-the-counter medication, clothing, groceries and transportation. The parent was living in temporary housing and unable to work as she cared for her child’s rare progressive genetic disorder.

“During these unprecedented times, we are heartened to know that such caring organizations exist,” Jerkovitz said.

The Sports for Kids Foundation began in 1989 in Omaha, NE, according to Al Vacanti, co-founder and auction coordinator.

Before then Vacanti practiced law in Omaha and was an aspiring sports agent for professional athletes.

“I had modest success at it and in the process, I made some contacts, mostly in the NFL and pro football,” he said.

Those contacts led him to his involvement in a softball tournament that benefited March of Dimes in Omaha. That tournament led to talk about starting a sports memorabilia auction to create a general fund for children with special healthcare needs.

The Sports for Kids Foundation was born and began holding annual auctions of sports memorabilia. Proceeds from the events go to support Sports for Kids’ mission to assist children with special needs and their families.  

Foundation members either hear directly from families in need or seek organizations that serve children with special healthcare needs.

In addition to helping children in Nebraska and the Chicagoland area, Sports for Kids provides financial gifts to children throughout the United States.

The foundation’s funds have helped support a variety of needs for eligible families, including:

• Paying for or supplementing the cost of a piece of equipment, such as an adaptive bicycle

• Covering the costs for a family in a rural community to travel to a city for their child’s treatment

• Paying for a special camp or recreation program

“I would imagine we’ve given close to 1,000 financial gifts over 30 years,” Vacanti said. “There has to be a financial need. And there can be insurance there, but there are many situations where families still have large out-of-pocket expenses (for their child’s needs).”

Sports for Kids was able to hold its 30^th auction shortly before the COVID-19 pandemic shutdown occurred.

Vacanti said the foundation is hoping to hold its next auction sometime later in 2021 and continue its tradition of providing much-needed funds for children with special needs.