Children with special healthcare needs will move into Medicaid’s managed care program on Feb. 1.

HealthChoice Illinois is the new Medicaid managed care program that is now required statewide.

The Illinois Department of Healthcare and Family Services (HFS) will move children with special healthcare needs into a HealthChoice Illinois health plan on Feb. 1, 2020.

Enrollment in a HealthChoice Illinois plan is mandatory for most DSCC families who both:

• Receive Medicaid and
• Do not have private health insurance

Note that if your child is a Home Care Program participant, your child will not transition to a HealthChoice Illinois plan. This transition only affects DSCC’s Core Program participants who meet the criteria above.

HFS is sending enrollment packets to affected families this month. These families must choose a HealthChoice Illinois health plan and primary care provider (PCP) by mid-January.

There are at least four HealthChoice Illinois health plans to choose from.

We developed a list of questions to help our participant families select the best plan for their family’s needs. The “MCO Selection Tip Sheet for Families” is available at https://dscc.uic.edu/browse-resources/available-brochures-pamphlets/.

More information about Illinois’ managed care program is available at https://enrollhfs.illinois.gov/choose/compare-plans.

DSCC staff is working with HFS and its partners to continue our care coordination services for families beyond the Feb.1 transition. We will share more details about this process once they become available.

We remain committed to supporting our families and making this transition to a new health plan as seamless as possible.

Families may contact their local DSCC regional office with questions. Families may also reach us at (800) 322-3722 or dscc@uic.edu.

The story of 3-year-old Nash Stineman’s huge birthday parade goes viral as his family seeks treatment for his rare, terminal disease.

Nash Stineman has a rare condition called Spinal Muscular Atrophy with Respiratory Distress or SMARD.

It is so rare, Nash is the only person in Illinois ever diagnosed with this disease, his family says. There are only 60 children living with this disease worldwide.

SMARD causes progressive muscle weakness and respiratory failure, often leading to death before age 2. There is no known treatment or cure.

When his mom Brittany heard her baby boy’s diagnosis, she sprung into fight mode.

“I’m not going to accept that my child is going to die without doing everything in my power. I just can’t accept that,” she recalled.

Brittany created a non-profit called Smash SMARD to raise awareness and funds for research. She’s tracked down researchers and raised over $2 million to develop gene therapy for SMARD patients.

So when Nash’s third birthday approached, the family was ready to celebrate.

“It’s been a really rough road, but we have had so much community support. Since Nash is immunocompromised, he hasn’t been able to meet most of the people who have relentlessly supported him,” Brittany said. “One of my best friends said, ‘Nash turning 3 is such a big deal, and you have been working so hard. Let’s do something for Nash and bring the party to him.’ So that is what we did, and we were able to thank so many of the people that have continued to support our family this whole way through.”

Brittany initially thought a group of a dozen or so friends could drive by their house in a small parade so Nash could watch and wave. Her friends reached out on social media to see if anyone had a truck or special vehicle that could participate.

The response was overwhelming.

On Sunday, Nov. 17, the day before Nash’s actual birthday, more than 100 vehicles, including village fire engines, school buses, police vehicles, Jeeps and specialty trucks, paraded in front of the Stinemans’ home.

Nash’s 5-year-old brother, Blake, even served as the grand marshal leading the pack.

The procession took more than an hour as Nash watched with a huge smile on his face.

“It was the most special thing that ever happened to us, even more special than our wedding day,” Brittany said. “For the first few days, we couldn’t even form a sentence about how special it was.”

The heartwarming story was covered by CBS Chicago. It quickly went viral with other media outlets picking up the story, including CBS News and CNN. Brittany also appeared on Anderson Cooper’s daily live news show, Full Circle.

“It was unbelievable,” Brittany said. “We have an amazing community. I knew people would want to take part, but I did not realize just how big it would be.”

Videographers and photographers even donated their services to capture the special celebration.

“Now, we want to capitalize on the attention for our fundraising,” Brittany said.

The Stineman family hopes those who see Nash’s story will consider donating $5 to their non-profit, Smash SMARD, at www.smashsmard.org. Smash SMARD is currently working to fund gene therapy research and a clinical trial for six to 12 patients in the year 2020.

“Without this treatment, Nash will not live,” Brittany said. “This is what we’re asking for. If everyone donates $5, we are hopeful that for Nash’s 4th birthday, we will be celebrating with gene therapy.”

Nash is currently enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children. He requires in-home nursing and is a participant in the Home Care Program.

“(DSCC) has and continues to make being at home so much more manageable and has fought with us and for us. We really genuinely appreciate it,” Brittany said.

At birth, Nash appeared to be a typically developing baby. However, within the first few months of his life, he stopped growing and was considered “failure to thrive.” He soon was hospitalized, going into cardiac arrest and a coma, spending seven months in the hospital.

While his diagnosis at 11 months of age was difficult, Brittany said it at least provided answers. She has since devoted her life to help find an effective treatment for Nash and other children like him.

She describes Nash’s third birthday as an emotional and bittersweet milestone.

“It recently hit me that my child is not going to have the same opportunities as others and that has been pretty challenging and overwhelming. But at the same time, I wouldn’t choose this for my family but now I would never change it. I don’t want to think about my life with him not in it,” she said.

“For how much Nash has been through, he truly is beyond inspirational. He lives his life every day with a huge smile on his face, and I am so hopeful for what the next year has in store.”

For more news coverage on Nash’s birthday celebration and his condition, visit:

• www.cbsnews.com/news/boy-with-rare-disease-gets-parade-for-3rd-birthday/
• www.cnn.com/2019/11/18/us/birthday-parade-smard-trnd/index.html
• https://chicago.cbslocal.com/2019/11/22/nashs-story-to-smash-smard/

For more information about SMARD and the Stineman family’s fundraising efforts, visit www.smashsmard.org.

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

Chicago Home Care Regional Office’s Yesenia Bustamante honored for outstanding service to children with special healthcare needs.

Yesenia Bustamante is the 2019 recipient of the Award of Merit from the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC). The award recognizes exceptional employees for outstanding dedication and service to children with special healthcare needs.

Bustamante is an Enrollment Assistant with DSCC’s Home Care Enrollment Team. This statewide team serves as a family’s first introduction to the Home Care Program. The program supports families who care for children and young adults who are medically fragile and require skilled in-home shift nursing.

Yesenia works at the Chicago Home Care Regional Office. Her colleagues say she is an indispensable team member who is dependable, motivational and passionate about serving DSCC’s participants and families. Yesenia often goes on home visits to provide Spanish interpretation services and frequently rearranges her schedule to be available to meet with families.

“Yesenia is highly organized and keeps her colleagues on task while ensuring our participants’ needs are at the center of what we do,” DSCC Executive Director Thomas Jerkovitz said. “She leads by example and shows the utmost empathy and care for each Home Care participant and family’s situation.”

After 15 years at DSCC, Yesenia says she loves the feeling of helping a family in need.

“Throughout the course of my tenure at DSCC, it has been a privilege and an honor to work on behalf of our families and participants to ensure that they have access to much-needed resources to assist them with maintaining daily life within their respective communities,” Yesenia said. “It is amazing and inspiring to see so many caring individuals come together as one to carry out DSCC’s mission to partner, help and connect families to services and resources.”

DSCC staff nominated a total of thirteen of our colleagues for this year’s Award of Merit. As the winner, Yesenia receives an Award of Merit memento, a $2,000 award and recognition from the Executive Director.

The other 2019 nominees are:

• Stephanie Alumbaugh, Champaign Regional Office
• Amy Cunningham, Rockford Regional Office
• Kim Firkins, Lombard Regional Office
• Jane Gowans, Mokena Regional Office
• Andrea Hoskinson, Central Administrative Office in Springfield
• Tiffany Kalka, Central Administrative Office in Springfield
• Roxane Lowry, Champaign Regional Office
• Charmaine McGovern, Lombard Regional Office
• Amy Nixon, Central Administrative Office in Springfield
• Brittani Provost, Champaign Regional Office
• Brenda Solomon, Central Administrative Office in Springfield
• Violet Wiker, Central Administrative Office in Springfield

Congratulations, Yesenia! And a big thank you to all of the nominees for their excellence on behalf of our participants and families!

“Let’s include the kids who often feel as if they are forgotten.”

Andrea Stambaugh’s son, Axel, is 3 years old. He loves to keep up with other kids his age, and trick-or-treating on Halloween is no exception.

This fun tradition, however, leads to disappointment for the young participant in the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) program.

Axel is unable to eat candy and other food items typically passed out at Halloween due to his medical needs. The lack of safe treats for Axel and children with food allergies or special needs is what makes the Teal Pumpkin Project so important, Andrea said.

The Teal Pumpkin Project aims to make Halloween safer and more inclusive for all youth by promoting non-food alternatives to the traditional Halloween candy. It encourages households to put a teal pumpkin on their doorstep to show that non-food treats are available, such as small toys or glow sticks.

Over the weekend, Andrea wrote a moving post on Axel’s Facebook page, “Axel’s Journey with CMV”, to explain what the Teal Pumpkin Project means to children like Axel.

We wanted to share her words to highlight the project’s impact on families in our program:

“Why is the #TealPumpkinProject so important?

Let me explain with the one photo below (shown above).

Every year our hometown has a day dedicated to trick or treating around the businesses.

We trick-or-treated today for four hours.

As Halloween tradition goes; once it was over, all the kids go home and beg their parents to sort through their candy bags so they can trade with their friends and eat candy until their stomach hurts.

Well, I shouldn’t say all kids, I should say that’s what MOST kids do.

In some houses when the child gets home from a fun day trick or treating, all they ended up with was a basket full of treats they can’t enjoy and disappointment.

This picture was taken when we got home today. As you can see, the majority of Axel’s teal bucket was full of candy he can not eat and only a few trinkets that he can enjoy.

The owners of the two businesses who participated in the Teal Pumpkin Project this year actually are followers of our blog.

For kids with allergies or g-tubes (gastrostomy tubes) or medical conditions that limit the things they can or cannot eat, this is what a typical Halloween night looks like.

My son so desperately wants to do the things the other kids are doing. So we take him trick-or-treating. As a parent, it breaks my heart knowing that at the end of the night there is nothing in his bucket really for him.

If you don’t know Axel, he can eat nothing by mouth and is completely dependent on his g-tube for nutrition.

Today, as people would place their Halloween bucket in front of him he would look down to see the candy and a disappointed look would come over him. In the beginning, he would pick a piece to satisfy the person with the dish, but toward the end it wasn’t even worth it. He knew none of the candy going into his bucket were really for hIm.

When I picked through his bucket and gave him the seven things he could enjoy, he was happy with that. He is easy to please. But, I just wish I had a whole bucket of things to give him.

I’m not writing this for sympathy.

I’m writing this as a mom. A mom whose only goal in life is to make sure her son is always included.

I’m writing as a plea to those who are reading.

I’m begging you to participate in the Teal Pumpkin Project this year and offer non-food items to those who need them.

Let’s include the kids who often feel as if they are forgotten.

If you need to know what the Teal Pumpkin Project is or would like to register your house on the map of those participating, you can find additional information here ——> https://www.foodallergy.org/education-awareness/teal-pumpkin-project.”

NOTE: The timeline for the Medicaid managed care transition has been extended. Read more at https://dscc.uic.edu/move-to-managed-care-extended/.

The Illinois Department of Healthcare and Family Services (HFS) has expanded its Medicaid managed care program.

Managed care is a type of health insurance program. When you enroll in managed care, you become a member of a health plan. HealthChoice Illinois is the new managed care program that is now required statewide.

This change will affect some participants’ enrollment status with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

Enrollment in a HealthChoice Illinois plan is mandatory for most DSCC families who both:

1. Receive Medicaid and
2. Do not have private health insurance

Note that if your child is a Home Care Program participant, your family will not transition to a HealthChoice Illinois Plan. This transition only affects DSCC’s Core Program participants who meet the criteria above.

There are at least four HeatlhChoice Illinois health plans for families to select.

Affected families must choose a HealthChoice Illinois health plan and primary care provider (PCP) by Oct. 15. If a family does not choose a plan before Oct. 15, HFS will assign one.

“Our staff will support our families to make this transition to a new health plan as seamless as possible” DSCC Executive Director Thomas Jerkovitz said.

We developed a list of questions to help our participant families select the best plan for their family’s needs. The “MCO Selection Tip Sheet for Families” is available at https://dscc.uic.edu/browse-resources/available-brochures-pamphlets/.

We urge affected DSCC families to please watch their mail for an enrollment packet from Illinois Client Enrollment Services.

More information about Illinois’ managed care program is available at https://enrollhfs.illinois.gov/choose/plans-by-county/cook. Illinois Client Enrollment Services plans to mail packets the week of Sept. 16.

DSCC staff is currently working with HFS and its partners to continue our care coordination services for families affected by this transition. DSCC’s financial assistance should also be available to affected families. We will share more details about this process once they become available.

DSCC Care Coordinators will reach out to affected families to collect updated information about their child. Care Coordinators will also continue to work with participants to develop their plan of care.

Again, this transition only affects DSCC’s Core Program participants who receive Medicaid and do not have private health insurance.

“Through these changes, DSCC will remain a resource for affected families. We value their partnership and will continue to help connect their children to the proper services and support,” Jerkovitz said.

Families may contact their local DSCC regional office with questions. Families may also reach us at (800) 322-3722 or dscc@uic.edu.

Makenzie Hardesty continues to thrive while living with a rare terminal disease.

Like many mothers on graduation day, Andrea Lancaster cried tears of joy as she watched her daughter Makenzie Hardesty receive her high school diploma.

It’s a milestone that once seemed out of reach.

The 18-year-old Normal Community West High School student has mucopolysaccharidosis (MPS) type VI. It’s a rare terminal illness that affects many organs and body functions. Her younger sister Isabella has the same disease.

“Quite honestly, I didn’t expect them to live this long. At first I was told age 5, and then it was 13 and then it was, ‘We don’t know,’” Andrea said of her daughters’ prognosis. “We’ve been doing a lot to make sure they can stay here as long as possible.”

For Makenzie, these efforts meant numerous childhood surgeries and 12-plus years of lengthy enzyme replacement therapy treatments each week.

Through it all, she continued to work hard and balance school work with her medical demands.

She graduated May 25. Two local television stations covered her story.

“Do the best you can”

Makenzie said her mantra has been, “do your work and do the best you can, always.”

It’s a simple work ethic that can provide hope to many living with rare and terminal diseases.

“Something I want more people to see is that Makenzie and Bella are still living and striving with MPS, even later on in life than what was expected,” Andrea said.

MPS Type VI is a lysosomal storage disorder. Makenzie and Isabella lack an enzyme needed to break down a certain form of sugar, so it builds up in the body. For the Hardesty sisters, it affects their airways, eyes, hearing and joints. It also causes small stature.

Makenzie has had a tracheostomy tube since she was 6 years old and needed in-home shift nursing for most of her life. She’s been enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) for 13 years.

Both she and Isabella undergo enzyme replacement therapy treatment at Children’s Hospital of Illinois once a week for about six hours to help combat the effects of their illness. The lengthy treatments meant she missed one day of school each week.

Makenzie says she would get her homework assignments the day before her therapy treatments. While receiving her therapy, she’d work on schoolwork with a teacher from the hospital’s pediatric school.

“I’m very proud of her,” Andrea told WICS ABC Newschannel 20. “No matter what surgery she’s had, no matter what she’s been through, she did it with A’s and B’s and no missed assignments.”

“You can make it”

As tough as living with MPS Type VI can be, Makenzie said her condition could be much worse, so she tries to focus on what she can do.

“I don’t let that affect me because I do stuff that I like to do, and I don’t let my disorder get to me,” she told WEEK 25 News.

During high school, Makenzie discovered a love of photography. She’s now looking into photography courses through the New York Institute of Photography.

Makenzie’s current doctors say she still needs 24/7 care from a shift nurse and/or family member due to her tracheostomy tube. However, Andrea said her daughter has become much more stable and less dependent on her trach.

The family is working with their DSCC Care Coordinator to transition to an adult pulmonologist who could help Makenzie reach her goal of becoming more independent in her care.

“I want to give her space to be an adult,” Andrea said.

She and Makenzie are also working with DSCC and the Department of Human Services to find out what adult services are available as she navigates life post-high school.

Makenzie encourages other DSCC participants who are starting high school to not be shy and use their voice to speak up or ask a question.

She also stresses the importance of hard work and perseverance.

“I didn’t think I was going to get through it but I’m like, ‘Hey, I’m done. I passed a milestone.’ So if you’re fighting through something, you can make it,” Makenzie told WEEK 25 News.

The Seizure Smart School Act requires seizure action plans for students and training for school staff.

A new law aims to help schools better support the needs of students with epilepsy.

All Illinois school staff must be trained in seizure first aid under the Seizure Smart School Act.

The act, which was signed into law this month, takes effect July 1, 2020.

The law also requires parents of students with epilepsy to submit a seizure action plan to their child’s school.

Illinois is now one of four states to pass Seizure Safe School legislation, according to the Epilepsy Foundation of America.

“Each year, the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) serves hundreds of Illinois children with some form of epilepsy,” DSCC Executive Director Thomas Jerkovitz said. “Our staff is ready to partner with parents and school personnel to make sure these children stay safe and well-supported throughout the school day.”

Under the law, a seizure action plan describes the services that a student with epilepsy needs at school and at school-sponsored activities. It should include instructions from the child’s healthcare provider and a copy of any prescriptions and how to give them to the student.

The plan also identifies a “delegated care aid,” who is a trained school employee who can help the student with their seizure action plan.

Families of children with epilepsy who are DSCC participants can talk to their Care Coordinator for help putting together a seizure action plan.

DSCC Care Coordinators can also attend school meetings with families to make sure their child’s educational, social and medical needs are being met.

The Seizure Smart School Act also requires all school employees to complete seizure recognition and first-aid response training.

Read the full text of the law for more details.

The Epilepsy Foundation of America states that about 500,000 children – approximately six in 1,000 – live with epilepsy and seizures. It is the fourth most common neurological disorder in the country and is characterized by recurrent and unpredictable seizures that affect a variety of mental and physical functions.

Original drawings will be featured in DSCC’s new collection of greeting cards.

Calling Illinois artists of all ages!

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) is seeking artwork for our collection of greeting cards. The cards will be sent to our participants, providers and community partners.

Who is eligible?

The contest is open to Illinois residents of all ages. Artists can choose any or all of the six greeting card templates and illustrate what each theme means to them. Creativity is encouraged!

Each template is two pages and includes a release for parents and/or youth ages 18 and older to sign. A signed release must be submitted with the artwork in order to be entered into the contest.

You may click on each template link below to print them out and personalize:

• Congratulations
• Get Well
• Happy Birthday
• Happy Holidays
• Thank You
• With Sympathy

You may also call DSCC at (800) 322-3722 to have templates sent to your home.

How to submit:

Artwork and a signed release should be submitted to DSCC by Sept. 15, 2019.

Mail to:

UIC Division of Specialized Care for Children
3135 Old Jacksonville Road
Springfield, IL 62704
Attention: Amanda Simhauser

OR

If you are a DSCC participant, you can give contest submissions to your Care Coordinator.

Selection process:

Each submitted drawing will be posted on DSCC’s Facebook page .

Drawings that receive the most “likes” by Oct. 15, 2019, will be considered for the greeting cards. Be sure to visit our page, vote and share!

The greeting cards will be given away for promotional purposes and will not be sold. Winners will have a set of greeting cards mailed to the address provided.