DSCC taking steps to protect our participants, their caregivers and our staff, including suspended home visits and limiting office visitors.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) has an important update about the coronavirus disease 2019 (COVID-19) pandemic. 

We want you to be aware of some p​recautions we are taking to protect our program participants, their families/caregivers and our DSCC team.   

We are limiting visitors in our office until the guidance changes.  We feel this step is necessary to protect the participants of our program and our staff.

If you arrive at one of our offices, you will be asked to call to tell us more about how we can help you.  

We are also suspending home visits or other face-to-face visits until the current situation improves. 

DSCC Regional Offices plan to remain open.  If we have to close an office, we will still have staff available through our other DSCC locations who can help you get the care you need. 

Since the guidance on ways to slow the spread of coronavirus is evolving, please watch our website for continued updates.  

Our DSCC team remains committed to our mission to partner with Illinois families and communities to help children and youth with special healthcare needs connect to the services and resources they need.

We appreciate your patience and understanding as we all do our part to help slow the spread of the coronavirus.  

Be well!

The count helps support key programs and services for children and families.

Every 10 years, the U.S. Census Bureau counts all people in the United States. This count determines how much federal money is available for services and programs for children, including those with special healthcare needs.

By filling out the 2020 census form, parents can help ensure their children have the resources they need.

In March, the government will send every household a letter in the mail. This letter has instructions on how to fill out the census form.

The form asks for a count of everyone living at the address as of April 1, 2020. The count should include babies, young children and children with special healthcare needs and disabilities.

During the 2010 census, nearly one million young children were not counted, according to the Association of Maternal and Child Health Programs (AMCHP).  

If young children are not counted in the 2020 census, the following programs could lose funds:

• Medicaid
• Children’s Health Insurance Program
• Supplemental Nutrition Assistance Program (SNAP)
• Title I funding
• Individuals with Disabilities Education Act (IDEA) special education funding
• Head Start
• Childcare and Development Block Grants

States and communities also use census data to fund and develop programs and services for children and families.  

All census responses are confidential. Your answers are not shared with anyone and are only used to count the number of people in the country.

AMCHP provides a 2020 census fact sheet for parents. (A Spanish fact sheet is also available.) It explains how the census works, how young children should be counted and confidentiality.

The U.S. Census Bureau also provides helpful resources for parents:

• Census 101
• Counting Young Children
• 2020 Census Safety and Security

You can also watch the Census Bureau video below:

Families can watch video presentations from experts in the field on a range of topics affecting children who are deaf or hard of hearing.

The Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing is a one-week program for parents of children ages 5 and under who have a significant hearing loss.

It takes place on the campus of the Illinois School for the Deaf in Jacksonville each June. Participating parents attend daily lectures by experts in the field to learn about raising a child with hearing loss.

Lecture topics include:

• Individuals With Disabilities Education Act (IDEA)
• Advocacy
• Communication Options
• Language
• Assistive Listening Devices
• Literacy
• Amplification

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC), a supporter of the Institute, is making these presentations available online so they can benefit more families of children with hearing loss.

Videos on each topic are posted on the Illinois Sound Beginnings website.

Parents and caregivers can watch each presentation at their own pace in the comfort of their own home.

If you are interested in participating in the next Institute or would like more information, call us at (800) 322-3722 or email Institute@exchange.dscc.uic.edu.

You can also visit our Events page for more details about the 2020 Institute.

You may also read a recap of the 2019 Institute at https://dscc.uic.edu/institute-provides-support-connection-for-dscc-families-of-children-with-hearing-loss/.

Public input needed for maternal and child health survey

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) wants to hear from you.

We invite Illinois residents to fill out a quick, anonymous survey about the needs of women, infants, children and families across the state.

Your input will help us better understand the health challenges facing Illinois communities. It will also help us determine how new programs and services could help meet communities’ needs.

The survey takes about 10 minutes to complete. Responses are anonymous and confidential. You can click on the English survey link or the Spanish survey link to complete it online.

We are working with the Illinois Department of Public Health to collect survey responses.

This feedback will help guide the work of the Illinois Maternal and Child Health Services Title V Program over the next five years.

We will collect responses through the end of March 2020.

Email DPH.MCH@illinois.gov with any questions about the survey.

We hope to hear from you!

DSCC continues to provide care coordination services and support for affected families.

Illinois children with special healthcare needs who receive Medicaid are now enrolled in managed care.

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.

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

This transition affected participants enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) who both:

• Receive Medicaid and
• Do not have private health insurance

DSCC staff is working with HFS and its partners to continue our care coordination services for DSCC families now enrolled in a HealthChoice Illinois health plan.

We are developing contracts with each HealthChoice Illinois plan so families continue to receive the right support for their unique needs and goals.

We will share more information about our partnership with each HealthChoice Illinois health plan once contracts are complete.

DSCC staff is here to help affected families with any questions about your new health plan.

You may contact your local DSCC regional office or reach us at (800) 322-3722 or dscc@uic.edu.

DSCC’s new greeting cards feature artwork from young Illinois artists

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) is excited to announce the winners of our Greeting Card Art Contest.

The 38 greeting card designs feature drawings from 28 artists ranging in age from 1 to 18.

The cards will be sent to our participants, providers and community partners.

There are at least six designs for each greeting card category:

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

DSCC collected drawings for the greeting cards from Illinois youth all over the state. The drawings were posted on DSCC’s Facebook page. Those that received the most likes were considered for the greeting card designs.

Congratulations to all of the artists!

The winning designs for each category are:

Congratulations

Get Well

Happy Birthday

Happy Holidays

Thank You

With Sympathy

DSCC regional offices work together to provide gifts and Christmas magic to children and families in their communities.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) team is united in our shared mission to improve the lives of children with special healthcare needs and their families.

We take pride in how each of our roles creates a more supportive community for the families we serve.

It’s no surprise that the holiday season brings out the best of our staff’s caring hearts.

This month our regional offices found ways to donate their time, resources and creativity to help local children, individuals and families in need have a wonderful Christmas.

We’re very proud of their generosity and commitment to their local communities!

Lombard

Children staying at Almost Home Kids in Naperville will enjoy some extra warmth this holiday season, thanks to the generosity and creativity of our Lombard Regional Office staff.

Almost Home Kids (AHK) serves as a bridge from the hospital to family home for children with complex medical needs. It provides transitional care in a home-like setting for these children, training for their families and respite care.

Last year in honor of National Family Caregivers Month in November, the Lombard RO staff made 17 cozy fleece blankets for the children staying at AHK Naperville.

The colorful no-sew blankets were such a big hit that the Lombard team once again joined forces to create more beautiful blankets for AHK clients for the holidays.

Lombard Program Coordinator Assistant Kim Firkins delivered the blankets on Dec. 9. AHK staff said that the blankets are a great donation and the children love them.

Springfield and Central Administrative Office

To celebrate the holidays and come together as a team, our Springfield Regional Office and Central Administrative Office (CAO) was on the lookout for a hands-on way to help needy children in the Springfield community.

Compass for Kids provided the perfect fit.

Compass for Kids is a nonprofit organization that works with elementary schools in the Springfield School District to serve students who are low-income with at least one risk factor, which can include homelessness, foster care placement, a parent incarcerated, no food in the house or suspected abuse or neglect.

During the school year, Compass for Kids provides “Club Compass,” in which community partners provide a neighborhood site for one of five elementary schools.

Participating students go to the site after school once a week and receive a snack, a social/emotional curriculum, 30 minutes for homework time and then a life skill from the community. Club Compass students also fill their backpack with breakfast, lunch and dinner items to get them through the weekend, since many depend on their school for regular meals.

When the Springfield/CAO staff learned that Blackhawk Elementary School’s Club Compass site was in need of a holiday party sponsor, they jumped at the opportunity to help.

Our team committed to planning party activities and providing gifts to the site’s 21 students in kindergarten through fifth grade.

The Springfield/CAO office collected donations and raised nearly $600 to provide at least three gifts, including Lego sets, baby dolls, games, journals, action figures, as well as gloves and hats for each student.

Nine DSCC staff members attended the party on Dec. 18 and planned activity stations, including a snowball toss, building a toilet paper snowman and ornament crafts. They also arranged for Santa to come to the party and hand out gifts to each child.

Our staff had just as much fun as the kids. The team was truly grateful for the opportunity to help spread a little Christmas magic to these very deserving children.

Mokena

The holidays have been especially busy for our Mokena Regional Office.

Their staff moved into a new office location this month. But, they still made time to give hundreds of our participant families a wonderful Christmas.

In November, the Mokena Regional office received 200 “care bags’ from Family Focus Aurora. Family Focus is a non-profit that aims to promote the well-being of children from birth by strengthening families in and with their communities.

Mokena Program Coordinator Assistant Leslie Ruelas has a contact at Family Focus and told the organization about DSCC’s program. Family Focus Aurora donated 200 of the “care bags” they had received from another non-profit, Second Bridge, to the Mokena office.

These backpacks were filled with books, toys, personal care items, school supplies, water bottles and blankets for children ages birth to 14.

Our Mokena staff sorted and organized the backpacks. They then handed out the bags to DSCC families throughout South Cook and Will County.

Our families were overjoyed to receive these items.

But the Mokena team’s efforts didn’t stop there. They wanted to provide toys to as many participant families in need as possible.

Staff researched options and became a partner organization with Toys for Tots in Joliet. Through the program, the Mokena RO received toys for more than 125 children.

The team has enjoyed making deliveries in the week leading up to Christmas.

Champaign

The Champaign Regional Office’s holiday giving project will extend far beyond the holidays, bringing joy to local children throughout the year.

The Champaign RO staff learned from local teachers, social workers and child welfare staff that many families in Champaign can’t afford to celebrate their child’s birthday.

“We thought it would be a good idea to compile necessary items, fill gift bags, and allow a local agency to provide them to children/families in need,” Care Coordinator Dan Beagles said.

The Champaign team started collecting gift bags to fill will the following items:

• Cake mix
• Frosting
• Candles
• Plates
• Napkins
• Forks
• Tablecloth
• Birthday card
• Birthday hats
• Various party favors

Champaign staff partnered with CASA (Court Appointment Special Advocates) of Champaign County to help identify children and distribute the bags.

“CRO staff was very generous with their donations, and we were able to put together our first batch of 10,” Dan said. “We hope to continue this project throughout the year if more families are identified.”

Olney

Our Olney Regional Staff consistently puts in extra effort to help families in need. The holidays are no exception.

The Olney team has a long-standing tradition of sponsoring a local family for Christmas. This year they purchased gifts for a family of three.

Olney staff also host a small get-together for its cleaning crew each year. During the gathering, they present them with a bag of goodies such as gift cards, hats, gloves and more.

In addition to these wonderful efforts, our Olney staff was able to give more of their time and contributions to help a participant family in need.

Last week, they received a call from a participant’s mother who needed last-minute help to buy Christmas gifts. The mom had saved for Christmas but had to use these savings to pay an unexpected bill.

The mom called the Olney Regional Office because she knew her Care Coordinator would be able to help. At this time, the local organizations were not taking any new names for their giving tree programs.

Determined to help this family, several Olney staff members decided to buy for this child out of their own pockets.

Rockford

At our Rockford Regional Office, Care Coordinator Audrey Ballard and Program Coordinator Assistant Adriana Londono coordinated their participation in the Adopt an Angel Project.

Adopt an Angel provided gifts to roughly 2,000 Rockford-area children this year through charities including Lutheran Social Services of Illinois’ Children Community Services.

The Rockford RO partnered with Youth Service Bureau of Illinois Valley and adopted 15 children that are currently in foster care in the Rockford region.

The staff could choose a child to shop for based off of their wish list. Items requested ranged from luggage and bed linens to dinosaurs and Barbie clothes. They set a budget of $20-$25 to help spread a little holiday cheer for children who may not receive much this year.

“The generosity and enthusiasm the Rockford office put in supplying these gifts for our adopted angels was truly heartwarming,” Audrey said. “Everyone that participated went above and beyond what was requested of them.”

Peoria

The Peoria Regional Office put their heads together to figure out a different way to spread holiday cheer than in years past.

Instead of an office gift exchange or Secret Santa, the office planned a week of fun activities, such as a hot chocolate bar, making an ornament, hors d’oeuvres and a cookie exchange.

Most importantly, the celebration included a gift donation to our troops overseas. Autumn Fickes from PRO-Core has a son, Taylor, who is currently deployed with the U.S. Army overseas.

The PRO staff asked Taylor and his friends to provide a gift list, and Autumn made a Giving Tree with ornaments for each requested item. Peoria staff then collected items to put in a solider care package to arrive in time for Christmas at their base.

“A big thank you to everyone for their generosity and for remembering those separated from their families during the holidays,” Care Coordinator Meg Tomlins said.

St. Clair

This fall, our St. Clair Office started collecting hats, scarves and gloves for East St. Louis School District students in need.

Their team has collected at least 19 hats and 40 pairs of gloves.

St. Clair’s staff also united to show support for Care Coordinator Pam Wear’s husband, Brian, who is currently deployed overseas. They collected various snacks and comfort items to make a holiday care package.

Marion

The Marion Regional Office worked together to collect food items for Herrin House of Hope. Area churches, business and residents sponsor this organization to help low-income individuals and families meet their basic needs, such as food, clothing and shelter.

Marion staff filled two large boxes with items including cereal, noodles, stuffing, and instant mashed potatoes, so southern Illinois families will have sufficient food over the holidays.

For more photos from our holiday giving projects, visit our Facebook page.

Marcus Theatres offers special moving showings catered to individuals with special needs and their families on select dates.

Marcus Theatres’ Reel Movies for Real Needs is a specially designed program to serve families with special needs who seldom attend movies.

It provides a welcoming and comfortable environment with lower sound and lights up so children who need accommodations and their families can share the experience of seeing family-friendly films at a theater.

Upcoming Reel Movies for Real Needs include:

• Jumanji: The Next Level – Dec. 14
• Star Wars: The Rise of Skywalker – Dec. 21
• Spies in Disguise – Dec. 28
• My Spy – Jan. 11
• Dolittle – Jan. 18
• Sonic the Hedgehog – Feb. 15

A select first run movie is featured one Saturday each month at 10:30 a.m. Visit the Reel Movies for Real Needs website for location and ticket information.

Reel Movies for Real Needs is available at the following Illinois theaters:

• Addison Cinema
  1555 West Lake Street
  Addison, IL 60101
• Bloomington Cinema + IMAX
  1111 Wylie Drive
  Bloomington, IL 61705
• Orland Park Cinema
  16350 South LaGrange Road
  Orland Park, IL 60467

For questions, please call (800) 274-0099, ext. 1.

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.

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.