Research Study Seeks Families to Help Improve Home Health Care for Children

February 29th, 2024

A mother administers food through her young daughter's gastrostomy tube while the little girl lies on her bed

“SafeCare@Home4Kids” aims to understand and prevent safety issues at home for children with medical complexity

A research study is looking for families to help improve home health care for children with complex medical needs.

The study is called “The SafeCare@Home4Kids Learning Lab: Designing Safer Healthcare at Home for Children.” It wants to learn from parents of children with medical complexity about what it is like to care for your children at home, including giving your children complex medication and using your children’s devices. The study aims to find ways to help prevent safety problems with this complex caregiving at home.

Dr. Carolyn Foster of Ann and Robert H. Lurie Children’s Hospital of Chicago is leading the research team. Foster is also a member of the Division of Specialized Care for Children’s (DSCC) Medical Advisory Board.

By sharing your experiences, you can help “SafeCare@Home4Kids” find ways to better support and help parents while reducing problems and challenges at home.

What does the study involve?

Participation in the study will take about one week. For seven days, you will send photos or text-based messages about your experience with your child’s medication-related activities and devices at home. Please note, if you do not have a device, the study researchers will loan you one.

After the week is over, you will meet with research team members to talk about your messages. You will also participate in a “critical decision methods” interview about how you:

  • Identify problems with your child’s medication or device
  • Communicate the problem
  • How you have problem-solved these issues in the past

The research team will keep your answers confidential. If you complete all study steps, you can receive up to $195 by virtual gift card.

How do I participate?

You can enroll in the “SafeCare@Home4Kids” study if you:

  • Speak English or Spanish
  • Have a child who is 17 years old or younger with a disabling complex chronic condition who uses an implanted medical device to receive medication at home (such as a gastrostomy tube)

Please email fosterlab@luriechildrens.org or call (312) 227-2510 to enroll or ask questions.

For more details about the “SafeCare@Home4Kids” study and DSCC’s involvement, please visit https://dscc.uic.edu/dscc-partners-in-research-study-to-improve-home-health-care-for-children/.

You can also see the study flyer for more information.

DSCC Partners in Research Study to Improve Home Health Care for Children

November 29th, 2023

A mother feeds her daughter through a feeding tube in her abdomen as the young girl lies on her back

“SafeCare@Home4Kids” aims to understand and prevent safety issues at home for children with medical complexity

The Division of Specialized Care for Children (DSCC) is excited to partner on a new research study to help improve home health care for children with complex medical needs.

The research team is led by Dr. Carolyn Foster of Ann and Robert H. Lurie Children’s Hospital of Chicago. Foster is one of our Medical Advisory Board Members.

Foster and her research team have received a $2 million grant award to fund the study, called “The SafeCare@Home4Kids Learning Lab: Designing Safer Healthcare at Home for Children.” 

This study will bring together experts and patient families to better understand how family caregivers and home nurses can help identify, communicate and prevent safety issues at home for children with complex medical needs. The study will use this input to create a digital safety toolkit to help support families.

DSCC Executive Director Thomas F. Jerkovitz said DSCC appreciates this opportunity to partner in the study. He said DSCC will share our team’s experiences with families and home nurses who report safety challenges at home.

Dr. Molly Hofmann, our Director of Care Coordination, Systems Development and Education, is one of the participating experts.

“DSCC plays such a pivotal role in supporting care in the home and… is a repository for safety events,” Foster said. “DSCC also plays such a functional role in creating solutions, so it was pretty clear to me I wanted to have DSCC be a partner in the grant.”

Children with medical complexity need substantial amounts of care to live safely at home. In recent years, their families have taken on increasingly more in-depth medical care at home.

“We send patients home with increasingly more complex medical regimes, and families have expressed to us they didn’t have a clear way to get the support they need when experiencing problems at home,” Foster said.

“A lot of our patients have an artificial airway to help them breathe or they have a g-tube in their stomach to help them eat. If that gets clogged or it falls out or the tubing connected to the machine gets broken, then they can’t get the nutrition they need and they end up in the emergency room. And it’s a life-threatening event at home if their airway isn’t working,” Foster continued. “The idea for the study is we want to find out what are the things leading up to when those safety events occur so we can prevent them.”

“SafeCare@Home4Kids” also wants to help improve communication when medical device and equipment malfunctions happen at home.

“Doctors don’t always know, and families might not know that they should or can tell us about it. They might tell the DME (durable medical equipment company) to get the replacement part, but we don’t know about it, so we keep ordering it for other patients,” Foster said. “It’s both an issue for current patients and also an issue for future patients.”

The study aims to create a better system where families can communicate safety problems at home and know who to notify when they occur.

“One of the problems we recognize is families are scared they’re going to get in trouble. We want to make sure they feel supported to let us know when medical problems are happening at home,” Foster said. “The goal is to move past the reporting safety events to preventing them in the first place.”

The study will also host focus groups to hear directly from families about the safety issues that affect them.

“The goal is to hear from real families on what it’s like day-to-day,” Foster said. “Hopefully it’s the beginning of several projects to support how we’re improving care in the home.”

If you are a family member and would like to participate or learn more about the “SafeCAre@Home4Kids” study, you can email Foster at fosterlab@luriechildrens.org.

We are excited to collaborate with Foster and her research partners on this important project. We’ll share more updates and opportunities to get involved as it progresses.

The project kicked off in September and will continue through July 31, 2027.

Tell Us How Illinois Can Better Support Children With Medical Complexity

May 26th, 2021

"We Want to Hear From You" in a text bubble with DSCC logo

Federal funds are available to help enhance, expand and strengthen home and community-based supports for children with complex medical needs

We’re excited to announce a unique opportunity for you to share feedback to help Illinois improve its support and services for children and youth with complex medical needs.

In March, President Joe Biden signed the American Rescue Plan Act of 2021 in response to the COVID-19 pandemic. Under this act, Illinois can qualify for 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 beyond what is available under the Medicaid program as of April 1, 2021.

HCBS includes the waiver for children who are medically fragile and technology-dependent (MFTD). Therefore, the FMAP can provide additional funds to help support children and youth in the Home Care Program and their caregivers.

Illinois must submit its ideas for how to use FMAP funds to the federal government by June 12.

We’ve put together a brief overview of the FMAP requirements. The video features Molly Hofmann, our Director of Care Coordination, Systems Development and Education, and Stephanie Leach, our Assistant Director of Operations for Home Care for our southern offices and our Illinois Department of Healthcare and Family Services (HFS) Liaison.

Please watch their short presentation below –

We’d like to know what you think about the Division of Specialized Care for Children’s (DSCC) suggestions. What concerns do you have about them? What additional ideas do you have?

Please send your thoughts to dscc@uic.edu with the subject of “FMAP Feedback” by June 6, 2021.

For more information about the available FMAP funds, you can review the public notice on the HFS website. The notice includes HFS’s suggested recommendations for improving HCBS services.

HFS also has a form to collect feedback from families, caregivers and other stakeholders. You can download the HFS feedback form and email it to HFS.HCBSWaiver@illinois.gov no later than June 4, 2021.

A note that DSCC’s and HFS’s ideas for improvement are simply suggestions at this time.

Home Care Families: Share Your PPE Concerns

September 3rd, 2020

a stack of three face masks

DSCC provides dedicated email address for families to submit concerns about personal protective equipment

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) team is working hard to make sure our participants’ needs are met during the COVID-19 pandemic.

For families in the Home Care Program, access to personal protective equipment (PPE) is extremely important for their children with medical complexity.

Nursing agencies are responsible for providing PPE supplies for nurses working in the home.

If you have concerns about the PPE supplies provided for your home nurses, please let us know.

We’ve created a new email address for Home Care families to submit these concerns at DSCCPPEConcerns@uic.edu. Our staff will follow up on any reported issues.

Please continue communicating with your DSCC Care Coordinator to discuss any additional issues you experience. We are here to support your family and will work with you to find solutions and the right resources.

We also encourage you to check our COVID-19 Resource Directory often for the latest health information, education guidance and learning tools, financial assistance and parenting/caregiving support.

Important Updates for Home Care Families

August 12th, 2020

A medically complex little boy smiles up at his father while sitting in his arms

DSCC is partnering with HFS to focus on families’ concerns and find solutions to pandemic-related challenges.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) takes pride in our partnership with the participants and families we serve.

Some Home Care parent partners have let us know about recent concerns affecting their children and families. We are working with the Department of Healthcare and Family Services (HFS) to address these concerns.

DSCC’s leadership would like to share the following updates with our Home Care families:

School in the fall

This school year will likely be a very different experience for our participants. With the first day fast approaching, we want you to know that DSCC and HFS are partnering to discuss ways to ensure your family is supported.

The decisions for how schools will operate this fall is up to individual school districts across the state.

We know many schools have yet to comprehensively address how they will handle services for children with individualized education programs (IEPs). Please communicate closely with your school district.

Also, let your DSCC Care Coordinator know if there are ways we can help support you and your child. Our staff can attend school meetings and work with your child’s IEP team to make sure their needs are met.

In a recent notice from HFS, the agency states it will ensure your child receives adequate nursing hours if the way nursing hours are provided in the school setting changes. Some individuals already have this difference written into their 2352. DSCC is working to get this information to HFS for changes to be made.

If your child’s difference in nursing hours from school is not clearly stated in your 2352 allocation, please notify your Care Coordinator so we can work to have HFS review your needs further.

DSCC encourages you to discuss any concerns about your child’s school-related needs with your pediatrician. Your child’s medical team can help weigh the pros and cons of in-person versus remote learning, if applicable.

Personal Protective Equipment (PPE)

Nursing agencies are responsible for providing PPE supplies for nurses working in your home, as always.

With the COVID-19 pandemic creating an increased demand for PPE, HFS has approved an additional $16 per day payment to nursing agencies on the days a nurse is working in the home. The nursing agencies across the state have received guidance on how to bill for this additional payment (a fairly simple process).

DSCC has been communicating regularly with home nursing agencies about the availability of PPE supplies. To date, availability has not been a problem. If you have concerns about the PPE supplies provided for your home nurses, please let DSCC know.

Your Home Medical Equipment company handles providing PPE supplies for your family. You will need an order from your child’s provider for these supplies.

Reminders

HFS received approval for several additional elements to be provided for your child, as needed, as part of Appendix K. Appendix K is an emergency coverage document for individuals receiving services through a Medicaid waiver. Please see a copy of the approved Appendix K document.

A few elements included are:

  • Approval of nurse overtime for nurses working in the home setting at a rate of time and a half (for medically fragile, technology-dependent (MFTD) waiver participants only)
  • Parents who are licensed nurses may be paid caregivers (for MFTD waiver participants and Nursing and Personal Care Services (NPCS) non-waiver participants)
  • Respite hours are increased to 672 per year with respite provided at an increased rate (for MFTD waiver participants only)

Our DSCC team is here to support our Home Care participants and families. We will continue to work closely with HFS to focus on your concerns and find solutions.

We are all facing new challenges as a result of the COVID-19 pandemic. Please continue to communicate with your DSCC Care Coordinator or feel free to contact our administrative team to discuss any additional concerns you may have.

DSCC Helps 4-Year-Old Come Home

January 11th, 2019

Phalynn Graham laughing

Great teamwork helped Phalynn Graham celebrate her first Christmas outside the hospital.

Christmas 2018 was an unforgettable celebration for Phalynn Graham and her family.

It was the first holiday that the 4-year-old was able to spend at home, outside of hospital walls.

Up until this winter, Phalynn had spent her entire life at Ranken Jordan Pediatric Bridge Hospital near St. Louis.

Her homecoming was the result of persistence and teamwork between Ranken Jordan staff, the Graham family, Phalynn’s medical team and her care coordination team from the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

Phalynn was born two months premature, and her lungs were not fully developed. She required constant use of a ventilator to breathe.

Phalynn was soon enrolled in the Home Care Program. DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services.

The Home Care Program partners with families to help them care for children that need shift nursing care at home. The program helps these children live at home with community supports.

Initially, Phalynn’s medical conditions were not stable enough for her to go home. Then, her family needed to find in-home nursing that met Phalynn’s healthcare needs and accommodated her mom, Shay’s, schedule. As KSDK News reported, Shay has lupus and undergoes dialysis three days a week.

Phalynn’s DSCC care coordination team at our St. Clair Regional Office worked to help the Graham family in any way possible. Their efforts included:

  • Following up with available nursing agencies
  • Following up monthly with the Grahams
  • Participating in care conference meetings regarding Phalynn’s care needs
  • Collaborating with Ranken Jordan staff
  • Working with the medical equipment company to ensure Phalynn’s needs could be met at home

With in-home nursing in place, Phalynn was discharged from Ranken Jordan on Dec. 20, just in time for Christmas. KSDK News was there to cover her homecoming.

“It was great,” Shay said, noting they had spent four Christmases in the hospital. “It went well and she got real tired opening her gifts.”

Shay said she is thankful for all of the support her family has received, including from DSCC.

“Everybody has been amazing. Everyone that we’ve come into contact with has been good people to me and Phalynn,” she said.

Our St. Clair Home Care team is ecstatic that Phalynn and her family experienced their first Christmas at home together. They will continue to support the Grahams as they adjust to their new home life.

You can read more about Phalynn’s journey and watch the KSDK News story at https://www.ksdk.com/article/life/heartwarming/4-year-old-girl-goes-home-for-the-first-time-in-her-life/63-5131ec97-8c16-4b94-8a11-a0399822d410.

DSCC Family Writes Book About Their Journey

November 10th, 2017

Nixon Skenderi is being held between his parents, Ozzie and Kristin

“A powerful true story about trusting your instincts, holding onto hope and never, ever giving up.”

After her son, Nixon, was diagnosed with a rare, fatal disease, Kristin Skenderi started blogging and sending her family and friends regular email updates about his condition.

“I wanted Nixon one day to know what he went through,” Kristin recalled.

Her blog posts, emails and journal entries were the early drafts of what was to become a book detailing the Skenderi family’s experiences treating Nixon’s disease and the lessons they’ve learned. “Holding Hope in Our Hands,” was published in September and launched last month.

Book cover for "Holding Hope in our Hands"“I put myself in front of the computer and it took me three years,” Kristin said of the writing process. “It’s a powerful true story about trusting your instincts, holding onto hope and never, ever giving up.”

Nixon was born without an enzyme that helps the brain develop, Kristin explained. At just a few months old, he was diagnosed with Gaucher Disease Type 2, which hindered his breathing, swallowing and neurological development and enlarged many of his organs. Doctors said he likely wouldn’t live past 3 years old.

Kristin said the devastating news put her in survival mode and she began a quest to research every treatment option available. Nixon later received a stem cell transplant and has also benefited from acupuncture, equestrian therapy and hyperbaric oxygen therapy to reduce or stave off some of the effects of his disease, Kristin said.

On Nov. 1, Nixon turned 4 during a trip to Disneyworld through the Make-A-Wish Program. It was the first birthday he was able to spend outside of the hospital.

Kristin’s book details each step of their journey to help Nixon progress to where he is today. She credits the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) with providing the support her family needed so she could have time to research treatment and therapy options for Nixon and write about their experiences.

Nixon is enrolled in the Home Care Program, which DSCC operates on behalf of the Illinois Department of Healthcare and Family Services. The Home Care Program allows youth who require skilled in-home nursing to remain in their family home rather than a hospital or skilled nursing facility.

“The things (DSCC) can offer and help us with – it’s been huge,” Kristin said.

DSCC arranged for the installation of new electrical outlets in the Skenderi’s home to handle Nixon’s medical equipment. DSCC also covered the cost for an exterminator as well as a wheelchair ramp for the family’s home.

“It’s amazing that there’s a resource out there for families like us,” Kristin said. “Because those things were taken care of by (their Care Coordinator) Beth, I didn’t have to worry about it and it gave me more time and effort to work on trying to find solutions for Nixon.”

You can learn more about Nixon and his family’s journey on their Facebook page.

“If this book helps the average, regular person look at life a little bit differently, or I can find that one family who was ever put in a situation like ours and give them courage to fight a little harder, then this book was 100 percent worth it,” Kristin said.

Congratulations, Skenderi family!

DSCC Teen’s Princess Dream Comes True

May 30th, 2017

News story captures Trinity’s special send-off to Disney World.

Trinity Alston always wanted to be a princess. Thanks to Make-A-Wish, she and her family recently traveled to “The Most Magical Place on Earth” to make her dream come true.

Trinity, 15, has a structural defect in her brain called Chiari malformation, which causes brain tissue to extend into her spinal canal. She is quadriplegic and non-verbal and uses a computer to speak with her family and caretakers.

Rockford’s 23 WIFR news station covered the community’s special send-off for Trinity, including a motorcycle escort, before she and her relatives boarded a plane to Disney World in April.

For nearly 10 years, Trinity and her family have received support through the Home Care Program, operated by the University of Illinois at Chicago’s Division of Specialized Care for Children on behalf of the Illinois Department of Healthcare and Family Services.

We are thrilled to see Trinity receive the royal treatment she deserves!