Podcast Highlights DSCC’s Role in Policy Solutions for Children with Complex Care Needs During Emergencies

The MCH Bridges podcast shares the story of how DSCC partnered with parent advocates and state agencies to allow generators to be an MFTD waiver benefit

In August 2020, a powerful windstorm called a derecho struck Illinois.

The storm produced about 15 tornadoes in the Chicagoland area and caused widespread power outages. Many people were without power for multiple days.

After the storm, parent advocate Susan Agrawal compiled feedback from Home Care Program families about how the power loss affected their children and loved ones with complex medical needs. She then shared this feedback with the Division of Specialized Care for Children (DSCC).

DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services (HFS). The Home Care Program serves individuals who need in-home nursing to safely live at home.

Many of these individuals are enrolled in the Medicaid Home and Community-Based Services Waiver for Those Who Are Medically Fragile and Technology Dependent (MFTD waiver). These individuals often have tracheostomies, ventilators, gastrostomy tubes and other medical technology that depends on electricity.

The feedback Agrawal shared showed that many Home Care families wanted the ability to use MFTD waiver funds to pay for power generators for their homes.

DSCC took this feedback, did research and worked with HFS to pursue an amendment to the MFTD waiver to allow waiver funds to cover the cost of generators.

A recent episode of the MCH Bridges podcast tells the story of how this new waiver benefit became available for families. The podcast is from the Association of Maternal and Child Health Programs (AMCHP).

Dr. Molly Hofmann, DSCC’s Director of Care Coordination, Systems Development and Education, co-hosted the episode called “Generating Policy Solutions to Protect Children with Complex Health Care Needs During Emergencies.”

The episode highlights the importance of preparedness, especially in the face of natural disasters or power outages that can severely affect the care of children who are medically fragile and technology dependent.

It features the following DSCC team members and partners:

• Stephanie Leach, DSCC’s Associate Director of Systems of Care
• Courtney Kerfoot, DSCC’s Integrated Program Support Specialist
• Susan Agrawal, parent advocate, Director of the Family-to-Family Health Information Center at The Arc of Illinois and the founder and leader of MFTD Waiver Families in Illinois
• Pam Winsel of the Illinois Department of Healthcare and Family Services

Thank you to AMCHP for highlighting our efforts and partnerships to ensure children with complex medical needs have the life-saving technology they need in emergency situations!

You can learn more about how the MFTD waiver pays for home generators and other important benefits for Home Care families on our Waiver Services for Home Care Families page.