By Rosa Berardi
Senior Program Officer
The Coleman Foundation has long supported organizations that serve individuals with developmental disabilities. Recognizing that disability rehabilitation can be a lifelong process beginning at birth, Coleman has approached and listened to the needs of organizations providing such services in the community. In that exploration, we learned of a one-of-a-kind organization in Illinois called Almost Home Kids.
We first heard about Almost Home Kids through Anne Shannon, an advocate and mother of a child with disabilities and Deborah Grisko, the organization’s newly appointed Executive Director. In 2007, they invited us to their community-based, 12-bed care facility in Naperville. It was started by two other mothers as a place where children with multiple disabilities and those relying on life-saving technology could receive transitional care in a home-like setting.
Photo of Almost Home Kids facility in Naperville courtesy of Almost Home Kids.
Photo of Alo and Volunteer Nusaibah courtesy of Almost Home Kids.
Photo of Leo and Alex, a child life specialist, courtesy of Almost Home Kids.
Photo of Gio with Bethany, a volunteer, courtesy of Almost Home Kids.
Photo of Vintrell with his mother and a clinical staff member courtesy of Almost Home Kids.
APRN Scholars Program, Dr Peter Smith, Jack Kotecki, Niko Dukic and Kate Kennedy. Photo courtesy of Almost Home Kids.
Teaching Families to Care for Children with Medical Complexities at Home
We soon learned from Grisko and Shannon how the facility was successfully addressing one of the most challenging problems faced by families of children with medical complexities: the gap in care. Often, these children either remain in the hospital for up to two years or are placed in an institutional setting, away from their loved ones and the community they know. Almost Home Kids provides a much-needed bridge between hospital and home-based care. It is a place where families, caregivers, and healthcare professionals work together for up to 120 days, learning how to provide specialized care for children in their own homes. Almost Home Kids provides the space and education required to keep families together so that these children can be cared for in their own homes and in their own communities.
This approach also helps with lowering costs. Prolonged hospitalizations are a financial burden on families and the and health care system and come at taxpayers’ expense. We were impressed to discover that Almost Home Kids reports a savings of $10 Million in Medicaid costs each year.
Addressing the Critical Shortage of Medical Professionals Trained for Children Needing Complex Care
Through our relationship with Almost Home Kids, we learned about another challenge faced by families of children with multiple disabilities: the critical shortage of developmental, behavioral, and mental health services. In Illinois, there are more than 14,000 children with complex medical needs, and due to advances in medical technology allowing them to live longer lives, the census is growing 5 percent annually, as is the need for supportive services from the medical community.
To address this, we worked with Almost Home Kids to create the Coleman Foundation Advanced Practice Registered Nurses (APRNs) Scholars Program to educate medical professionals in the subspecialties of Developmental Behavioral Pediatrics, Mental Health, and Complex Care. The program attracts top talent and enrolls qualified participants throughout Illinois and 10 other states, including many professionals from underrepresented groups. Almost Home Kids’s Scholars serve mainly children who are on Medicaid, uninsured, in the foster care system, living on American Indian Reservations, and many who have experienced trauma and violence. The intensive training program has received national recognition by the Pediatric Nursing Certification Board for its rigorous, comprehensive and interdisciplinary approach.
We believe that we best serve people with developmental disabilities when we listen to community advocates like Anne Shannon and look for opportunities to work with responsive and collaborative leaders like Deborah Grisko. We are inspired to see how Almost Home Kids has grown from a small passion project to an organization advancing the field to care for this increasing population of children with medical complexities.