In March 2017, Ms. Coleman’s daughter Justice Hope, who was medically complex and had multiple disabilities, died at age 11. She was the sunshine in the lives of many and communicated using a thousand smiles.
My daughter had access to home health care (HHC) through a Medicaid waiver since she was just two months old. We used a personal care attendant until she was six, when she became medically complex and required nursing care in the home.
I remember thinking that things would somehow be “easier” when that happened—meaning, I assumed that being assessed as requiring skilled nursing care 12–16 hours a day in the home would simply translate into home health nurses like those who cared for Justice in the hospital for the same 12 hours shifts.
Boy, was I wrong.
Filling shifts was nearly impossible. Finding and keeping quality nurses was even harder. Coordinating orders for nursing care, supplies, and equipment between multiple doctors and home was somehow my job; I felt like a sieve. I wondered, does anyone know what is happening in our home? Does anyone know what is happening with HHC for so many others around the country?
It was around this same time that I began to shift my professional life from practicing attorney to family leader. HHC soon became one of my target issues. In this month’s Pediatrics is an article that I joined doctors and families in writing, to shine the light on gaps and opportunities to improve care in the home. The article’s title is “Home Health Care Research for Children with Disability and Medical Complexity” (10.1542/peds.2024-067966).
How does the paper define home health care?
Authors define HHC as the delivery of services, equipment, and supplies in a person’s home and community to treat their chronic medical condition, disability, and acute illness. The article also notes that about 1 in 20 children in the US are discharged from hospital to home with either equipment or home health service.
What is in the paper?
The paper begins by looking at the history of HHC, as well as some of the legal standards that help children access HHC. It then reviews current research on HHC. This research shows problems across the country, such as:
- Lack of funding and training have led to a shortage of HHC providers
- There are often major problems with delays in getting equipment
- Children sometimes remain in hospitals because of lack of HHC
What is in the home health care research agenda?
The agenda suggests research focus on:
- child and family outcomes across the life course,
- health service use,
- models of HHC care provision,
- education and training,
- measurement of HHC access and quality, and
- identification and mitigation of disparities.
With an eye to making change happen, the agenda also offers research questions and gives example studies organized by the National Academy of Medicine’s (NAM) framework of quality across the domains of effective, safe, patient centered, timely, equitable, and efficient care. The agenda also puts focus on the need to partner with children and families in research.
What can you do with this article?
- Read it. There is a lot of information, so think about reading it by section. The tables offer an easy way to look at the agenda.
- If your child receives HHC, take the time to appreciate the history, the law, and that you are not alone in your experiences. Focus on what we can all do together to bring about change and quality HHC.
- Share it with your child’s doctor, with your home health providers, and with your partners in advocacy. If there are specific questions or example studies that might work in your community, be sure to point those out as a starting place.
