Parent CEO: Parent Leadership in In-Home Care

Having a child who is medically fragile can affect a household greatly, from the financial resources required for therapies and medical treatments to the family structure and economic status. Twenty-two percent of families with children who are medically fragile have a family member leave the work force in order to care for the child. The divorce rate among parents of children who are medically fragile is as high as 80%, compared to 50% among parents of typically developing children. The statistics are a little startling, which is a strong argument for considering some assistance.

Choosing In-Home Care

Many children who are medically fragile qualify for some form of long-term care, and their parents often have the option to select in-home nursing as a way to provide that care. When it is managed effectively, in-home nursing can become a support for caregivers and families stressed with the care of a child who is medically fragile, while also allowing the child to remain integrated in the community, and the parents to continue gainful employment that supports the economic well-being of the family.

When our son first came home from the hospital, we lived far from all our family members. Even family and friends who lived within a few hours were not able to assist with our son’s care, so we were the only people who could provide care for him. Without family support, we desperately needed the help of in-home nursing and the relief of having someone with more experience dealing with needs like our son’s. This was particularly important because we both had successful careers that we wanted to maintain in order to support our family and enrich our lives. Although it is not always perfect, in-home nursing has made that goal possible.

Becoming a Parent CEO

People have real horror stories with in-home nursing. While some of these awful accounts of in-home nursing are not foreseeable, many more could be prevented. In-home nursing is different from the care a child receives in a hospital. Parents are required to take on a new role when it comes to in-home nursing, the role of a CEO guiding the team toward a mission of excellent care. Horror stories often happen when parents are not prepared to manage and direct their child’s care like a CEO manages a company.

Once you open your home to nursing, you essentially become the employer of a small staff, even if you aren’t signing the paychecks. As in any workplace, the staff needs to know the rules and expectations, and it is your job to set them and communicate them well.

Leadership is the CEO’s main job. No one knows your child better than you do, so you are the primary source of information about your child’s health, and the primary contact for the various physicians, caregivers and services associated with your child’s care. You set the tone for your child’s care and the expectations others have for your child.

In our experience of in-home nursing, we have had successes and failures. We have had to let go of dozens of nurses, but we have found some excellent ones who have provided wonderful care for our son for years. We are successful because we are able to approach in-home nursing with a business sense that makes us focus, always, on the mission: excellent care for our son.

Charisse Montgomery, author of Home Care CEO: A Parent’s Guide to Managing In-Home Pediatric Nursing, is a professional writer, editor, wife and disabilities advocate, in addition to her most important role as mama to Richie. Having lost her sister to fiber-type disproportion myopathy in 2012, she advocates on behalf of her son and in memory of her sister. She has a bachelor’s degree in English from Towson University and master’s degrees in English and Educational Psychology from The University of Toledo, with research focused on empowering parents with medically disabled children. She recently completed a graduate certificate in Patient Advocacy, and she serves on the Lucas County Board of Developmental Disabilities. She can be reached at @madvocator on Twitter, Facebook and Pinterest or through her personal blog site, madvocator.com.