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Home Care for a Disabled Child

by Sharon Perkins , studioD

If you have a chronically ill or medically fragile child, home healthcare while you work or during overnight hours may be a necessity. A home-healthcare nurse can relieve some of the burden of 24-hour care for your child, allowing you to have a more normal family life and ensuring that your child receives skilled nursing care. But having a nurse in your home also comes with trade-offs, such as loss of privacy and the need to work closely with your insurance company and medical personnel to ensure your child receives the services he needs.


When you are the parent of a disabled child, acting as your child's advocate for services becomes one of your primary jobs. Read your health-insurance policy to find out exactly what it covers; talk to specialists at the companies who deal with home-health services. Home-health agencies can help you navigate the complex world of insurance benefits. In many states, your child may qualify for medicaid programs that cover home-health costs or for social-security benefits.


In some cases, parents prefer to take care of a disabled child during the day, opting for a home-healthcare nurse overnight. If you work, your insurance company may also cover the costs of day shifts for your child. A disabled child who qualifies for care will normally require care from a licensed practical nurse or registered nurse rather than a nursing assistant, because disabled children often require medications and treatments that a nursing assistant is not licensed to provide.

Setting Up Work Space

If your child spends most of his time in his room, set up a space where your home-healthcare nurse can work comfortably. A chair where she can sit and write notes while still observing your child is essential. Some families also provide a work desk, a TV or a computer for those working overnight shifts. Nurses who work during the night hours should never sleep during their shifts, so there's no need to provide a bed. Set up rules for your child's caregivers so they understand the boundaries in the home -- can they use your refrigerator and microwave, for example? Can they eat in your child's room? What about cell phone or computer use? Some parents set up nanny-cams in their child's room, as well.


Disabled children who remain at home often remain healthier and have fewer hospitalizations than do disabled children who live in nursing homes. One-on-one care allows the nurse caring for your child to develop an individual relationship with him; both parents and nurses will often spot signs of illness or potential complications more quickly than personnel in a nursing home might. A review of studies published in the January to March 2002 issue of "Issues in Comprehensive Pediatric Nursing" found that in scenarios where medically fragile children were living at home, there was reduced parental stress, improved medical outcomes and less costs associated with care in the long run as compared to hospital care.

About the Author

A registered nurse with more than 25 years of experience in oncology, labor/delivery, neonatal intensive care, infertility and ophthalmology, Sharon Perkins has also coauthored and edited numerous health books for the Wiley "Dummies" series. Perkins also has extensive experience working in home health with medically fragile pediatric patients.

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