Project Shui for Tay-Sachs

Home Health Care For Kids With Special Needs

*Video or Pictures of Tay-Sachs

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Tay-Sachs Diagnosis:

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   (from People Magazine 1981)

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Home Health Care For Kids With Special Needs

Pediatric Home Health Care: An Overview

Children with complex medical conditions often need skilled nursing services in order to be cared for in the home setting. This means skilled professional nursing care but it also means a team of respiratory, occupational, physical, and speech therapists may contribute to the care of the child at home.

Pediatric Home Health care...What it isn't:

Pediatric home health care is a professional specialty often misunderstood as a babysitting service rather than the skilled nursing specialty it is. Another fact that is also misunderstood and often understated is how well these fragile children do developmentally when cared for in their own homes surrounded by the love and care of family and friends.

Pediatric Home Health care... What it is:

Pediatric home health nurses virtually run a mini- intensive care from the bedrooms of these medically fragile children. Pediatric home health nurses who provide hourly shift care in the home for children medically challenged often must care for a ventilator dependent child, one who depends on a tracheotomy to breath, or one who depends on a gastric tube for feeding and nutrition. These kids require constant monitoring for adequate breathing and oxygenation and often require frequent suctioning. Skilled nursing in the home setting allows for the parents to go to work, attend school, or get some much needed sleep.

"The challenge in pediatric home care moves from basic survival (breathing) to addressing and enhancing developmental potentials for these medically fragile children in their own home setting." states Tina Gonterman, RN AVP Loving Care Agency.

Federal Guidelines...What this means:

Skilled Pediatric Home Care Agencies abide by federal and state guidelines for Medicare and Medicaid providers. What that means for parents is that the agencies must have strict policies and procedures that they follow in order to be approved to provide skilled nursing for their child.

Agencies must also follow OSHA standards for occupational health and safety. The agency and the staff employed must be compliant with dozens of specific regulations in order to be approved to provide the care needed for a medically complex child. These guidelines and regulations are put into place so that skilled and safe care can be given to every child.

Professional nurses including RN's, LPN's, Respiratory Therapists and developmental therapist working in home care must be at the top of their game when it comes to caring for these children in the home setting, It is a mini intensive care for some of these kids with ventilators, monitors, suction machines, nebulizer machines, tube feedings and pumps and a variety of other equipment needed in the home to provide adequate care. The children are often on numerous medications, have adaptive equipment for mobility, and need moved from bed to chair to bed again several times within a shift often being accompanied to the school setting as well. The care for a child at home is a complex and challenging task, as skilled nurses care for every bodily function and provide for the needs of children who cannot care for themselves.

Terri Forehand is a registered nurse specializing in critical care, pediatric critical care, and pediatric home care. She is a freelance writer based in Indiana. Visit her blog for parents and kids dealing with illness and loss at or her blog for beginning writers at Contact by email at for more information about her writing services. She currently is working on prayer books and both fiction and nonfiction for children.

By Terri Forehand Platinum Quality Author
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