Magazine article The Exceptional Parent

Daycare for Children Who Are Medically Fragile

Magazine article The Exceptional Parent

Daycare for Children Who Are Medically Fragile

Article excerpt

Here's a typical morning for Ellen and her family. Her parents are up at 5:30 a.m. Her mother packs the diaper bag and other essentials for daycare. She wakes Ellen at six for bathing and dressing. Ellen slept fitfully last night. So did the rest of the family.

Meanwhile, Ellen's father starts breakfast - making a special one for Ellen - and wakes Jenny, Ellen's older sister.

What makes this typical morning different are the "other essentials" in Ellen's diaper bag. There's not only a change of clothes, but her feeding pump, tubing, syringes, medications and a special formula. Ellen's "day-care" is staffed by nurses and therapists, as well as teachers.

Two-year-old Ellen has cerebral palsy and gastroesophageal reflux. She has difficulty eating and is unable to hold her head up by herself. Until six months ago, nurses and therapists were in and out of the family's home on a constant basis.

The family lost a needed second income and insurance benefits for Ellen when her mother had to quit her job to care for Ellen. The family felt isolated and powerless.

Ellen's family is not alone. There are more than three million children with chronic illnesses and disabilities who need complicated care. This number is growing as major medical advances increase the survival rate of high-risk infants.

Families struggling to meet the needs of these children often find themselves overwhelmed. Homes become makeshift hospitals and parents become nurses. Parents never leave the kids, and often lose sleep because of the around-the-clock care the children require. The physical drain, financial pressure and isolation can have devastating effects on a family.

An alternative

for families

Medical daycare or day-treatment centers offer an alternative for these children and their families. Although only a handful of these centers are now in operation in the country, interest is growing.

Typical centers operate Monday-Friday from 7 a.m. to 7 p.m. Some offer after-school, weekend and respite services. Most feature indoor and outdoor play areas, separate infant and toddler sleeping rooms, educational activities and therapies. Decors are bright, friendly and resemble typical daycare settings. Nursing stations and treatment rooms are the only obvious indications of a controlled, clinical environment.

Most centers accept children with a developmental age of less than six years who are considered medically complex, require skilled nursing interventions and are technology dependent. Diagnoses may include failure to thrive, multiple congenital anomalies, respiratory conditions, cancer, cardiac disease or other conditions.

Some centers offer care to children with less complicated medical conditions such as those requiring only cardiac-respiratory monitoring. Additionally, "typical" children may also be integrated into the program to promote peer relationships and acceptance.

Medical models

These centers are medical models, meaning they are staffed by nurses specializing in pediatric and neonatal care; physical, occupational and speech therapists; child-life specialists and medical social workers. Some centers also include respiratory therapist.

An average 3:1 child-to-staff ratio is typical, depending on a particular child's needs. Many high-tech therapies can be provided on-site with some centers housing their own pharmacy. …

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