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Helping Children With Special Needs

How to get the support that's right for your family

by Linda Rao

Our 15-year-old daughter was born with severe, but not life-threatening, kidney disease. When she was a baby and toddler, she needed round-the-clock, at-home care, but as she's grown older, her condition has improved. Now caregiving involves working with her teachers, dealing with specialists, and finding other services. Yet we still feel alone. Can you help?

"You're not alone," says Lauren Agoratus, New Jersey coordinator for Family Voices, a national network of families and friends that advocates for disabled children. "Twenty-two percent of American households have at least one child with special healthcare needs."

Some children with certain severe disabilities may, like older adults, require full-time, at-home care, says Agoratus, who is the mother of a special-needs teen. "And many special-needs children have multiple disabilities, such as attention deficit disorder, cognitive impairment, and autism," she says. "For each disease, there can be a wide range of disability, from mild to severe. When you consider the number of illnesses and the range of possible severities, special-needs children may require many different services."

Some special-needs children have challenging requirements that affect how they're taught, what they eat, and how well they sleep. "Some children, for example, may have a hard time swallowing or may need hearing aids, home safety equipment, feeding tubes, or calorie supplements," says Agoratus. "Children who lack muscle strength may also need help with daily activities and use adapted scissors and silverware, pencil grips, and hook-and-eye closures in place of zippers, shoelaces, and buttons."

Your Resources

Your first step, Agoratus says, is to learn as much as possible about your child's disease or disability. "Call disease-specific organizations for more information and ask them what services are available in your area. If you tell them your child has autism, for example, they should be able to help you find tutors or pediatric specialists who work with special-needs children, including physicians, dentists, and speech and occupational therapists."

Many children with special health needs are covered by the Individuals with Disabilities Education Act (IDEA), a national program that ensures services to infants, toddlers, children, and adolescents with disabilities.

IDEA provides early-intervention services for children with disabilities from birth to age 2, says Agoratus. The goals of early intervention include enhancing children's development, reducing educational expenses, and maximizing independent living as they grow up. These interventions also help families meet children's needs.

Under IDEA, public schools must develop an individualized educational plan (IEP) for students ages 3 to 21 who have disabilities. "IEPs can require schools to make adjustments for your child's disability, such as monitoring and modifying his homework, providing social skills therapy, and offering disability-awareness education," Agoratus says. "Although your child is granted these services, it's your responsibility to help teachers and administrators understand your child's needs. Talk to your school principal before the beginning of each school year to discuss your child's plan." For additional resources, contact the organizations listed in "Where to Find Aid."

Regular contributor Linda Rao has written about health, fitness, and caregiving for many national magazines.

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