Parenting and the high cost of autism

education, a release to adulthood. When upon this cycle is added the filter of autism, those concerns and costs easily balloon, sometimes to unmanageable levels.

Today 1 in 150 children is diagnosed with autism, with a new case diagnosed every 20 minutes and is the fastest-growing developmental disability in the United States. Autism is characterized by impaired social interaction, problems with verbal and nonverbal communication, and unusual, repetitive, or limited activities and interests.

Because autism is a neurological condition and can be triggered by multiple factors, there is neither single cause nor single therapeutic treatment for improving the lives of those with ASD. Rather, there are multiple options, various possibilities that – based on the severity of the individual’s autism – may have differing results. One thing is clear, early identification and intervention is a key component in affording a better opportunity for mainstreaming into general society. This education and these therapies, however, are often times quite costly, sometimes ruinously so.

Children, ages 5 to 11, who attend the Brooklyn Autism Center Academy which offers intensive educational instruction as one example have an annual tuition of $85,000 per year. Individual therapists can easily run $100-200 or more per hour, with a child’s needs easily requiring dozens of hours a week in therapy. While there is a general tide – slowly turning – for health insurance companies to cover some of these costs, there is no universal coverage across every state in the country, and many therapies are not covered at all. Families are often forced to choose between financial stability and going out of pocket for treating their child. It is not uncommon in this cycle for families to dig themselves into debt, sell their assets, and in some cases be forced into foreclosure or bankruptcy over the medical costs incurred in seeking to better their autistic child’s circumstances.

The costs for a child with autism only continue on as that child grows into an adult, as more social services are required for that person over his or her lifetime. According to a Harvard School of Public Health study published in the Archives of Pediatrics and Adolescent Medicine in the spring of 2007, the typical American spends about $317,000 over his or her lifetime in direct medical costs, incurring 60% of those costs after age 65 years. In contrast, people with autism incur about $306,000 in additional direct medical costs, implying that people with autism spend twice as much as the typical American over their lifetimes and spend 60% of those incremental direct medical costs after age 21 years. The societal costs to support a single person with autism is $3.2 million over his or her lifetime, and as a group, upwards of $35 billion each year in direct (both medical and nonmedical) and indirect costs to care for all individuals diagnosed with ASD.

There are organizations, such as Easter Seals, that provide a variety of services and programs to help defray some of these costs, as well as new organizations such as Aid for Autistic Children Foundation, Inc. that seek to help those families who are in financial distress from helping their children. More such programs need to be created and supported to aid not only those with autism but the families that are bearing the financial burden of guiding these children into adulthood.

Schools will lose nurses as their roles become more demanding than ever

HAMPTON — A brown-haired girl muffles a constant cough as she walks into the clinic at Booker Elementary. She shows a freshly-ripped thumbnail to the nurse.

Martha Wayman bandages the thumb, listens to the girl's lungs with a stethoscope, then calls her mother to recommend cough medicine.

Next year, students may not find such quick help when they stop by their school's clinic.

Every school will open with a full-time nurse but may lose them through attrition. When nurses resign, schools with 299 or fewer students will be allotted a half-day nurse. Four schools have enrollment lower than 300 in Hampton.

The shift is a casualty of a $7.6 million shortfall in the district's budget.

Losing full-time nurses will move the 22,500-student school system at least a decade back in progress, said Linda Lawrence, the district's health services coordinator.

The responsibility for health care will fall to teachers and secretaries if a nurse isn't available, Wayman said, and staff will have to dial 911 if they can't handle a situation.

At Booker, Wayman works daily with two diabetic fourth graders. They measure their blood sugar in her clinic, count carbs after they eat lunch and calculate how much insulin they need.

Students with asthma drop by her office to puff on their inhalers. Others come in with stomach aches to lie down. A line forms after lunch time of students who need daily behavior medication.

Chronic illnesses have shot up in the past few years, Lawrence said. As of October, there were 3,300 asthmatic students and 780 received inhalers at school.

There were 149 students with documented seizure disorders, 1,612 students with Attention Deficit Hyperactivity Disorder. About 140 students have epi-pens at the school clinic for severe food allergies.

Without a full-time nurse on staff, the burden to treating students will cut into a teacher's day, Wayman said. She's worked at Booker for six years.

"It'll be hard for everybody," she said. "If the kids are sick, they may not be learning. I just don't think teachers should have to be nurses, they are busy, busy, busy."

Fourth-grade teacher Nancy Trimble has worked at Booker for 36 years and remembers the days when nurses weren't there full time.

"Now we much more readily send a child to the clinic because we know there's an expert there," she said. "If someone's not there, we'd have to screen them more carefully, which takes us away from instructional time."

And since she's not a triage nurse, Trimble said there's more room for error when untrained staff members treat children.

She sends children to Wayman about three times a week for everything from diabetes treatment to sore throats.

"She's very alert to every child's needs," Trimble said. "She personalizes every child."

As more parents lose jobs and insurance because of the economy, Wayman anticipates them depending even more on school nurses.