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.

Special delivery : Pediatric dentists try to give kids the care without the scares

Raquel Gari and her husband took their son, Jacob, for his first dental visit when he was 2.

“It was traumatizing to him,” she remembers. “He got sick to his stomach, he was so nervous.”

It didn't help that she and her husband have their own fears of the dentist, “but we knew we had to do it.”

After that bad experience, the Garis started searching for another dentist. Raquel asked about 100 parents for recommendations and found that most of them had not yet taken their young children in for treatment.

“Most of them had the same fears I had about going to the dentist,” she says, and were delaying that first visit.

That's not always possible for families who can't find a dentist who will take their insurance or have no insurance at all, but the foundation is among those advocacy groups working on that, too, because the American Academic of Pediatric Dentistry recommends that children see a dentist after the first tooth appears or by age 1.
The Garis know that now, and they know that Jacob's cavity probably was the result of on-demand breast-feeding in the night, with no cleaning of his teeth afterward, leaving milk sugars to eat away at the enamel of his teeth, making him vulnerable to decay. The same is true, say dentists, for children who toddle around all day and go to bed at night, with a “sippy” cup of juice. Juice is good for kids, but the sugary liquid constantly bathing their teeth is not.

Del Fierro says the increased attention on dental health issues specific to children came about because, while the general population is enjoying a decrease in cavities, children are not.

“The main thing for earlier visits is to educate parents to prevent progression of tooth decay. I see a 3-, 4-and 5-year-olds with rampant decay – in neighborhoods where you wouldn't think of this as being a problem.”

Some of the push for earlier visits is due to the development of the pediatric dental specialty. There are about 400 of them throughout the state of California, says Cohen. His organization, pediatric dentists and others have campaigned for more public awareness of the need for even infants to get that first assessment.

“The general thought before was the kids weren't cooperative until age 3,” says Dr. Jean Chan, a pediatric dentist in El Cajon, who treats quite a number of children 2 and younger.

The first things these professionals say to do is find a dentist, one you trust and one who makes your child feel comfortable. Even if it takes visiting several offices. And determine whether, given your insurance coverage and personal preferences, whether you want a general or pediatric dentist. That, too, may take a few visits.

Make appointments early in the day when the child is well rested.
Please do not bribe your child to go to the dentist or threaten a visit as a punishment.

Del Fierro explains that “a lot of the first visit is a routine type of exam. We look at the teeth, if they have them, and make sure they look normal, sometimes we clean the teeth or do a fluoride treatment.”
And there always is a lot of talk about diet and properly brushing and flossing. So much so, say the Reis and Gari families, that their children bug them if the parents dare to forget the rituals.

Chan's office does what she calls an orientation visit.

“It's free,” she says. “The parent comes in with the child, we walk around the office; we show on a stuffed animal what to expect at the first visit; and we mimic what we're going to do. It takes about 15 to 20 minutes.”
Chan says it's all about de-sensitizing the children, helping them feel comfortable and safe.

“I taught swim lessons when I was younger, and I had to teach children to get over their fear of water,” says Chan, who takes the same approach as a dentist. “If we do our job right, we build a relationship – with the parent and the child. We work together to get the job done.”

HELPING KIDS CARE FOR THEIR TEETH

Pediatric dentists Jean Chan and Dino Del Fierro both address the importance of brushing and flossing with new patients and their parents. And they encourage parents to not only model those behaviors but also do them for their children until youngsters are able to use dental products on their own. Here are some tips on caring for kids' teeth.
After the first teeth appear, the doctors say it's crucial for parents to wipe the teeth with a washcloth after an infant drinks milk or juice to remove the sugars inherent in both.
In between meals and after brushing your teeth at night, stick with water for drinking purposes.
When it comes to brushing, use a soft-bristle brush that is the right size for the child's mouth. “If the brush is too big, it can't angle properly in a small mouth,” Chan explains. “Look at the packaging. Usually ages are printed on the package.” The dentists says electric toothbrushes, toothbrushes that play music indicating how long to brush, and those with a favorite cartoon character all are fine if they get the child to brush.
Once there are enough teeth in the mouth, they'll contact with one another, and that's time to floss. “A toothbrush can do an effective job of cleaning the teeth, but flossing is important once those back teeth are in,” says Del Fierro, who urges parents to do the flossing on their kids. “When the time does come for them to do it on their own, it will already be part of the routine, part of the process.” Once a day, at night usually, is fine for flossing, the dentists say, and there are products that help. “A floss handle, or dental floss, whatever works for a parent in a small mouth,” says Chan. The Crest Glide Floss Pick is good for smaller mouths, she says, and the Reach Access Flosser works on older children.
The best “product” is the example set by a parent. Margaret and Juan Reis' 3-year-old son, Marcanthonee, taught them that. “If I forget, he won't let me,” says Margaret. “He'll say, 'You've got to brush my teeth and floss me!' ” The dentists agree with Marcanthonee. “Parents should be responsible to brush their children's teeth until they can write their name in cursive,” says Chan. “Kids don't know how to do it well. They can't do the gumline; they can't always hold the brush at the proper angle, until they are between 7 and 9 years old. Then they have the motor skills to do a thorough job.
– JANE CLIFFORD