Living in the Spectrum: The cost of care - WQOW TV: Eau Claire, WI NEWS18 News, Weather, and Sports

Living in the Spectrum: The cost of care

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Eau Claire (WQOW)- The cost to care for a child with autism through his or her lifetime can top $2 million.  It's a cost that can be reduced if treatment and therapy are provided at a young age.  But, a number of families are being denied the coverage for services they say their children desperately need now.

This year more children will be diagnosed with autism than with aids, diabetes and cancer combined.

Those numbers seem staggering but there is another number many parents of children with autism worry about and it comes in the form of a bill.  "My son goes to four therapy sessions a week so you could probably easily say around $500 a week," says Amanda Poppe, who's son Colten was diagnosed with autism just before turning 3-years-old. On average, autism costs a family $60,000 dollars a year. That's according to autismspeaks.org.

There are county and state programs available to help cover the costs of speech, occupational or physical therapy. Many parents, including Danea Hamholm, will admit it can be confusing to navigate. "You need someone to kind of take your hand," she remarks. "When you get that medical diagnosis they should be giving you a binder and saying ok, this is what you need to do."

Medicaid is the largest funding source in federal and state developmental disabilities systems. It's also the lifeline for most people with autism.

"Eligibility really is based on the child's diagnosis and the child's functioning and the difficulties that they are experiencing," explains Bill Stein of Eau Claire County's Department of Human Services. "Some families have private insurance and have the ability to have some of these services covered but I'd say that the majority of families that we see really need this type of service."

But the funding is not guaranteed. And sometimes, an autism diagnosis is not enough to qualify for help. "It is just heart wrenching because there is no reason that a family, just because their child is on the spectrum, can't put away money for retirement, can't put away money for their other kids hoping to go to college," adds Danea. "There is no reason that there should be such a financial strain when all you're doing is trying to make your child's life better."

Colten Poppe has been repeatedly turned down for medicaid assistance to help pay for occupational therapy. "We would put it in to the state and it would get denied," recalls his mother, Amanda. "We got denied over and over and I put in appeals, even went before a judge with our appeal and we were denied again."

A simple skill, like tying your shoes, can be very difficult for a child with autism. The coordination and strength needed to grasp a shoelace, is something an occupational therapist can teach. The Poppe family sent a request to the state asking for assistance in paying for therapy that would help Colten master that skill. "There is so much more that goes into tying your shoe then you realize," explains Amanda.  "And the response, along with the denial letter I got, was a print out of a Google search on how to tie your shoes. From the state. That was probably one of the most upsetting responses I ever got."

The family decided they would pay for Colten's occupational therapy out of pocket and they cut corners anywhere they could.  "We still have appliances we would like to replace," says Amanda. "I have a fridge that's half broke, but those are things that I look at it and say that can wait. This can't wait."

Providers, like Becky Lundeen at Nature's Edge Therapy Center, have also expressed disappointment with the system. "If I do an appeal for a family to help them fight a denial, which we all agree at Nature's Edge to do, a lot of the other clinics won't do it because it's so time consuming. It can take three hours to write an appeal and we get nothing for it. Medicaid does not pay for consultation or paper work time." Becky continues, "Our state does not have much money and what's happening is, the school receives funds as well from Medicaid. So if they're being seen in the school, Medicaid right now is denying many private therapy requests."

Each year Wisconsin sets aside money for autism spectrum services, but it's not enough to meet demand. In the most recent state budget Governor Scott Walker called for fully funding Wisconsin's family care program but restricting that funding to current enrollees.

After nearly two years of denial letters, the Poppe family got some good news. "We were scraping by, I have to say it literally was paycheck to paycheck," remembers Amanda. "And then I got the phone call from his occupational therapist. She called me and said, I put in a PA request and Colten got approved."

"I just started crying," admits Amanda. "I really did. I just absolutely could not believe it, after years of trying."

That means Colten will now be able to build on the progress he's made at a much lower cost. "If he lives with me forever I would be happy," says Amanda. "And if he wants to go to college and have a family I would be happy. Seeing him being healthy, learning and enjoying life is enough for us."

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Eau Claire (WQOW)- It's been called the fastest growing developmental disability in the country. One in 88 children falls somewhere on the autism spectrum.

For boys that chance jumps to one in 54.  Numbers aside, scientists are still searching for what causes autism. "Genetic factors are very important," says Dr. Richard Besser, ABC News' Chief Health and Medical Editor.  "We know that autism runs in families. It's more common in boys. A parent's age matters. As fathers in particular get older and hit 40 the risk goes up. And then spacing between pregnancies. If you have children closer than every three years the risk goes up too."

Colten Poppe's autism diagnosis came just as he was about to turn 3-years-old. At the time, his mother says she was in the dark.  "I didn't know what to do," admits Amanda Poppe. "I didn't know what kind of therapies he needed. I didn't know anything."

An autism diagnosis can be the key that unlocks another puzzle and a whole new set of questions. Eating a meal, writing, reading a book. These are things that, with a little practice, come easily for most. For a child on the spectrum they present an extra challenge. 

"Eating, dressing. We didn't understand why he didn't want to wear shoes or clothes," recalls Danea Hamholm. "It was just, everything was so hard." Soon after Austin Hamholm's autism diagnosis the family found Nature's Edge where Austin is making progress.

"We opened Nature's Edge in June of 2001 and reason being, I was a speech therapist in private practice and wanted to do something different," explains the therapy center's director, Becky Lundeen.  "The uniqueness is really trying to replicate what a patient already has at home. And trying to ensure that we have functional goals. A lot of the time in the hospital and a nursing home setting and a school setting we're limited by the four walls of an office."

On the outskirts of Rice Lake, down a winding dirt road, there is no office in sight. What you will find is room to breathe and plenty of room to ride.  "Hippotherapy means treatment with the help of a horse," continues Becky. "A lot of my children have their first words by being on the horse. Because the movement, the rhythm, the atmosphere and just giving that command to that animal. They'll say 'go' they'll say 'hi' and all of a sudden we can spark those words to get that motor planning going."

Not only innovative in method, but in approach as well.  Becky says occupational, physical and speech therapy at Nature's Edge is 100 percent family oriented. "When they come to our place there are forms on our website that they agree to sign that they are an integral part of that therapy. They cannot drop that patient off. So we work together as a team and that's what makes us successful and makes us progress. And it's the best part of my job because I feel like I'm making a difference." 

An autism diagnosis is one that can lead to so many questions for parents. "Right now we're thinking is he going to be living with us? Is he going to be able to drive? There's just a lot of things," says Danea. 

Those questions are tied to larger worries that financially, the ability to shape the future could be out of reach. We will examine that Tuesday night at 10 as Living in the Spectrum continues. 

 

 


 

 

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