Traverse City Record-Eagle

February 24, 2013

Parents fight for autistic daughter

BY JAMES COOK
jcook@record-eagle.com

---- — ELBERTA — Matt and Kelli Stapleton are deep into the fight of their lives, a fight they’re waging for their daughter.

Matt Stapleton, Frankfort-Elberta School District’s principal and athletic director, and his wife must battle insurance companies, bureaucracy, and other barriers to secure expensive care they believe is needed for their daughter Issy, 13, whose acute autism sometimes spirals into violent outbursts that twice resulted in her mother’s hospitalization.

They think they’ve found a treatment facility that could be the breakthrough they’ve long sought: the Great Lakes Center for Autism Training and Research near Kalamazoo. But one thing is missing.

Money. And a lot of it. Nearly $150,000 beyond what insurance and other sources kicked in.

Doctors at the Great Lakes Center said Issy could need as much as eight months of treatment, the Stapletons said. That’s seven days a week, 24 hours a day, at a cost of $765 each day. The center, the believe, could vastly decrease the girl’s aggressive, frightening behavior.

“Nobody has money in their budget for it,” Matt said. (Community Mental Health) said they couldn’t pay for it. The state has said they’re not paying for it. Insurance is not going to pay for it. But since things have gotten so bad, they decided to work together and they took this six-month program and said, ‘We’ll give you 30 days.’ At first we thought it was outrageous. ‘Why are you guys doing this? She’s worth it.’ We don’t want her out of the house. We love her and we want her at home. But we also want it done right. If she’s only going to go for a short time and come home and have the same issues, then that’s difficult.”

They decided a month-long program was better than nothing, and Issy headed to the treatment center on Jan. 14. The Stapletons worry Issy will be sent home early because they’re low on money, thanks largely to the years of traveling and treatment they’ve sought for a daughter who at times displays great intelligence. Over the years they’ve sought help at the University of Michigan and Beaumont Hospital, among other facilities. Matt said they spent more than $60,000 on therapies between Issy’s second and sixth birthdays.

“She is a great kid with a lot of potential,” Kelli said. “She’s so smart. She started reading when she was two. She’s got so much to offer, but her aggression is going to limit her life as much as anything.”

Autism generally doesn’t result in violent behavior, except in severe cases. Issy’s is a severe case.

“It’s a parent’s worst nightmare to love your kids so much, but have them feel at risk when they’re in the house,” Matt said. “I feel like I let my family down when I can’t protect them all; I can’t protect (daughter) Ainsley or Kelli, and sometimes I can’t protect Issy from herself. It’s a horrible feeling, and we’re hoping that this place can not only give her some tools, but also give us some tools to help with that.”

A HOME ON EDGE

Issy’s outbursts used to primarily target her mother and younger sister, Ainsley. She generally leaves brother McEwen, 15, alone, but Matt recently has been on the receiving end.

“When I was home ... I’d be with her most of the time because of the aggressive nature,” Matt said. “By the end, I was as much of a target as anybody. Of course, I can defend myself a little differently. Her brother, though, for whatever reason, since she’s been young, she kind of lets him do his thing.”

But petite Ainsley, 12, doesn’t stand much of a chance against her 160-pound sibling.

“Ainsley is a big target for ... whatever reason,” Matt said. “She loves her sister. God, she really loves her sister. But Ainsley becomes a target because they have that whole prey-on-the-weaker or -smaller. And she also knows that will get a reaction from us, because we have to protect her. There will be times when she’s getting angry; and Issy’s poor situation is that she just can’t rationalize; she can’t say ‘When’ when she’s getting upset. When she’s starting to get upset and we’re trying to calm her down, she’ll look for Ainsley. She’ll look around the room and if (Ainsley) is there, she’ll go over and try to whack her, even though her sister didn’t do anything.”

“She’s pretty significantly impaired with autism, but she understands language and can talk,” Kelli said. “But you can’t really explain to her, ‘Isabelle, you cannot kick ass’.”

Matt and Kelli are determined to have Issy live with them for the rest of their lives.

“She’s gotten to that point where she can’t help herself,” Matt said. “She’s hurting herself and she’s hurting others. She’ll always be autistic and she’ll always be with us, but unless we’re able to get some help for some of these behaviors she has, I don’t even know how to predict how the next 20 years will look like. Right now, this is the first time in a long time we have hope.”

“If she was permanently broken, maybe we could have given up at some point,” Kelli said. “But she’s really not.”

Issy is just a couple inches over five feet tall, but weighs 160 pounds, partially due to medication that causes weight gain. Her size, strength and inability to control her anger twice left Kelli unconscious.

Perhaps as her own effort at therapy, Kelli started her own blog, “The Status Woe”, to chronicle her experiences with Issy.

“I felt like I needed witnesses,’ Kelli said. “If I didn’t survive this situation, I wanted people to know that I was a good mom and I did everything I could do, and I asked for help from all these resources. … I’m grateful people read it and wanted to help.”

UNINSURED

Matt and Kelli have fought insurance companies for years. They have healthcare insurance through Matt’s job as principal, athletic director, football coach and junior varsity basketball coach at Frankfort.

They wrangled 30 days of coverage for Issy’s treatment from Community Mental Health officials through a waiver, but not without a lot of prodding. MESSA, an underwriter that handles Matt’s school insurance, provided two additional weeks of coverage after initially denying the Stapletons’ claim, they said.

Karen Schulz, a communications consultant for MESSA, an underwriter for Blue Cross Blue Shield, declined to discuss specifics on the Stapletons’ case, but said “When determining coverage, MESSA must act with the coverage plan of benefits.”

That’s neither comfort nor excuse to the Stapletons.

“They say, ‘We have to be careful to not set a precedent. If we help Issy, then we’ll have to help other kids,’” Matt said. “Isn’t that horrible? I understand that’s how it works, but wouldn’t it be horrible if they had to help a lot of kids? It all comes down to the dollar.”

Kelli said MESSA agreed to build a safe room in the Stapletons’ house.

“It’ll be a place for Issy to go when she has a meltdown and we can go when we need to be safe,” Kelli said. “I thought that was great, because if she doesn’t get enough treatment and she’s coming home in two weeks … we’re really going to need that.”

Issy’s approaching her sixth week at the Great Lakes Center for Autism, and her family tries to visit her at least once a week.

“Our first couple visits were kind of rough,” Matt said. “She’s like any kid. She misses home and she wants to come home. She’ll throw a little tantrum when she sees us because she wants to come home. But she did a really good job at trying to control her emotions. It showed it was a step in the right direction.”

The Great Lakes Center is led by Dr. Lloyd Peterson; officials there started a program in which Issy is rewarded for going periods of time without aggressive behavior. She receives tokens, and can save them to buy things at the “Issy Store” — like nail polish and coloring books or bigger items if she saves up longer.

It started at two-minute intervals. For every two minutes without aggressive behavior, Issy receives a token.

She also earns extra tokens by doing chores and schoolwork. Fifty-five tokens earn her a coloring book.

“She’s totally getting it,” Kelli said. “She’s getting the concept of saving up the tokens for the bigger things she wants.”

Now the doctors have increased the token intervals to every five minutes, Kelli said.

Kelli said therapists recommend eight months of treatment; she hopes six months will do the trick.

If Issy ends up needing the full eight months, the Stapletons would need to come up with $149,175 beyond the help CMH and MESSA are providing.

“We’re limping along here with getting days,” Kelli said, “and what we need are months.”

Issy would have been discharged this week, if not for an outpouring of donations from the Frankfort/Elberta community, as well as others in and around the community on Lake Michigan in Benzie County.

RAISING FUNDS, RAISING HOPE

Emily Votruba lives near the Stapletons and edits the local paper, Elberta Alert. She noticed Kelli’s Feb. 5 online post that said it appeared Issy would have to leave treatment early.

Votruba wanted to help. She asked Kelli if she could set up a donation link on the weekly newspaper’s website.

Within a day, the account showed donations in excess of $5,000. Now it tops $17,000.

In addition to Matt’s multiple duties at the school, he’s on the village council, and Kelli is on the planning commission.

“They’ve done so much for the community,” Vortuba said, of Matt and Kelli. “People love them and it’s great to have a chance to help.”

Matt voiced a degree of discomfort over the donation campaign, which he figured above all would serve to prod insurance companies.

“It just doesn’t seem right that our working-class friends are sacrificing for Issy to get something that seems so blatantly obvious that she should be getting,” Kelli said. “But rather than see her fail, everybody is happy to pitch in. It’s just so humbling and beyond generous and amazing.”

Grammy-winning rock band Fun. — featuring Frankfort native Andrew Dost — donated an autographed poster that will be auctioned off at a March 16 benefit dinner at the Frankfort Eagles Lodge. The dinner is set for 4 to 7 p.m. and costs $6 per person.

Matt grudgingly accepts Votruba’s fundraising efforts, and seems to understand the family has few avenues to help Issy

“(Kelli) waited to tell me, of course, because she knew I wouldn’t be happy about it. And then she said, ‘You know, you’re going to have to swallow your pride on this one because our daughter needs some help.’ It’s just been unbelievable the response. It’s been overwhelming that we’ve got such a supporting community.”