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Chloe’s Story of Hope: “Now she can tell us how she feels”

Chloe-AlexisphotoTammy and Mike had wanted a family for a long time. After trying to get pregnant for two years without success, they sought the help of a fertility doctor and were successful the first try. In April 2010, daughter Chloe was born.

“We were so excited and happy!” recalls Tammy.

Four months later, another child joined their family when they obtained parental custody of Tammy’s niece, Alexis. She was only 16 months old at the time and was born with Down Syndrome.

“We knew that we needed to get Alexis the help she deserved medically and developmentally. We set up services for her and began the school year with a 4-month-old and a 16-month-old, not knowing what we were doing,” Tammy said.

Because of Alexis’ special needs, the school district and their local Parent 2 Parent became their new community where they learned about special needs, physical therapy, occupational therapy, speech therapy, and more.

“I think that because of the relationship we had formed with these specialists, it was easier for me to accept that my suspicion of Chloe having autism might be true,” Tammy said.

When Chloe was around 9 months old, Tammy noticed that she would line toys up in a particular way and did not want anyone touching them. As time went on, Tammy also realized that Chloe was not talking at the level they would expect her to be.

They arranged an evaluation by the Birth to Three program to see if she was delayed in any other areas as well as speech. Chloe started receiving services privately as Alexis had been and then started the Birth to Three program.

“As time went on, I began to become more and more convinced that Chloe did have Autism Spectrum Disorder. Others questioned if she did or not, but I did not back down. I knew in my gut that she did,” Tammy said.

When Tammy requested an evaluation for autism through Group Health, the psychologist told her that 2-year-old Chloe was “too young” to be evaluated for autism.

Due to medical issues that their other child developed shortly after this, Tammy and Mike were not able to pursue having Chloe seen elsewhere. It wasn’t until Chloe was 3 years old that they were able to request a second opinion at Seattle Children’s Autism Center.

The full evaluation at Seattle Children’s Autism Center resulted in a diagnosis of Autism Spectrum Disorder.

“I felt validated and relieved to know that my instinct was right and I could now make sure that my child received the appropriate therapies to better help her navigate this world.” Tammy said, adding “We knew that Applied Behavior Analysis  therapy was going to be essential in helping Chloe.”

Their insurance company was Group Health, which now offers coverage for ABA after a legal fight that resulted in a settlement of a class action lawsuit in 2012, just a year before Chloe was diagnosed.

“I am thankful for all of the hard work and dedication from other parents and the wonderful advocacy team at WAAA. If it had not been for attorney Ele Hamburger, WAAA and parents willing to fight Group Health in court to include ABA benefits, I would have had to fight even harder to get my child the services that she needs and deserves,” Tammy said.

Although Group Health offers ABA coverage, it was not easy for the family to find an ABA provider in their area.

“A new Applied Behavior Analysis therapy company called Basics NW opened in our area. We sought their advice and information at their monthly support groups. Once we officially had Chloe’s diagnosis, I requested a referral from Group Health to have Chloe start ABA therapy there,” Tammy said.

At that time, Basics NW did not have a contract with Group Health. Group Health declined Tammy’s request for referral and were told that Group Health already had a company that they worked with for ABA therapy.

The company was farther away from their home and had a 2-3 month waiting list.

“This was not going to work for me!” Tammy said.

Tammy wrote an appeal stating that Basics NW was not only closer to home but could begin services with Chloe immediately whereas the other company could not begin services for 2 to 3 months.

She said the last sentence of the appeal letter was the key phrase that made a difference: “Denying my child to receive services at Basics NW is delay of care.”

“Delay of care, that three-word phrase, is what every insurance company does not want to hear as it puts the liability in their hands,” Tammy said.

Ultimately, Group Health approved their request.

“I was so happy that I could finally start getting Chloe ABA therapy close to home and a lot sooner than I would have had I not fought Group Health’s decision.” Tammy said.

“It has now been more than a year and Chloe has been doing great! ABA therapy has really helped Chloe and the rest of our family. She still deals with a lot of common autism behaviors, but now we have the tools and understanding to help her every day! The best part of it all, Chloe is now able to tell us how she feels and is being able to start regulating her emotions. This is a huge difference from a year ago.”

Tammy adds: “Thank you to WAAA and all who paved the path for families that have Group Health insurance like my family! Without you, I don’t know how our daughter would be able to cope without the tools she has learned in less than a year thanks to ABA therapy!”

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