Today Chloe is a happy, enthusiastic second grader who enjoys art, play dates with friends, and going to school, thanks to one determined momma who refused to give up.
Chloe was diagnosed with autism at age 3. Her mom Amy says by 2 years old, they noticed that Chloe was having difficulty communicating compared to other kids the same age. Her parents decided to seek help when Chloe was unable to respond in any way to very simple questions.
They started Chloe in a developmental Birth to Three program at Boyer Children’s Clinic, where she attended a preschool program and received occupational and speech therapies. When she aged out of that program, Chloe entered the Shoreline School District’s early childhood program.
Around 4 years old, Chloe seemed to need more opportunities for reciprocal conversation so her parents found a daycare where the lead teacher had a background in special education. Chloe’s communication skills flourished.
Her mom remembers at that time using the Pink Panther cartoons (which Chloe loved to watch) to teach her about questions. Her parents would watch the cartoon with Chloe and ask questions about it. Eventually, Chloe learned how to ask her own questions and how to respond to others’questions.
For kindergarten, Chloe attended their neighborhood school in a mainstream classroom.
“Her teacher really understood and nurtured her. Chloe made friends, was part of a group, and had a really good year,”said Amy.
But in first grade, after the first two weeks, Chloe had a hard time working independently. She started getting up during class, wandering and being off task. She was sent to the office frequently, which worsened her behavior in class.
“I started getting a lot of emails. No one at the school knew what to do and they lacked training in working with kids on the autism spectrum. Chloe’s behaviors were seen as intentional and naughty,”said Amy.
Chloe started to get suspended –14 times total that year. In the first three months of school, she spent more than half her time in the office. By December, the school notified Chloe’s parents that they were changing her placement to a classroom for emotionally and behaviorally challenged kids.
Prior to this change in placement, the school never conducted a new Functional Behavior Assessment, Behavior Intervention Plan, or any other evaluations.
“We knew this wasn’t right for Chloe because the problems she was having were directly related to her disability, the school staff were not understanding or accommodating her autism,”said Amy.
Amy consulted with a school psychologist outside of the district, who recommended they request an independent educational evaluation (IEE) paid for by the district.
“He told us that kids with autism should be granted a ‘wider freeway’ in terms of behavioral expectations.”said Amy.
In response to their request for an IEE, the district filed a due process against them.
“I know now that this is a common tactic to get parents to give up. In fact, a due process can be more costly to the district than simply paying for the IEE. At that time I decided we had nothing to lose by moving forward with the due process and decided to proceed even though we could not afford an attorney,” Amy said.
She notes that after the first phone call with the judge, the district all of a sudden offered to pay for the IEE. The settlement agreement was very simple and only said that the District agreed to pay for an Independent Educational Evaluation.
“But what I didn’t understand at the time was that there are a variety of IEEs and the district was only paying for an evaluator to look at Chloe’s placement, not the full psycho-social educational evaluation and Functional Behavior Assessment I was led to believe,” Amy said.
Around this time, Amy was calling around everywhere to get help and understand their rights.
“I was referred in circles, until I called WAAA. I connected with Arzu and she helped me understand that there were different kinds of educational evaluations and what a good evaluation would consist of.”
“WAAA was the only organization I found where I connected with someone who could help me at a time I really needed it,” Amy said.
Empowered with vital information, these days Amy is able to help other parents in similar situations.
“If you do request an IEE, specify exactly what kind of IEE you need, or you may just receive a bare bones version that does not include what you wanted in the first place,” she advises.
Fortunately, the independent educational evaluation ultimately recommended the school could not change Chloe’s placement without first staff receiving training in educating students with autism, writing measurable goals, taking objective data, completing a full psycho-educational evaluation and FBA. The school tried not to schedule the required the feedback meeting and refused to even acknowledge the IEE. Within days of receiving the report, the district representative sent Amy an email saying the IEE was complete and Chloe would be moved to the self-contained program at the beginning of the next week.
“We filed our own due process request. We listed all the violations by the school district and were helped greatly by the information in the IEE report. I had been keeping a journal all this time documenting everything, and spending many midnight hours reading the Washington Administrative Code and autism educational manuals,”Amy said.
For compensatory services, they requested the school district implement all of the IEE’s recommendations: staff training and oversight by a Masters level BCBA, a full psycho-educational evaluation, rewrite Chloe’s IEP, develop a positive behavior intervention and motivation plan, and provide her with a fresh start in a new school. They agreed to a settlement conference with the judge and ended up getting everything they had asked for.
Chloe and her little sister
“At her new school, you’d never know there was a problem. The district contracted with The Brooks Powers Group, and with their help, a positive motivation system was put in place based on a 5-point scale. Chloe earns a trip to the treasure chest for staying at a 4 or a 5. She has been given more support, including a daily social skills group, and it has made a huge difference. We are blessed with amazing teachers and Chloe is thriving. She has formed many new friendships,”Amy says.
While the school situation was resolved, Chloe’s parents faced a new issue with their insurance company.
Chloe’s occupational therapist had recommended weekly OT visits for a year, but the family’s insurance limited OT visits to a maximum of 20 per year.
Amy submitted the letter of medical necessity to the insurance company, but they still denied it, saying the policy limited them to only 20 visits.
“I was so fed up dealing with bureaucracy at this point after my experience with the school district,”Amy said.
“On the denial letter, I saw that the two choices listed were to either appeal through the insurance company or file a complaint with the Washington State Office of the Insurance Commissioner. I felt appealing with the insurance company would only yield the same result again so I decided to file the complaint with the Insurance Commissioner,”Amy said.
She said it was actually a fairly easy process to file a complaint and she was able to do it online at night. In preparing the complaint, she relied on information she learned through WAAA, especially conversations and emails with Trish, a WAAA advocate.
"I cited the Washington Mental Health Parity Act and argued that autism was a chronic neurological condition and should not be subject to a 20 visit maximum. I sent in all the pertinent documents including the letter of medical necessity from her doctor,”she said.
The Insurance Commissioner contacted the insurance company (FirstChoice). After some back and forth, the family ended up getting 20 more visits covered, which was almost a whole year. But Amy had to do extra follow up to get the insurance company to actually pay for what they agreed to.
All of these struggles have strengthened Amy’s resolve to move forward and help others in similar situations. Through WAAA, she connected with other parents in the Shoreline School District, and together, they were among the founding members of the Shoreline Special Needs PTSA.
“I’m excited about the Shoreline Special Needs PTSA. It gives us the means to advocate for all kids and provides an opportunity for parents to connect with one another for mutual support. Our mission is to foster communication and collaboration among parents, students, teachers, schools and the community to support students with special needs,”Amy said.