The System is Failing our Kids

I’ve put off writing about how everything has fallen into place (or not) because I was waiting for it all to, well, fall into place. But, after weeks of going back and forth, we’re still fighting. So, here’s where we are.

For several months, we tried unsuccessfully to get Shane’s bipolar under control to no avail. Having exhausted all local resources, we resorted to finding a residential placement once again to get him stabilized. Just before Thanksgiving, he went to ViewPoint in Utah. Shane’s care at Viewpoint was 100% out of pocket and required payment in advance. It was $37,500 for five weeks of care. Our insurance reimbursed us $9,000 so that left us in the hole $28,500 to get mental health care for our son. With amazing acts of kindness and generosity, a friend set up a GoFundMe that raised $9,000 making it really only $19,500. The team at ViewPoint did an amazing job in a short amount of time with medication and made recommendations for the next step. Shane was able to make it home just in time for Christmas.

We’ve been fighting with our local school district since last August. He started our local school in a contained classroom without the proper accommodations in place that were required by his IEP. They put him in a contained classroom with no 1:1 support, no structure, no visual schedule, no behavioral plan, no calm space, etc. They did not take note of recommendations from Ki Charter where he’d been successful the previous year. They only allowed him to go for 2.5 hours per day and even then called us to come get him and had the police officer intervene when there were behavioral issues. It got to the point where they were only willing to provide him with five hours per week of homebound education. What parent would be willing to accept that for their child’s education?

After many meetings, the local IEP team admitted that they are not equipped to provide Shane with an education due to his learning disabilities and behaviors associated with the combination of his autism diagnosis, ADHD, bipolar and anxiety and recommended residential placement. Federal law dictates that the district pays for 100% of the cost if that’s their recommendation. So, we hired an educational consultant who began scouring the country for programs that would accept him based on his reports and needs. Therapeutic boarding schools range in costs from $75,000-$150,000 per year.

After weeks of applying to various schools, Ashley Barbour at Barbour Consulting found an amazing program near Nashville, Tennessee. Not only is King’s Daughters School a great program for kids with Shane’s profile, but it’s within driving distance from Charlotte and is at the lower end of the amount for annual tuition at $72,000. They even had a spot available for him to start after the winter break. So, we just had to finalize everything locally. We were thrilled!

While Shane was in Utah, in mid-December, we went to our local school for the IEP meeting to finalize his placement in Tennessee as per their recommendation. When we walked in, there were approximately eight people already sitting around the table including a couple we’d never met before. Among them was the district supervisor of Special Education Services. Based on previous conversations, we thought it would just be a simple signing of what we’d all agreed on. They already knew about Tennessee via email correspondence. But, we quickly found out that the local IEP team (that we’d trusted had our best interests at hand) had been coached. The district supervisor first informed us that they would only be willing to pay $32,000/year to King’s Daughters which is the cost of the day program at King’s Daughters. Where was he supposed to live to be able to attend a school six hours away? As the supervisor went around the table, she asked each member of the team what their recommendation was for Shane. The first person to speak was the principal (the one I trusted the most). He said, “I recommend a day educational placement for Shane.” Second person (whom we did not know nor did he know Shane) said, “I recommend a day educational placement for Shane.” Next person was his teacher (whose basic methods did not work with him) said, “I recommend a day educational placement for Shane.” At this point, my usually very patient husband was furious and said, “Stop! It’s obvious you’ve all been coached.” Why? Because if they said only a “day program,” that’s all they have to pay for. But, they’d already said (and written) “residential program” in a previous IEP meeting. They also had said in the same meeting where they recommended a residential program that if they recommended something, they had to pay for it when I voiced concern about it. I was told “not to worry. It was covered.”

Call it a mother’s intuition, but before we went to the meeting with the school that morning, I had contacted an attorney in Lancaster County who works with people with disabilities, Elizabeth Hyatt. I just had a hunch that something was going to happen and that they weren’t going to play by the rules. She gave me some pointers, but more importantly, gave me a copy of 34 CFR Ch. 111 300.302 that says “If residential placement in a public or private program is necessary to provide special education and related services to a child with a disability, the program, including non-medical care and room and board, must be at no cost to the parents of the child.” I printed out a copy of it and highlighted that paragraph. After my husband stopped them, I asked the district supervisor if she was aware of the federal statute dictating special education placement outside of a district. She said, “No.” I said, “Here you go” as I slid the paper across the table to her.

The meeting ended quickly after that. A few choice words were said. Some left. Two members of the IEP team apologized (under their breath). I felt sorry for them. I liked them and I was angry at myself for feeling sorry for them. I can’t imagine ever putting aside my morals and personal convictions for the sake of a job. EVER. But, I’m also incredibly angry and disappointed because they did not fight for our son. Or for our family. I feel betrayed. They chose lack of morals rather than to stand up to their supervisor for what’s right. They know what they said before. They know what we’ve discussed in depth. They know what our son needs. They know we’ll do anything for our son. We just need help that we’re entitled to based on the law. The school psychologist (also one I also trusted immensely) quietly said, “I’m sorry” as he walked us out. My husband said, “No one in there had a backbone. I am incredibly disappointed.”

The problem with this is obvious. Children who require special services that are anything out of the norm don’t get them. The school recommends outside placement and says they’ll pay just for the day portion of $32,000. The program is $72,000. You can’t do one without the other. Most families wouldn’t be able to afford the extra $40,000 so someone has to quit their job and stay home with the child. That means the school is off the hook for having to provide any services now. Many parents don’t know the law and don’t know what they’re entitled to or have the resources to hire an attorney to fight for what is legally theirs. So, the child doesn’t get an education or socialization and the mother (usually) can’t work outside the home and isn’t paying into the social security system so now both end up on Medicaid. It’s a never-ending cycle of poverty.

Since that meeting in December, Elizabeth Hyatt has been fighting with the local district and the State Department to get the contract signed at King’s Daughters for full amount of $72,000. Supposedly, they finally agreed after much going back and forth. Just TODAY (after six weeks), they finally returned the signed contract…the WRONG one showing that they would only be paying $2,700 per month (for the day program) in lieu of the whole cost of $6,070 per month. It’s starting to feel a lot like Groundhog Day. The system is broken. They’re failing our kids. We will not allow them to fail our son. And, when this is all said and done, I will do everything in my power to make sure other families have the resources to fight for their kids when the system fails them, too.

#autism #specialneeds #advocate #iep #elizabethhyatt #ashleybarbour #kingsdaughters

2 thoughts on “The System is Failing our Kids

  1. My heart aches for you and your family, but I am also inspired by the fact that you NEVER quit on Shane. I know it is what parents are “supposed to do,” but that doesn’t make it easy, and many good parents would eventually succumb to the pressures of society and the failing system. You two stick by Shane and continue to pour your souls and hearts into his well being. Thank you for sharing your journey and for helping to raise awareness to others.

    Shane, you are a wonderful boy, and I pray that you will find the peace and tranquility you deserve.

    1. Thanks for your kind words. He’s an amazing little boy and has certainly taught us more about life, love and parenting than we ever would’ve known without him. 😍

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