Special Education: Stories Beyond the Data

Special education preschool has been a hot topic in the last few weeks. The New York Times been covering rising special education costs in New York City’s preschool programs and financial abuses in the program. In June, they reported that “a little-known special education program for 3- and 4-year-olds” cost more than $1 billion per year to operate, double the cost of just six years ago; services for 25,000 children with physical, developmental, and learning disabilities had increased to about $40,000 per child.

The article highlighted irregularities found within program billing; generally, private contractors provide services for these children and bill the city based on the intensity of services. However, according to the Times, contractors had billed the city improperly for non-work expenses and hired family for no-show jobs. Why has this become as large a problem in New York City?

“In most of the country, public school districts provide special-ed pre-K. New York is the only state that turns over the program to private contractors, many of which are for-profit companies. …The contractors often have a dual role: they evaluate children and identify disabilities, and then they deliver services, at costs that are higher than in other states, education experts said….Under this structure, contractors have an incentive to inflate the number of services children require, said Julie Berry Cullen, an economist who has studied special-education spending.” – The New York Times, June 5, 2012

The New York state comptroller has released audits in response to these allegations, and three cases have already resulted in criminal charges against providers accused of bilking taxpayers. In July, Times editorial called for closer oversight of the special education preschool program at the state level, charging that “[w]hen it comes to serving disabled children, every dollar should count.”

Kids who have special educational needs deserve those services, and it is especially heinous when public funds for these purposing are abused. Providers who defraud the system hurt families and kids, and the public’s faith in these programs. The last thing that families who need the special education system need is an additional barrier to fighting for their kids. A recent blog from my cousin drove this point home. My cousin and his wife have two wonderful boys—Bubs 1, who’s just shy of 4, and Bubs 2, who’s about 7 months (my math could be slightly off). In December, Bubs 1’s preschool teacher voiced concerns to his parents that Bubs 1 was displaying some autistic behaviors. Now that Bubs 1 has received an “official” diagnosis, my cousin offered a few reflections that really smacked me, as an early ed researcher so focused on aggregate data, right in the face.

By Ioannes.baptista (Own workhttp://www.aochiworld.com/) [Public domain], via Wikimedia Commons

The System

“Most importantly, we learned how to advocate for him inside the public school domain. You would think that the public schools are on your side. They are, but when state’s make budget cuts, they take money from schools. Special education programs become unfunded mandates and school officials do what they can to limit cost… We’re ready to work with his teachers and continually update effective IEP goals.”

Ideally, families should always be involved and active in their children’s education, but families using the special education system have to always be on guard. Early intervention, diagnosis, and services are crucial to ensure kids like Bubs 1 get the services they’ll need to really thrive. The fact that his preschool teacher was able to raise a flag this early is remarkable, and wonderful, and needs to be the norm—but in the fragmented world of early childhood education and care, where so many providers operate outside of a clear framework, this is woefully uncommon. Special education is fraught with lots of good intentions and just not enough resources to act on them.

Family

“Bubs 1’s mom and I decided to tell our family about his condition early on (before the diagnosis). We listened to family and friends question the likelihood of the bubs having autism. Most of them all said the same thing, that Bubs 1 was just a normal three-year-old. Bubs 1’s mom and I eagerly agreed and, many times, second guessed it all (It was just what we wanted to hear too!).”

This, for me, is where the personal met the political. As a recipient of this email message to the family, it was an odd experience—I was so pleased to see my cousin and his wife being proactive and making this an open conversation though obviously regretful that the expectations they had for their three-year-old were going to need some adjusting. The struggles Bubs 1 may be going through, and so the struggles his immediate family may face, are nothing to be ashamed of, or that can only be talked about whispered and with euphemisms. Autism is incredibly common and yet still so misunderstood, as you can see from the reaction of the family—many of us (myself perhaps included) so instinctively wanted to ensure our loved ones that their son is fine and that nothing is wrong that we did them a disservice. What they needed to hear was that this could be a rough time for them, but that as wonderful and attentive parents, we had no doubt they were going to do everything they needed for their son. Everyone was going to be okay, even if “okay” now isn’t exactly what they anticipated. I’m still not sure exactly what the right thing is to say when a family is suddenly facing something unexpected, but we as a society have to get much, much better at talking about autism and special education openly so we aren’t saying the wrong thing and making things harder for anyone. So props to my cousin and his wife for being open about their lives, which can serve as a teaching moment.

Self-reflection

“At the official evaluation (diagnosis) meeting, I asked if I’ve made this situation possibly worse by not knowing about the bub’s condition while raising him at home. I immediately thought about all the times that I yelled at him or told him that he did something ‘wrong.’ I was concerned that I may have penalized him for something beyond his control. I may have, but I think all parents question their skills at one time or another. Still, I felt a sense of guilt that I may have worsened the situation.”

This would be a tough paragraph to read no matter who wrote it, but to read this from a family member is particularly heart-tugging. My cousin is a stay-at-home-dad and to think he may be beating himself up, when he and his wife have been so proactive and quick to respond to concerns, is heart-breaking. I shared this post with a friend of mine, a special education teacher, who actually got a bit angry at this sentiment. My point here is that every family is going to respond to an autism diagnosis differently, and on the micro level, we all need to do a good job of ensuring we’re standing by these families and not making them feel guilty, or bad, or as if they’re overreacting.

System-wide (which is where my comfort level is much stronger…), this is my major take away as a non-parent: raising children in HARD. Raising children whose development doesn’t quite match what you expected, or how your friend’s children are developing, or may behave differently than the cousins (and boy do we have many!) at family events is only going to be more complicated. I don’t think sympathy is the answer, because that can easily veer into pity, which isn’t helpful. But we could all benefit from empathy: how would you feel if your child needed additional services but the school district made it difficult? What would you want to change if you kept hitting up against these barriers? Empathy needs to beget action Seeing the numbers on diagnosis prevalence rates and per child spending are important to understanding the scope of these issues. But now and then it may take a personal experience to be reminded that these are children and families, and not just numbers, and that the failure of the system to serve them is a failure on all of us.

One thought on “Special Education: Stories Beyond the Data

  1. interesting post. special education students do cost more than the “average” student, but the public schools are to educate all students equally. thanks for the thoughtful reflections. in fact, the teacher also called me prior to our first PPT meeting and told me that I should request a one-on-one aid. she asked that I not mention her phone call, to me, at the PPT meeting. apparently, she was jeopardizing her job by making that call. she just felt that parents have a right to be advised of their rights to services regardless of the school admin’s policy. the school’s admin was not going to offer this extra help (cost) and she knew this. i was impressed with this teacher’s willingness to help our little boy. i immediately made myself familiar with the state’s special education program and learned all the coded terminology that accompanies it. i didn’t want to misunderstand any of the discussions at the meeting. a coded discussion can place unknowing (and trusting) parents on the outside, even while sitting at the same table.

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