Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Thursday, December 16, 2010

It's Expensive to Be Special

I don't know who Juan Gonzales is, but Wikipedia, source of all of the world's knowledge, says he is "an American progressive broadcast journalist and investigative reporter. He has also been a columnist for the New York Daily News since 1987. He co-hosts the radio and television program Democracy Now! with Amy Goodman."

Juan Gonzales recently wrote this article about Special Education in New York City and the tax payer dollars that are used to pay for private special education schools. Juan (I feel we are on a first name basis since I now have read his entire Wikipedia profile) is very vexed at the distribution of the tax payer funds and takes issue with the fact that there are more funded special ed children in wealthier public school districts than there are in the poorer public school districts. Why is Juan surprised by this? I am going to make a leap here that Juan has never had to navigate the special education system. If Juan had ever had to navigate the world of special education funding and school selection, Juan would know that the hurdles in the process make it almost impossible for a parent in a lower economic group to survive the process, or even engage in the process.

We all know that every child is entitled to a Free and Appropriate Public Education. Any parent who has been thrust into the world of special ed quickly figures out that getting a Free and Appropriate Education for your child with special needs is virtually a full time job. And there is the first hurdle.

How do you decide that your child would best be served by a special education setting? Probably your child has already been receiving some services either through Early Intervention ("EI") or later through the Committee on Preschool Special Education ("CPSE") . This is often the first hint that your child may be heading to a special education school. In order to determine what kind of special education your child needs, you are counseled to have a Neuro-Psychological evaluation. Now stay with me here .... the Neuro-Psych exam usually takes place over the course of three or four days, two to three hours a day, during which a Neuro-Psychologist performs more tests than you imagined existed. This exam costs money. Often a lot of money. Usually in the range of $4,000 to $5,000. And your insurance company probably won't pay for one dime of it. So first you have the bag of money to pay for the testing.

Assuming you can find the $4,000 to $5,000 to pay for the testing, you now must figure out how to take off several days from work to take your child for the testing, since the testing takes place over three or four days. In order to do that, you have to have either (a) available vacation time or (b) an understanding employer so that you can miss three or four days of work. If you have neither, you may not be able to take your child for the testing without losing your job or at least lose the pay for those days. For many people losing their job or almost a week's pay is not an option. So what does that family do? Well, they usually don't get the testing.

If you were lucky enough to find the $4,000 to $5,000 to pay for the Neuro-Psych eval and could take the time of from work to have the testing done,
you now need to embark on the tours of the various schools which might be "Appropriate" (the "Appropriate" part of the equation needs to be solidified before you even get close to the "Free" part). Usually someone at your child's preschool, or the Neuro-Psychologist will recommend a half dozen or more schools that would be "Appropriate." (Oddly, you will find that the same six to ten schools are deemed "Appropriate" for every child in the preschool, regardless of their obvious, needs or lack thereof. But that is a whole other blog post). You now have to schedule tours of these schools. Most of the tours are held from October to December. They are held in the mornings, usually commencing at 8:45. Now if you do not have a full time nanny to bring your child to his or her regular school on tour days or wait with your child for his or her bus, you need to either (a) hire someone for the morning or (b) beg someone to come to you apartment to watch your child and put the child on the bus so you can run off to the tour. The tours last about two hours, but by the time all is said and done, you can plan on spending a morning on the tour. Which means you again need (a) available vacation days or (b) an understanding employer since you will miss at least six mornings of work from October to December. As with the time off for the Neuro-Psych exam, if you have neither the vacation days or the understanding employer, you may not be able to tour the schools without risking your job or losing the pay for those six half-days.

If you have made it this far (not you the reader, but the parent of the special needs child, although if you have read this far I applaud you), you now have to start to complete the applications and assemble reports from current and former teachers, OTs, PTs, SLPs, Special Instructors, Doctors. This takes time. A lot of time. The applications are not in writable PDF format online, but rather have to be handwritten or typed (try to find a type writer today). Time is not something that every working parent has a lot of. If the working parent does have time after work it is often spent taking the special needs child to after school therapies, or heck just being a parent and spending time with their child. So if the parent cannot take off more time from work to complete and assemble the applications because of the reasons above, the parent ends up filling them out and assembling them in the wee hours of the night.

The next step is having your child interviewed at the schools. These interviews are obviously held in the daytime, bringing up the now age old problem of hoping you either have (a) available vacation days or (b) an understanding employer since you will miss at least six mornings of work from January to March.

By the time you and your child receive an offer from a school, you have had to miss about 15 to 20 days from work and have spent about $5,000 on testing. Not everyone has these luxuries. And the sad reality is that without these "luxuries" your child might not even get close to having the chance to get an "Appropriate" education.

If you get an offer from a school you must put a deposit down to hold the spot while you seek funding. The deposit can range from $5,000 to $15,000 (tuition can range from $45,000 to close to $100,000). Assuming you have the funds for the deposit, you now must hire an attorney. If you are seeking funding for a state funded school, the fees are about $5,000. If you are seeking funding for a school that is not state funded and have to sue the Department of Education, the fees can be higher.

So before you even find out if you are getting state funding for your child's "Appropriate" education, you have to have $15,000 to $30,000 available for evaluation fees, legal fees and deposits.

So why is Mr. Gonzales surprised that there is a disproportionate number of families being awarded funding for private "Appropriate" educations in wealthier areas of the city? Because those parents have the time and the money to go down this path. Instead of blaming those parents who have the wherewithal to pursue private "Appropriate" education, blame the people who set up this system and who thought it was OK to have medicore, or worse, special education services in the public schools. Mr. Gonzales should be appalled at a government that does not provide an "Appropriate" special education in the public school. Maybe his next article will focus on that.


abby said...

Sadly, I am nearly certain that the next installment of his or article like his will explain why it's more appropriate to warehouse our expensive Special Ed. children by hiding them away in a non-inclusive classroom where they learn so-called 'life skills' (at best). Our local school has one that meets in a basement broom closet that lacks windows. How charming. That becomes a nice pathway to warehousing them in very expensive state-run facilities (because tax payers don't want to fund much cheaper adult inclusion and support programs that might afford disabled adults to live at home or in their communities once they turn 21 and many parents of disabled adults were already impoverished by the experience of supporting their kids' through their years of formal education and cannot afford to quit their jobs to stay at home and take care of their adult disabled children or, god forbid, retire).

Anonymous said...


You are a true writer.
I often think about it and feel sad. Being a mom of a special needs kid I do realize how expensive it is to raise a child with special need and I don't have lot of money.
It is hard!!!!!!

Megan said...

It's amazing how you are able to keep your sense of humor through all of this. This is really a sad state of affairs, but Eliza sure is lucky to have you as her mom.

I am crazed often over the red tape we deal with surrounding early intervention and medicaid. And I've said before - I have been quite confused at times with the paperwork and process (and I have a master's degree.) I don't know how in the world the people that REALLY REALLY need the services (we only lower-case really need them) who may actually not have as much education as I do deal with the process.

I hope you get through the process soon (and no worse for the wear)!

SpeasHill said...

Full. Time. Job.

and one that requires a Master's degree, at that.

Some days I think we should scrap the whole system and start over. If only...

Amanda K said...

I often wonder how people can hold a full time job and navigate all the therapy appointments, doctor appointments, educational appointments, etc. I seriously don't know how people keep their jobs. We're only ten months into this preemie life and I'm wondering how I'll ever be able to go back to work. On the flip side, I wonder how we'll afford anything if I don't go back to work.

Anne, Eliza Grace's mom said...

@Amanda: As a single mom by choice I had no choice but to maintain my full time job while caring for Eliza and dealing with all that comes with life with a micropreemie. I think you learn to live with what you have on your plate. Things like "me time." manicures and pedicures or the gym go out the window since those are the hours you have to spend filling out insurance forms or talking with therapists. But at the end of the day, you don't miss those things, so it all works out.