I’ve previously mentioned the struggles my family experienced getting the Saugus Union School District to provide services we feel are in the best interest of our older son, Jacob (who received a diagnosis of autism in 2006). I now have some great news to report: we “won!”
It was by no means easy, or inexpensive, but it was definitely priceless! Here’s the story in its entirety (I apologize for its length, but I hope my family’s experience might inspire and inform other families in a similar situation):
For two years after his third birthday Jacob was enrolled in Special Day Class (SDC) preschool programs to facilitate his development. He had two wonderful teachers — Maritza dela Cruz and Brianna Jones — and Katie Perry, an amazing teacher’s aide.
We were grateful for the services we received and credit those experiences, in conjunction with Applied Behavior Analysis (ABA) services Jacob received from the Center for Autism and Related Disorders (CARD) with a huge improvement in his speech and social awareness. In May 2008 we began looking ahead to Jacob’s fifth birthday (September 10). That’s when things started to get “interesting.”
We had our first Individualized Education Program (IEP) meeting in early May (three more would follow). Much to our dismay the District’s “offer” was an SDC Kindergarten program with some “mainstreaming” (“some” meaning 15 minutes a day — if that).
At first glance this might not seem like a problem. For some parents this is an ideal placement. And, for some kids, it assuredly is. I would never claim our situation is “the” model for everyone nor would I judge another parents choice if it different from ours. Every child on the spectrum is unique. For Jacob, a SDC Kindergarten was simply not the right fit.
Through a combination of “parental instinct” and our interpretation of the Individuals with Disabilities Education Act (IDEA), we felt the best “free appropriate public education” for Jacob was to hold him back one year in a typical pre-school setting with a properly trained aide to facilitate his social development (his main challenge now that his language has improved). We want him to be around peers whose behavior he can emulate and from whom he can learn.
We argued that, despite Jacob being chronologically five, since he was not developmentally a five year old, our request made sense. The District disagreed and stuck to their guns about the “chronological age” issue (at one point they even turned it around on us and used or terminology to support their point of view!). So, we agreed to disagree, but spent most of the summer negotiating with the District to find a place for him in the quasi independent “Fun for Fours” program.
I even paid a visit the director of special education at the District to fully understand our options and to emphasize our desire for Jacob. We spent hours on the phone with District representatives. They listened, but took no action to indicate agreement. It sometimes felt like we were talking with ourselves.
As for the “Fun for Fours” program, we finally identified a campus at which he could enroll and he began in August. Notably, because the district considered him “school age” (and therefore qualified for kindergarten) we had to pay for his program at a cost of $116 per week. Not a huge sum, but in our situation it was a financial challenge.
Over the summer, we signed Jacob up for a summer camp program with typical kids at Creative Years, a wonderful independent pre-school in Santa Clarita. Each day he attended he was accompanied by one of his impressively trained therapists from CARD to ensure he was engaging properly and productively with his peers. Jacob had a wonderful time and, by the end of the summer, had begun to initiate interaction with his classmates. (This fact was a cornerstone to the argument Heather and I continued to make to the District).
In August we also began treating Jacob in accordance with the Neuro Immune Dysfunction Syndromes (NIDS) protocol advocated by Michael J. Goldberg, M.D., F.A.A.P. NIDS are a classification for illnesses or disorders related to problems with the complex interactions between the central nervous system and the immune system. The basis of NIDS is that many of the current diagnoses of autism are not actually autism, but are viral and fungal infections treatable with what might appear to be a strange array of medications for a five year old to take.
The main financial challenge with Dr. Goldberg is that he does not accept Blue Cross insurance — although he seems to accept almost every other insurance — so we are forced to pay for office visits out of pocket (a 20 minute appointment clocks in at $185). We have spent nearly $2,000 on appointments, blood tests and medication. It is yet another treatment we can’t afford, but one we also can’t afford to forego. This seems to be a theme with special needs parents and we are no exception. You do what you have to do for your kids.
Fortunately, through a friend and fellow special needs parent we learned that, due to his diagnosis of autism, Jacob qualifies for Medi-Cal. So we jumped through the hoops and got him signed up. It has already helped mitigate the medication and testing costs associated with Jacob’s care.
However, we are still responsible for the office visits. But, what keeps us positive about this additional cost is that we have seen noticeable improvement in Jacob’s social awareness and interaction since beginning this regimen. Something must be working!
Note that, despite Jacob’s automatic qualification for Medi-Cal, our Regional Center representative never once mentioned it to us — we learned about this from another parent. Are you noticing a trend?
Unfortunately I cannot say the same for the DAN! protocol, which we experimented with for approximately six months starting in the fall of 2007. We spent hundreds of dollars on visits, vitamins and alternative treatments with little scientific measure. Again, however, this was just our experience: I know some parents swear by DAN!
At the same time we began exploring our options with Bonnie Z. Yates, a special education lawyer who has a successful track record with the Saugus Union School District. She was unquestionably qualified, but she was also unfeasibly expensive: her hourly rate is $350 and the initial retainer was $5,000 — renewable in additional $5,000 increments. Ouch!
There was no way we could afford that price tag even though the proper placement for Jacob is priceless. Once again turning to our network of parents with children on the autism spectrum we were referred to Melonie Matjeka, a special education advocate. This was the turning point for us.
We officially engaged Melonie’s services on Jacob’s 5th birthday, basically signing over our $1,200 “stimulus check” to get the wheels moving. Given our situation it was tough to part with this additional income but immediately I sensed we were “professional grade.” To paraphrase a term made popular in the 2008 presidential election: Melonie is a pit bull with lipstick!
Without venturing too deeply into details I never quite understood and, to be honest, exhausted me when I lived through them, Melonie was able to zero in on every single error the District made while also maintaining a total mastery of every nuance of our IEP.
The District continued to stall and evade us, but this time they couldn’t get away with it. I was grateful for Melonie, but felt frustrated for the many families that do not use an advocate and get taken advantage of by school districts. Although I can be cynical, it amazes me how easily and effectively a large organization (public or private) can take advantage of individuals.
Melonie was amazing. I still have no clue what half of what was printed in Jacob’s IEP really means, but I trusted her knowledge and judgment. Melonie’s measured, but meaningful interaction with the District kept the pressure on them, but in a diplomatic and productive way. She was also very reasonable considering what we received for the “investment” in her services. Including her final invoice, her services cost just over $2,000 — but honestly, she was invaluable. None of this could have happened without her intervention.
In late September we had another IEP, but were dismayed to realize that Jacob had not been properly assessed: we had no data with which to gauge his present status and no way to compare that against goals because they had not been properly defined. After wasting our time and money, we set a date in November for another IEP. By this time an array of assessments were to be completed by District representatives to give us a better understanding of Jacob’s ability and potential.
Two months later, when the next IEP rolled around, we were again dumbfounded to discover that many of the assessments were hastily completed (one had literally just been finished minutes before our meeting!). The reports were incomplete and/or inaccurate and did not include the full breadth of information required of such a document (e.g. parent involvement).
Given the lack of reliable data, and the District’s continued insistence that SDC Kindergarten was the right placement for Jacob, we set a date for yet another IEP in late January 2009 (eight months after our initial meeting).
By this point our heads were spinning: how many meetings would it take for the District to A.) get their act together and B.) finally see things our way? To facilitate the likelihood of the second happening, we took two important steps.
First, we had Jacob assessed by UCLA Developmental Pediatrician Dr. Kek-Khee Loo — Dr. Loo’s independent report supported our previously uncorroborated theory about the best placement for Jacob. Second, we asked Dr. Goldberg to outline his thoughts about the best placement scenario for Jacob in a formal letter. As was the case with Dr. Loo, the letter validated our initial assumptions.
Good to know our “parental intuition” was right all along! So now, armed with evidence, on January 23, 2009, we headed back to what we hoped would be our final IEP, unsure what to think but much more confident than we had ever previously been. We were cautiously optimistic.
Having prepared ourselves for another fight — or at least more disappointment — we were shocked when a District representative spent a good portion of the IEP reading from Dr. Loo’s report. Things were suddenly looking up. The tide continued to turn in our direction and, by the end of the IEP, the District pronounced their agreement with the position to which we had steadfastly held onto since May 2008!
Notably, having recognized his current placement was indeed the most appropriate, the District is now covering the cost of the remaining week’s of Jacob’s preschool. This was a great financial relief as, up to that point, we had spent nearly $3,000 for Jacob’s tuition (we will save approximately $2,000 now).
We were both in shock and, to be honest, I wasn’t quite sure when to clap (so to speak) as I was not accustomed to this experience at any of our prior IEPs. Fortunately, the other shoe has yet to drop.
We did compromise with the District on a few details, one of which was that we agreed to let a CARD therapist train a one-on-one aide the District will provide (as opposed to the CARD aide becoming Jacob’s one-on-one aide). CARD will also provide oversight services and ongoing training as needed.
The District contracted with CARD to provide one month’s worth of training services which began on February 2, 2009 and we are now in the midst of that initiative. This was possible, in part, because another student with this arrangement recently transferred into the District, so it set a precedent. Of course, were it not for an active and helpful network of advocate parents in conjunction with Melonie’s impressive acumen, we might have never known about this development.
Additionally, there was a “changing of the guard” within the special education ranks of the District, so that might have facilitated the change of heart. (Special thanks to Joyce Johnston, Director of Special Education and Erica Henson, Program Coordinator).
Lastly, the current budget mess in California might have inadvertently helped our cause. Typically the District fights parents, making sure to beat us into submission through “due process” and other Draconian measures.
However, as was reported to us by another parent (the same one who recommended Melonie), at a recent meeting concerning budget cuts, the District made it clear that, to save money, they were no longer willing to as aggressively fight parents over special education issues. The new approach is to settle and mitigate overall expenses as much as possible.
So, due to some combination of all of the aforementioned issues, we have now gotten what we wanted. Things got moving remarkably quickly too. Since February 2, one of two expertly trained CARD therapists — John and Peter — have attended pre-school with Jacob. Their responsibility is to facilitate his interaction with his classmates while improving how the aides interact with Jacob. They are also tasked with training the District’s chosen aide. John and Peter have a big responsibility, but I trust them completely.
Incidentally, the District aide’s daughter was a student of Heather’s when she taught kindergarten in the District several years ago. Additionally, Jacob’s teacher is the mother of the aide he had while in his second year of the SDC preschool program. Everything is interconnected it seems.
This is a learning and re-learning experience for everyone involved. So far the arrangement has been positive and productive for Jacob — though it has made the teaching staff at his school self-conscious and uncomfortable (CARD is very intense and demanding).
Personally, I think that, while well intentioned, the teaching staff is not accustomed to having so much expected of them (which is exactly why we wanted CARD involved in the first place). We will assess progress at the end of the month and determine our best next steps.
But so far, so good.
Considering the rocky road we took to get here, it is amazing how smooth the journey has now become. Of course, I can never fully relax, especially with additional IEPs on the horizon.
Also, despite my gratitude for the District’s recent decision, I can never forget what they put us through for eight long months. Their antics cost us money we do not have — $5,000 to $7,000 — plus months of heartache and stress.
Still, while this doesn’t absolve all our challenges, it is a huge victory. I also remain grateful to the many individuals who helped us get to this point. In looking back at this entire experience three words come to mind: persistence, patience and parents.
Only by working with and for each other can we give our kids the tools and resources they need to live their best lives. Whatever your beliefs are about the causes and best treatments for autism, we must join together to support those who most need our help.
Love your kids and be loving to each other.