Special Needs and Public School

My son Benjamin who will be 21 in September just finished school ... like ... forever!! HEEELP!!

It is OK. We have wonderful plans for him, which I will talk about options for in another post. I want to talk about his school experience and how public school works with special needs in this post.

Now, there are many students who fall under the label special needs. I am restricting my comments to the special needs that I know and understand a little bit about, which is developmentally disabled students, students with mental health issues, and perhaps a little bit less, physically disabled. My son encompasses a little bit of all three. He has Down syndrome, he has obsessive compulsive disorder, and he also has chronic health issues, though they do not prevent him from being ambulatory.

Now, I homeschooled Benjamin till he was 10, partly because I homeschooled my other chidren (initially because of Ben's health) but also because he spent his first seven years with significant health problems that led to scores of hospitalizations with infectious diseases, and also to scores of surgeries.

At age 10 he presented as pretty healthy and also as utterly bored with homeschooling. I had his three older siblings who were reading Shakespeare, doing algebra, and working on their Latin verbs, and Ben, while the other kids took turns teaching him math, reading, and writing, was bored enough one day to take a red sharpie marker and mark off our entire main floor bathroom (walls, doors, tub, commode, sink, and mirror) with little red tic marks -- thousands of them.  Add to that another day where he tried to see how much dog food he could flush down the commode in one flush -- the next thing he knew, public school was on his daily schedule.

We started him in fourth grade at the local elementary school. 

The school was more or less flabbergasted to get him enrolled. They clearly rolled their eyes at first, wondering why this mom shows up with a kiddo of age 10, and I think they expected he had no skills and that he would have suffered academically from utter neglect. (Perhaps they had experienced kids coming in like that in the past.)

At any rate, we had a series of meetings and established what services Benjamin would benefit from in terms of speech, physical therapy, occupational therapy, hearing impaired services. The teacher was a young enthusiastic woman with a sunny bright smile and a large heart. Ben instantly took to her, and for two years we walked him back and forth to elementary school.

He loved the activities and attention and other kids at school so much that the week after he started school, on a Saturday, we were woken up by the doorbell ringing. Outside stood a 10 year old girl holding Ben's hand. Apparently Ben had gotten up, decided it was time for school, walked over there and nobody had been there. This girl had been out, she knew Ben from class, so she walked him home. -- 

And so we had to have the talk about what it means that "it is Saturday." -- Local school keeps kids like Ben safe because everyone in the neighborhood knows him, and the few times he has been lost, people already knew him and walked him home. 


I won't detail all of Ben's years in school, but I will mention that as he grew into his teen years and became 'less cute' and more suspected as a growing-larger teen boy, while his heart was still with the 6 year olds on the playground, the one singular place outside home where he was unconditionally accepted was in the public schools he attended. Always welcomed enthusiastically by teachers, para-professionals, other students with special needs, as well as by regular students at the school. 

It is thanks to public school teachers who worked hard to connect us parents (via monthly Saturday morning breakfasts and occasional dinners associated with school plays) with other parents that I even after Ben is out of school have a strong parent support network consisting of two different groups that meet monthly. It is thanks to those teachers and that community at school that Ben fostered friendships outside the special needs classroom with students who were his regular lunch buddies in his "circle of friends", students he is still in touch with, students whose parents are still my friends. 

But more than that, public school helped Ben in so many ways. Apart from just helping him learn to read and write (on top of what my daughter achieved in homeschooling), having amazing math programs that Ben just adored (he still works through 1st and 2nd grade mathbooks just for fun in his spare time), in addition to the hearing impaired support, the PT, the OT, the speech therapy that helped us get him an excellent communication device, in addition to all this, school helped Ben

1. work well and hard in projects he was capable of contributing to

• greeting card making
• setting up and taking down dinners for school staff
• landscaping
• paper shredding
• food teams (sandwich making, cookie making -- hygienically!!)
• walking dogs for Humane society

2. School got Ben out in the community on a weekly basis, exposing the community to these students in a positive well regulated way, and helping our special needs students be active and confident in the community

• museums
• zoos 
• bowling
• parks and recreation centers
• grocery shopping
• restaurants
• Christmas shopping for parents and siblings

3. School has helped Ben regulate his emotions when he gets anxious not only by therapy and psychological intervention but by working with me, finding a strategy for de-escalation, and for giving Ben simple coping mechanisms (safe place, coloring activity, etc) that help him get through his day with a minimum of emotional upset, and a maximum of functional hours.

4. School has also accepted Ben in spite of his deficiencies, his flaws, and his -- let's face it -- utter lack of value in a free-market competitive economy. Public school has that attribute that it MUST accept all students, and it has welcomed Ben, worked within the federal law regarding special needs, and done a world of good for my son.

Is it perfect? No! I do have friends who are parents of students with special needs who have not gotten from the schools what they had hoped for their students. I will not discuss their cares here, since they are not mine.

My hope with school for Ben was that he would find a community where he could learn and grow, where he was accepted, and where he would enjoy being.

Same hope I have now for the new adult programs that Ben is going to be in starting June 1st. I want him learning, growing, accepted, and happy. If he can, as I hope he will, hold down some part time (paid or unpaid) employment with group support, that too, I hope is in his future for a few hours per week. (He calls it his new school, and that is the highest compliment Ben can bestow on anything).

In conclusion, I cannot say enough good about all the ways in which Ben was affirmed and loved by super-energetic teachers who personally cared for him and his (sometimes difficult) emotional and academic well being.  And it takes quite a person (or two) to teach those who are not only developmentally and cognitively challenged, but who, as is the case with my son, also has a mental health component that can totally lock him up and have him stuck, impossible to deal with because of his anxiety and inability to move onto the next task. 

School to Ben has not ever been 'a chore', nor was it ever something he wished would go away so he can go into summer vacation. On the contrary, he has always dreaded summer and wished it away so he could get back to school, where he is loved, affirmed, challenged, employed in meaningful activity -- where he is among friends, peers, and professionals who honestly care for him and want to be with him --- unlike, for example, church, which is a mixed bag where some accept him (bless them!!) some avoid him, and some actively can be frustrated with who he is, what he does (or what I let him do) even if they try not to mention it too much. 

Not so with school. In high school Ben  has marched triumphantly through the hallways during breaks or lunch, getting multiple HIGH FIVES or fist bumps from scores of students, most of whom are pleased to give him 5 seconds of their time, students who may not all achieve so highly themselves, but who thanks to integrated high schools have been blessed with the smiley presence of my son Ben daily. 

Our public schools serve ALL students of ALL needs, and I think this is an important point to make. In many cases there is no other place for them. The more severe and specialized the special needs, the less likely that the needs can be met at a private or a charter school. 

During the 2013-14 school year, 6.5 million students—13 percent of the public-school population—received an IEP.

Some things may be able to be run better when they are run by business men or in a business manner with competition in the marketplace, but special needs are not one of them. Special needs COST us, the tax payers, but it is what we do because we care about each other and we care that each and every citizen (rich or poor) finds a meaningful place in our society.

 "(S)pecial-education programs are costly and provide few tangible benefits for school districts. School districts are rewarded for giving high-achieving kids ... Good students raise test scores, increase the ranking of the school, and keep property values high. Special-education students are red marks on the ledger."

https://www.theatlantic.com/education/archive/2017/01/is-the-bar-too-low-for-special-education/514241/

Tango with the Social Security Administration

I have held off on my blog about government services and special needs because it always seemed to me that it could be nothing but a long rant, or a pathetic whine.

Well, I suppose the time has come for this odious task, though I hope to make it at least marginally thoughtful or at least thought provoking.

If you have a child with special needs, and if that child is at any point in his life ill enough to go to the doctor, even the most secluded and isolationist homeschooler will eventually have a run in with government services.

Ben was born at a hospital in Kalamazoo, Michigan. And as soon as he was born I got a visit from social services. I say this appreciatively. Ben was, and is, chronically ill, and he qualified for Children's Special Health Care Services (also known as the Medicaid Waiver), a state service, which can function as either primary or secondary health insurance coverage. For us, we had parental coverage already, so  CSHCS functioned as secondary, which meant that we had no copays and no 20% payments for all those many procedures Ben had in his early years. Thank God!

Michigan, I might add, is an excellent state to live in for support for offspring with special needs, and in many ways I wish we were still there.

What was odd about Michigan was that we had to renew this medicaid waiver once a year. That is reasonable, you might say, since some children, like children with Leukemia and other diseases might outgrow their diagnoses and no longer need to be on the plan. Fair enough, but what it amounted to was that once a year, I had to traipse to a doctor who would document that yes, indeed, Ben still does have Down Syndrome, and then I had to set up a meeting with the person who ran CSHCS, a great lady, Marlene, and she would renew Ben's services very efficiently.

Not so, in 2003 when we moved to Colorado. In Michigan being on CSHCS is a birth right if you are born chronically ill. In Colorado, you were put on a waiting list, and as enough kids died off --yes, I know it is brutal to say so, but such is the case--your child would move up the waiting list for your county and finally get on the medicaid waiver. We spent 3 years in Colorado before Ben was far enough up on the list to be back on the Medicaid waiver (each Medicaid program is run by the state). And once he was, we started all the surgeries that could wait that we had held off on till that time. And it was a lot. He had had surgeries in the meantime, but only the absolutely necessary ones.

Renewal of the medicaid waiver in Colorado is also an annual thing, but unlike Michigan, it is complicated, a long review process requiring multiple bureaucrats to sign off on him, and inevitably every year at some point we are denied, have to appeal, and then finally the insurance is in place for another year. You may think this reasonable, since you do not  want to render government services to the underserving, so a process of checks and evaluations seem OK,  however,  for a parent with an obviously chronically ill  child, this annual hurdle is a pain, which perhaps could be lessened by being done every 3rd year for the most obviously deserving cases. --- I am convinced that we have layers of bureaucrats administrating Mecidaid whose jobs are only to make it more difficult to obtain services.... and the existence of which basically mean that fewer deserving families in Colorado get the services they need. -- So the question is: Are we so eager to make sure that no undeserving families obtain services that we are less concerned that perhaps deserving families (like Ben for 3 years) sometimes go without?

In fact, this post was inspired by my recent tango with the Social Security Administrations, and this is just one of  numerous cute anecdotes I could tell about my run ins with county, state, and federal social services on account of my youngest son having Down's.

Ben's Medicaid is renewed every June 1st, and every April and May I have another incompetent government agency story to tell. This year, I did the renewal interview in April. The normal process is that a lady from a private contracted company comes to my house, interviews me, looks Ben over to make sure he is still alive, and then stays for 2 hours asking all sorts of invasive questions, establishing whether he still has needs that require renewal. (If you add up her drive time, and the time she spends entering all the info, Colorado spends about 6 qualified man hours per year for a kid like Ben, so probably $120 or more per year for her part of the renewal process).

In addition, every 3 years, I go through the absurd inconvenience of proving that Ben does not get any SSI (Supplemental Security Income... basically social security for the disabled whose parents are below the poverty level). Well, you would think I could just produce my 1040 to show them I am not in poverty, or that different government agencies could talk to each other and send over the information, but NO... it is mY JOB to APPLY for SSI for Ben (knowing I will be denied) and then to bring that letter of denial to Medicaid, and without that denial, Ben cannot get his Medicaid Waiver renewed.

(Let me note here that there are so many forms of Medicaid that if you have heard anything bout Medicaid, you may already be confused, but know, just for now that Ben's medicaid is the Medicaid Waiver, which is health insurance for the chronically ill who are under 18, whose parents live above the poverty level).

So this year in May I get a letter from the state asking for the usual SSI denial letter, saying that Ben does not receive SSI. And I call the Social Security Administration, ask for the letter 3 weeks in advance of when I need it. The lady who answered the phone after a 50 minute wait (with a barking dog and a screaming toddler in the background) assures me the letter will be on its way well ahead of the May 28th deadline, so all is HAPPY.

Excepting, the letter did not arrive, and today was  May 27th. So Mamma Bear calls the Social Security Administration back. 1st call after waiting 1 hour: We can fax it to you, what is your fax number. I don't have a fax, but I will call my work, find out theirs and call you back... The person could not wait, so I had to go to the back of the line. Figured out the fax number, and then called back, sat in line for another 50 minutes. -- My new person cannot take a fax number to a fax that I am not sitting next to. I would have to go to the bottom of the line again (another 1 hour wait) AFTER I drive to a location with a fax machine and a phone from which I can call the Social Security Administration again, verify the first fax by faxing back my ID to show it is me there, and then I could get the fax I need to renew Ben's medicaid before June 1st. --- Not gonna happen that day because of Social Security Administration's hours, my needing to get Ben off the school bus, so I could potentially try again tomorrow to drive to where a fax is, call, wait, fax, wait, and finally get the letter and THEN drive to the county office with the letter a day late, and hope that Ben's Medicaid would still get renewed by June 1st.

I don't mean to make this a rant, and I don't want to continue the details of my driving to Boulder in quest of a letter that simply said that Ben does not receive SSI services... SITTING in line at a live place until it was my turn, etc, to procure my letter stating what everyone already knew... Ben gets no SSI... But let me say this...  EVERY YEAR, there is some major obstacle in the way of a perfectly reasonable and deserved renewal for a kid who will neither grow out of his Down Syndrome, nor shed his permanent physical illnesses and disabilities. WHY?

And please do not give me the answer that government is just messed up and only private companies can do this. Other countries can do this, and do it well and efficiently. Half of the process of renewing Ben's Medicaid is run by private companies. The process is messed up seriously for this reason--- In the United States we do not want to ever risk giving something to someone who does not deserve (or earn) it, and so we unnecessarily complicate the process to make absolutely sure that the undeserving is not rewarded. In the process we punish those who need the services... but they are usually so busy taking care of their special needs wards that they do not have the energy to protest and try to improve the system. When they finally get what they need, they breathe a sigh of relief. If they are lucky, they have a 6 month reprieve before the whole renewal system starts over again... that is, a reprieve in which they get monthly insurance claims denied,  hospital mis-billings, doctor's offices sending bills to collection, to say nothing of obnoxious  law clerks from collection firms who intimidate and threaten their credit ratings if they do not just cough up the money themselves immediately,

I used to pile all Ben's bills up till the end of the month and just pick a Tuesday morning when we were not interred in a hospital, and just sit and systematically go through bills from doctor's offices, hospitals, anesthesiologists, surgeons, labs, etc, all these individual billings that were all done wrong and either denied by our job-related insurance or denied by Medicaid for lack of documentation or authorization, etc.

There is nothing more intimidating than a cocky law clerk who has been trained by a collections agency to be as abrasive and threatening and unkind as anyone possibly can be. Collections agencies mercilessly bombard your cell phone, your home phone, and when you finally answer, they make you hold for one of their agents, who immediately is as unfriendly and menacing as he can possibly be, in hopes of intimidating you into paying what is not your responsibility to pay, but you're afraid not to.

Ben's has been sent to collection several times (in spite of the fact that the secondary medicaid insurance should make it impossible)  and it takes a back bone to stand up to the extortion that occurs when collections calls you up with a year old claim from a laboratory that misbilled the claim to start with.

All that to say, WHEN you have a very ill child in the hospital for months on end, Medicaid is supposed to ease that burden by picking up copays and co-insurance, but often all that happens is that it stalls payment till the claims are too old (it will not pay a claim over 12 months from the service date)... and then you are stuck not only caring for your ill child, but on your days home, negotiating medical bills that threaten to ruin your credit.

Do I think the system does not work?? Yes, indeed. Almost all chronically ill or elderly in the United States are covered by Medicaid or Medicare eventually... since health insurance is absurdly tied to your job, once you are long-term sick, when you need it most, you usually lose your coverage. It is, at its root, an absurd system .

At last check, I believe that 45% or more of all medical claims in the United States end up being paid by the United States government. -- The other half is paid by private insurance, which also, in my humble experience is designed not to pay if it can help it, and so the lot of the parent or other caregiver of the individual who is chronically ill is largely to navigate a sea of paperwork to get the two parties who ostensibly should be paying the bills of the ill person to actually do that which they contractually are obligated to do.

Yes, if you are independently wealthy, of course this is not a problem. But most of us are not. And when we have the misfortune of having a chronically ill family member.... a long term situation that will not go away until the person passes away, for many, many people in the United States, the system does not work, or rather it works poorly, it is stressful, and at times it totally fails us at the absolute worst moment --- when we need it the most.

OK, I don't know if this was a rant or a whine, but honestly, this is something I have dealt with for years. Getting Medicaid renewed is an absolute pain in the posterior... getting either insurance to pay is like pulling teeth. Folks, it need not be so. Why can't the United States ever look at what other civilized countries do and perhaps learn a thing or two and give a break to the disabled that inhabit her shores? I understand not wanting to support those who should and can support themselves, but for crying out loud, the elderly, the severely disabled, the dying.... surely we can recognize that they are not free-loafers.