Disability Rants

Health Care Saga Part 13b—1 + 1=0

2012-01-03T18:01:00.000-08:00

Unlike mostteachers this past summer who were not able to work summer school due todamaging budget cuts to our educational system, I worked. I can only thank myup-to-date Special Education credential for the opportunity. I have beeninvoluntarily ousted from the Special Education classroom for the past threeyears at least for reasons that are shocking and bewildering to most everyonewho hears my story. I was ecstatic to secure a position as a Special Educationteacher not only for the income boost but also just to experience that “homeagain” feeling teaching my Special Education students brought. When thiscockamamie health care whirlwind subsides, perhaps I will elaborate more onthat. For now, I want to continue with my legal foray into resolving the issuesthat have been so pressing for the past four years.

I took the opportunityto do more research into disability rights legal representation as things werewinding down with the regular school year and in the educational pause betweenthat and the start of the summer session. Thanks to the internet, I researchedand found five or six firms or organizations who professed to be successful infighting disability rights. There was one firm in particular which caught myattention. They had offices here and in a city just north of us and seemed tomake good business fighting such causes. My only concern there was that theylooked like they specialized in class actions. While I believe my situation tobe a common phenomenon among people with disabilities, I had no idea what ittook to organize a class action and dubious that we could get the necessarynumbers together as I don’t really hear anybody talking about this kind ofsituation except me—though I know it happens. In any event, I had nothing tolose. Tired of phone calling, I emailed the contacts I had, gave them asynopsis of what I was looking for and waited. The firm I was hoping for andtried to follow up with, never responded to my inquiry.

My husbandwill tell you I am loathe to writing anything down. I instead like to think Ican rely on my memory which in the past I could. I have an uncanny memory fornumbers, names and idiosyncratic moments of life. Most of it doesn’t mean muchto most people and oftentimes I don’t deliberately try to commit these odds andends to memory, I just remember them. I don’t like to admit this but I think myability to “memorize” things is slowly becoming a thing of the past. As I get busier and pulled in the differentdirections of work, family, marriage, friends and my various “causes”, I knowI’m forgetting stuff—but I try to pretend I don’t. I find it both a blessingand a bane to remember stuff but I’mproud of it because one of my favorite things to do as a kid in a doctor’swaiting room was to listen to my mother tell me a story from her childhood orfamily history and I wanted to be able to do that too. For this reason, thissense of “pride” I never wrote down who was the newest batch of lawyers I hadcontacted. Instead, I relied on my memory to remember who they were. And Ithought I did a pretty good job.

I started my summer school sessiondelighted to be back in my element. The position was only half time which wasjust enough to whet my appetite for these students without draining me entirelyso that I could still enjoy my summer. One day, I had a pause in the hurlyburly of class and noticed I had a message on my cell phone. It was from the Disability Rights Legal Center.To be honest I didn’t know how to react. I didn’t actually remember callingthem. Added to that, didn’t remember what I called them about. In this time, Ihad vaguely thought about bringing another disability related lawsuit regardinga sub-par evaluation I received in a position I never asked for, sought anddeliberately stayed away from in part knowing it would highlight my disabilityand not my strengths. As it turned out, I had some time to search my memorysince when I called back; I ended up leaving a message and starting a familiarround of telephone tag.

When I finally got hold of someone,they explained who they were and after a brief exchange I decided I had calledthem about my teeth though I did let them know I had another issue I’d wantedthem to consider when this was done. They let me know they were a legalreferral service and advocacy agency run through the Loyola Law Schooland the intake line was commandeered by law students. They took down thedetails of my teeth saga. As always they marveled that it hadn’t resolved yet.The intake person said they would give their notes to one of the staff lawyersand get back to me on what they could do for me. I had heard such thingsbefore. I was frank with her about my skepticism by asking two things directly:did I have a case? How long should I wait to get a response from them? I qualifiedthe abruptness of these questions reminding them that while they just joinedthis saga, I had been doing this for too long and had little patience to bestrung along for very long with no hope from them. She soothingly said sheunderstood and promised to get back to me in two weeks. I believed her.

Impressively, she called me backsoon after—only to get my voicemail. We went on a short round of telephone tag.Thankfully, because I was only working part time, I had more opportunity to geton the phone—and I was relentless about it. I finally got to her and she said thatwhile she still planned to present my case, she had gone straight to the canceradvocates at the DRLC and asked for their advice on the notion that insurancedifficulties were all the same whether a person had cancer or a troublesome wisdomtooth. Apparently they suggested I talk to two state offices: the insurancecommission and another office I didn’t catch the name of. I called up theinsurance commission right away and told them my issues. As soon as they heardthe words “HMO” they told me this wasn’t an issue they could help me with. Ihad to go to the Department of Managed Health Care. I told them I had alreadyinitially dealt with them and the out come was less than helpful. Didn’tmatter—mine was a matter for the DMHC. A little annoyed, I called the secondnumber. Turns out, it was the DMHC! I didn’t even bother to wait on hold totalk to someone, I hung up. I decided to wait for the DRLC to come up withsomething else.

As promised, a couple weeks later,the DRLC called without my reminding them. I tell you, I have begun to acquirea new appreciation for follow up. She inquired if I had followed up myself oneither of the numbers she had given me and what they had said. I gave her thebriefing that one office refused to assist me and the other was an office I hadalready dealt with to my dissatisfaction and was dubious they would be anybetter help if I asked them again. She accepted that saying they would enterinto a Brief Service agreement with me. I had only to sign the agreement andthen they would get on the phone and (to my mind) raise hell for me. I was sograteful and a little stunned really that things finally seemed to be going myway. We hung up and I waited for the paperwork to come in the mail.

The agreement wasn’t anythingspecial. The only thing that caught my eye was that they were only representingme in order to get this issue resolved. They specifically stated they would notseek a monetary sum for damages or any other compensation. Like I’ve statedbefore, I am not a litigious person. While I believe I have a strong case toseek damages based on the longevity and ensuing events surrounding the basicissue, I try to keep my eye on the very basic end result that really has nomonetary value: the sense of relief in getting the issue resolved. Reviewingthe paperwork, my husband’s eye went to the permission I gave them in signingto use my case in promoting the work the DRLC does. He wondered if they wouldpublicize my case any and what that opportunities that could bring to me. That was only a fleeting wonderment as Isigned and promptly sent back the paperwork.

I actually did not hear back fromthem again for a good while. I did try to call the only number I had to receivean update only to get their intake line answering service. They finally caughtup with me (or I with them) and I spoke directly to the clerk assigned to mycase. He was just checking in and wanted to have a few questions answeredbefore outlining his plan. After a brief exchange in which he really onlywanted to double check background details, he told me told me he had lookedinto applicable laws and was confident I had a legal precedent for this issue.He furthermore pointed out that both Kaiser and Western Dental were good,strong stand alone insurance companies. But, as he said, put them together andyou have nothing because they don’t work together. He ended the conversation bysaying he was writing up a letter to send to both entities. The letter from theDRLC on my behalf would essentially outline their position and requestaccommodation for this procedure to get done. I was relieved after we hung upbecause I thought surely Kaiser and Western Dental could not ignore this from alegal standpoint. The more I thought about my situation and the things he hadsaid from his fresh perspective, I wryly concluded that this was one of thosesituations where math is not always absolute and 1+1 CAN =0.

Health Care Saga Part 12b—Welcome to Medical Purgatory: the Sequel

2011-12-30T18:12:00.000-08:00

After afitful night’s sleep in which I roused briefly in pain whenever I turned over,I arose to a daylight that might as wellhave been shining a burning light on my painful jaw. Mechanically, I went tomake myself a soft breakfast—no bagel and cream cheese for me this morning. AsI sat down to slowly eat my scrambled eggs and sip my tea, the phone rang. Itwas the elusive employee of my doctor’s office who I had emailed the nightbefore. I was so relieved to hear from him. I gave him a briefing of what hadbeen happening the last few days and explained I wanted to come in to see Dr.Felsenfeld TODAY. I would wait as long as I had to in the waiting room. As Isaid that I mentally reminded myself that the longest I had waited for a doctorwas six hours—a few hours of which was standing room only. I wondered to myselfwryly if I would beat that record today.

For amoment his concerns were more basic: When was the last time I had seen Dr.Felsenfeld? Did I have current dental x-rays? Had I cleared the visit with mydental insurance? I assured him that though I hadn’t seen the doctor in a goodwhile, the office did have a file on me. I further told him that I had spokento Western Dental and they had reassured me that they would fax over to them ablanket authorization to cover everything that needed to be done—includingx-rays. He then checked the office fax machine and there it was—theauthorization as promised. He then gave me this bit of news: Dr. Felsenfeld wasout of town and wouldn’t be back for a week. Oh my god! I thought, does thisever end?! He offered to contact him by email and consult him as to how best toproceed. I told him that much as I wanted to see my own doctor, there was noway I was going to wait for him to come back. As I said that, I thought,there’s also no way I’m going to see a Western Dental doctor or the emergencyroom either. No, I said to myself, the only doctors I trusted at that pointwere my doctor’s colleagues at UCLA. I told him that and he agreed to look tosee what could be arranged. The only appointment available was a 4:00pm appointment that day with one of theregular dentists at UCLA—likely the very last one that was only availablebecause I insisted on being squeezed in. I took it without hesitation. Ithanked him for his help and hung up. I then promptly called my mom andinformed her of what was happening. I quickly packed a bag and corralled my catinto her carrier. With my cat in the backseat and our necessities in the trunk,I set off to my parent’s house finally feeling like I was moving forward onthis issue and the period of inertia was over.

After arriving at my parents, Iunloaded my belongings and freed my cat and flopped into bed. Now that I washome with my parents and had a plan, I didn’t feel like I had to be superhumananymore. I could relax and let my mom and doctor take care of things—twofigures in my life I had grown to trust over the years. I buried myself underthe covers against a growing February cold front and dozed off—my cat purringbeside me.

Later that afternoon, theappointment went without a hitch. I saw the doctor and of course he identifiedthe infection as soon as he looked into my barely opened mouth. He was verynice if a little hurried in his treatment. I understood that I had elbowed my way into the office so I chose tooverlook the undertones of his demeanor. He set me up on IV antibiotics whichhe said would have been standard procedure had I gone to the emergency room. Ashe did that, he arranged for a prescription for oral antibiotics and Vicodinfor the pain. I was never so happy to be prescribed pain medication as I wasthen.

Once that was in place, heproceeded to squeeze the IV bag so that it would drip faster—so I would go homesooner and he’d get off work faster. As he did this, he asked me for a run downof the “saga of the wisdom teeth”, which I gave him by rote. He then told methat Dr. Felsenfeld was actually in the office. He just wasn’t seeing patientsofficially until next week. His plan was this: I was to return the next morningfor a “check up” with him. He would then call over Dr. Felsenfeld for a“consult” with “his” patient. From there they would write up the diagnosis andrecommended remedy—extraction of wisdom teeth by general anesthesia taccommodate my facial issues and present that to my insurance as a preventativemeasure to keep anther infection from happening again. That sounded great to meso I agreed to return. As I left the office, I noticed my “new” doctor wasleaving right on my heels as well. I filled my prescription of Vicodin at alocal pharmacy and fell into a blissful, drug induced sleep that night.

The next day as arranged, I showedup for my appointment. He almost immediately called over Dr. Felsenfeld. Was Iever glad to see him! For the umpteenth time we went over the vicissitudes ofmy insurance situation. He postulated that we may have a stronger leg withwhich we could kick my insurance company into gear using this tooth infection. I was all for whatever worked. Hecomplimented me on my tenacity with this long enduring situation and hepromised to submit paperwork to the office’s insurance handler so we could getthings in gear. My “other” doctor then asked me how I was doing specificallywith the infection and meds. Aside from still being in some pain the swellingwas already going down and I was getting groggier every time I popped anotherVicodin.

At home I called up my husband toapprise him of the situation. He informed me that he was already planning oncoming home for the weekend. I was gladto see him so I waited at home as I reveled in the lessening pain in my jaw. AsI slid deeper into the torpor induced by the Vicodin I noticed with heavysurprise that it was snowing outside! I amused myself watching my cat blithelywalking outside as snowflakes collected on her fur and whiskers. The only thingof consequence that I managed to do was call up my work and relayed a messagefor my time keeper that I was likely not coming to work on Monday. I could dolittle else.

My husband’s homecoming thoughbrief, coupled with the comfort of being in my mom’s care lifted my spiritsconsiderably and I was making what I thought was a speedy recovery. After myhusband returned to work early Monday morning I opted to not return to work yetand spend another day with my Vicodin. Unfortunately, in my foggy state I mustnot have communicated that fact sufficiently to my work place. Later thatmorning they called me up wondering frantically where I was. It took a lot ofeffort but I apologized for the confusion but reiterated that there was no wayI could come in that day. I told them I would call later to update them on mycondition. I fell back into a sluggish sleep. As the day wore on, I resumednormal activities feeling stronger and less dependent on the medicine. I calledup my doctor, braving the labyrinth of their telephone system to get updates onmy case. I left several messages and played a recurring game of telephone tagthroughout the day. Who did I forget to call in the flurry of phone calls? Work.Oblivious to that, my mom and I made plans where she would drive me to and fromwork in case sometime during the day, the pain returned and I had to take aVicodin.

The next day, bright and early,much to my timekeeper’s surprise, I showed up for work. Apparently this timethey didn’t expect me and had already made arrangements for a substitute. Aftera brief exchange in which I defended myself as not responsible for what I mayor may not have communicated during the past few hazy days I told her I wouldleave but not before I set up my room for the substitute. As I hurriedly triedto gather up on the spot lesson plans, she called my room and did an about facetelling me that she had cancelled the substitute and I was “allowed” to stay. Iwent though the day as best I could while being minimally prepared for studentsunsettled by my absence. At any chance I got during the day, I called my doctorhopeful that they could give me good news. I was playing what I felt wasinterminable game of telephone tag. It was only at the end of the day that Ifinally got to speak to someone with an answer. Despite the fact that thehospital tried to compromise and offer Kaiser a “discount” on the single dayhospitalization--$6000 as opposed to $9000—they rejected the claim and we wereright back at square one.

Fed up with trying to play by theirrules, I started to think about taking another tactic—legal action.

Health Care Saga Part 13—1 + 1=0

2011-12-26T15:22:00.000-08:00

I fully admit I am not amathematician by any stretch of the imagination. But the title of this installment is not anerror. I know following this blog and my one woman crusade against the healthcare establishment has been a long and arduous journey. I appreciate those ofyou who have persevered in standing by me in virtual reality as well as in mypersonal life. If you stick with me a little bit longer, I will tell you how Icame about this idea that 1+1=0 and what that means to me in this saga.

I am not a litigious person. I amactually very disdainful and even ashamed of people who are quick to call alawyer or who file petty lawsuits at the blink of an eye. Once when travelingwith my mom to see our relatives in Italy,we got stuck at an airport due to some mechanical fault with the aircraftcarrier. Several times, the airline announced we would board but then, upon asecond check realized that the problem still was not resolved. It became quitelate as we waited for a resolution and admittedly many of us were feeling alittle punchy from lack of sleep. I was willing to wait as I probably had anover developed sense of patience from years of sitting in the waiting rooms ofmedical offices. Things got interesting when a very vocal American who was to boardthe flight with us began demanding if there was a lawyer among us. It wasalmost like a bad political cartoon. My mom of course gravitated towards theItalians who were on the same flight. Being young, I stuck close by. TheItalian reaction was very different. As they smoked their cigarettes, theydiscussed the overactive passenger and the futility and even folly of herdemands. Was this really the way to geton a plane? Did she really want to force the airlines hand? They could rush totry and mollify us by prematurely getting us on the plane with results I don’twant to think about. Eventually the airline summoned a new plane to replace theone we should have been on and we got Italywithout further incident.

The point to this story is that Ididn’t want to be that woman. I wanted to be sure I wasn’t overlooking anobvious solution to this problem that didn’t involve a lawyer. I hated to thinkthat just as I gave up and found a lawyer, somehow things would fall into placeand my dental issues would be resolved. Then I realized two things: this hadbeen going on for four years and I had run out of other ideas. I was prettysure I should not feel bad for wanting to seek legal representation. What alsoturned my decision was that I knew my husband agreed with this view. He wasready to get a lawyer long before my infection came about. He even told me soon many occasions but he respected that I had to come to the decision myself.

As a teacher I lead a busy and veryinsular life in many ways. I don’t meet a lot of people outside of work. Byaccident more than by design most of my friends are either teachers or socialworkers. I know very few lawyers personally. The ideal at this point would havebeen to bank on my personal friendship with one or another of the smattering oflawyers I knew and get legal representation (or at least advice) for free. Iquickly deflated when I realized none of my lawyer friends had experience inthis field of law and while concerned for me, they respected our friendship toomuch to give me less than the best legal advice to be had.

Nevertheless, I contacted a lawyerwho was a friend from my days as an undergraduate. As with most collegefriendships as the years went on and we pursued our different lives, we hadbeen seeing less and less of each other. In fact I actually hadn’t physicallyseen her since my wedding four years ago. Thanks to the internet though andother marvels of modern technology, we still kept each other apprised ofimportant events in both our lives. She was keeping informed of this particularsaga thanks to this blog. I knew we were still friends to the extent that Icould ask for her help and advice. As predicted, she did feel I have a case butshe knew her background in law wasn’t what was needed. What I was counting onfrom her was guidance on finding someone who could help me. As I knew shewould, after doing a little networking through whatever channels she has at herdisposal, she came through with some names. I finally had a starting point.

I contacted all of them. Myhusband, relieved that I finally agreed to handle the issue through legalchannels did his own research as well. You would think that things would startto pick up from here. However, a few of the firms I called either did notreturn my phone calls, or the individual no longer worked at the firm. I didtalk to a couple of office people. One after explaining my situation saidplainly that they didn’t practice the kind of law I needed. I had more contactwith a legal secretary of a firm that both my husband and my lawyer friend hadcoincidentally both found and was reputed to be very successful in dealing withHMO’s. I figured surely he would want to take the case. The legal secretaryasked for a chronological recounting of all my dealings with my insurancecompany. I was never so glad to have this blog. Since I wanted to add a fewnames here and there and omit details/comments she didn’t need to know, Iwaited until I was on Spring Break which was a couple weeks away at this pointto give my full attention to this task.

Once the time came, between thisblog and the other details of time, place and names that I had omitted from thepublic to protect the guilty, I gave her a 3-4 page synopsis of my saga. Prettyneat trick right? I emailed it to her and waited. After a week or so, I calledher to receive an update. She said the partners hadn’t gotten back to her aboutthis but she would let me know as soon as she had some news. I have heard thissong and dance many times before and make it a policy by now NOT to wait as Iam told. But, I didn’t want to be a thorn in her side either so I waitedanother week. I called her again. Again, she told me they hadn’t gotten back toher. The next week, I decided to email her as well. Both in email form and overthe phone, I was instructed to wait. After that, I limited myself to hittingthe forward button on my original email on a weekly basis. After a few weeks ofthat with no results, I quit and contemplated my next move.

My decisiveness in this saga hasbeen admittedly slow paced. I know that. I won’t completely hide behind theinevitable excuses of work, family and other life issues as I legitimatelycould. Whatever my reasons, I tabled the cause and chewed on my options until Ihad another “break” in my daily life events. Translated from teacher speak: Iwaited until the summertime. Early in the summer, I had relatives visit fromthe east coast. As we enjoyed the warm summer weather outside alongside myparent’s pool, the subject of my teeth came into the conversation. I told themhow frustrated I was over the fact that no lawyers up to now wanted to take acase that for all intents and purposes was a legitimate one. Their opinion waswhat I was suspecting all along—legitimate the case may be but how much moneycould they really earn making a lot of sound and fury over a few small teeth?That sounded like a true enough reason to me. But what could I do with thatknowledge? That’s what was stumping me. Now at this point, I could go onstereotypical tirade of how lawyers are just money hungry capitalists lookingnot at the cause but on what will give them the fattest paycheck—but I won’t dothat. The reality in this economy is the majority of the lawyers I knowpersonally have either lost their job at one time or another or are afraid oflosing their job because there is not enough business profit being brought intothe firm. Like any other profession, the “lawyer business” is trying to stayabove water as well. My relatives did offer a suggestion. Perhaps I needed tolook my case differently. Up to now I have been presenting it as an insurance violation.Maybe if I came at it from the perspective of a disability rights violation, Iwould have better luck. I thought thatwas a fine idea. After they left, I began another round of research to find alawyer practicing disability rights issues.

Health Care Saga Part 12--Welcome to Medical Purgatory

2011-11-11T11:48:00.000-08:00

After some four years of circuitous insurance dealings over the fate of rotting wisdom teeth, the foreseeable happened—I got a blindingly painful tooth infection. I should have seen it coming. Over time many people had asked “Don’t your teeth hurt?” or some variation of that question to indicate that things could get a lot worse. I was used to living with medical conditions that were at best a little uncomfortable on a daily basis. I’m lucky because those other conditions, like my wisdom teeth could have been in a lot worse shape. In any case, I never gave that question more than passing consideration.

One weekend day, I found my face and neck to be unilaterally swollen and tender. From my perspective it wasn’t that bad aesthetically. My face had been swollen a lot more when I had reconstructive surgery several years earlier. But the pain as the day wore on went from mild to unbelievable. I survived the weekend keeping to myself and doing very little. But still, true to my stubborn, life must go on nature, Monday I went to work, lectured my students, ate my lunch (albeit slowly and carefully) and came home and had dinner. My husband was working on a job out of town at the time and wouldn’t be back for a month. I wasn’t planning on making a big deal out of the situation to him and over the weekend it wasn’t, but it had been a difficult couple of days. Going to work only made me feel worse.

He calls me every night when he’s away. I knew he’d worry about me if I told him I was in pain. I didn’t want to say anything because what could he do about it from where he was? I didn’t want him to think he should come home over some teeth—and I wouldn’t have let him anyway. But it had been a long day in more ways than just having to do with my teeth. When he called, after the normal exchanges in pleasantries I fell silent. My husband knows when I get quiet like that it’s not a good sign. He also knows pushing me to talk doesn’t do any good—I just keep more quiet. So he waited. On my end I was quiet because I was trying not to cry and thus alarm him. That lasted about a minute. I burst into tears finally being able to tell him how badly I felt emotionally and physically. We talked about my worry over what was causing the pain. I knew I had a tooth infection but never having had one in the past I wasn’t sure how to proceed. Other times I had been sick, I could wait a few days for an appointment.

The only time I had pushed for an appointment was when my shunt had broken years before and I saw my neurologist. It may sound strange to most people but I wondered if “regular” doctors (like a dentist) took emergency appointments. You may be wondering why I didn’t go to the emergency room. Having had that experience before when my shunt broke—I wouldn’t go. To quote Helen Hunt in “As Good As It Gets” I got “whatever nine year old they just made a doctor” The last time I went to the emergency room they totally misdiagnosed me and overlooked obvious shunt malfunction and sent me home. That resulted in my loosing my eyesight temporarily. It was only after losing my eyesight that I pushed to see my neurologist. So, in a nutshell I didn’t go to the emergency room because they didn’t know what to do with someone with my medical concerns.

Back to the matter at hand, my husband wanted me to at least take a few days off work to rest and do the necessary squabbling in order to have this taken care of in a way that was comfortable for me. Through the excruciating pain I had one thought—my students. I didn’t want to leave my students to just any substitute—I knew they would tear him and my room apart. My husband tried to persuade me to look the other way—my condition was more important. But I wouldn’t do it until I was sure the right substitute could be gotten. My husband knew I wouldn’t change my mind. He didn’t agree but he dropped it.

The next day, I went to work in really bad pain from the start. Believe me; being with my students did not help. Between the usual teacher directions and corrections, my mouth was so painful and sore by the end of the day I actually felt stiff. Still, as soon as the last bell rang, instead of heading towards my lesson plans, I picked up my cell phone. I called up Western Dental member services and gave them a blunt rundown of the turn of events. I called up Kaiser too and gave them grief because had this been settled long ago as it should have, this would not have happened. They were concerned but inactive. I went back to Western Dental and demanded to see my specialist, I wouldn’t see anyone else. They quickly agreed to send an authorization to his office.

I am forever cognizant of how busy my doctor is. Also, I was skeptical that the authorization Western Dental faxed over delineated the urgency of the visit. My understanding was that it was a blanket authorization to see the doctor and have whatever needed done, done. Not trusting Western Dental anymore, I made sure they spelled that out for me. I didn't think I could see my doctor that same day. The distance alone prevented me from getting to his office before the close of business. But I was determined to see him the next day. So I luckily was able to make arrangements for a substitute I knew to be good. Anticipating the time it would take for me to heal; I wrote admittedly sketchy lesson plans for two days. I went home to think about my next step.

It was agonizing for me to think about my doctor's insurmountable telephone system in my state. But I had to see him without delay so I had to communicate with someone. I remembered early on in this saga I had communicated with someone in his office by email. Whether he was an office assistant, physician's assistant or what have you, I still to this day do not know. But I knew I had his email. So I wrote to him directly explaining the current state of events and implored him to let me see my specialist the next day without delay. At that point, it was all I could do. In a way, it made me feel stronger just doing that. When my husband called, I told him what I had done and what I intended to do. He was relieved that I had given up on going to work and of course asked to be updated on whatever happened next.

I then called my parents. Like with my husband I hadn’t wanted them to worry over me and my medical issues. In a strange way I would have felt guilty that my medical issues caused them this worry. In the last few days I hadn’t told them anything though being nearby they would have readily helped in any way they could have. I called them because I wasn’t sure of the outcome of the doctor visit—whenever that happened. The last time I had an emergency visit I went straight to the hospital. With my husband out of town I knew if that happened I needed someone to drive me at least. More importantly I needed someone to be with me should I go straight to the hospital—for no other reason than moral support. I am a staunch believer in that no one should be left alone in the hospital ever—not for a tonsillectomy or a heart transplant. Growing up I had the “luxury” of having my mom stay with me in the hospital almost round the clock with regular visits from my large family. I firmly believe that had a lot to do with my speedy and successful recoveries. Some people would say I was just lucky my family was in a position to do that—and I was. I still believe that in practice, keeping any hospital patient company should be so common it should be expected—almost taken for granted.

But I digress again. I updated my mom on what was going on. I told them that I would have more details hopefully the next day if the office returned my email. I wanted to drive out to my parents so my mom could drive me to the doctor—they lived much closer to him than I. I also anticipated that I would need a few days recovery whatever the doctors did so I told them I would bring my things to visit for a few days—including my cat. Of course they agreed.

I hate the feeling of being “neither here nor there”—of being stagnant if you will. Having been brought up as a Catholic this is what I would term “Purgatory”. That’s what this situation has been feeling like—a medical version of Purgatory. But, in a weird way, this tooth infection made me feel mobile. Something was going to be done about my teeth. I knew it was just to resolve the issue of the infection but I was hopeful it would mobilize the powers that be to act on the root cause (pun intended) of the situation—wisdom teeth that needed to come out. I went to bed that night feeling better than I had in the past few days--despite the throbbing pain in my jaw.

Health Care Saga Part 11--Oh to be DONE with this Mess!

2011-04-23T17:10:00.000-07:00

I held off so long on posting this. I really, REALLY wanted to post a final, triumphant end note to the bureaucratic mess the “United” States of America calls a health care system--this is such a divisive issue for the country to my mind. But I have to face facts. It’s not over. Once hopeful I could see the end zone, I’m now skeptical it will be settled by Christmas. That would be a Christmas miracle. My frustrations and ennui aside, let me catch you up.

After the holidays, I called on Western Dental Corporate and had them resurrect my old authorization. My sister was right, since it had never been acted on, it was still valid. That worry aside, I concentrated on Kaiser and setting up the surgery with Dr. Felsenfeld. That’s when another unwelcome road block appeared. I had always known my doctor to be a very busy man. I looked at it as a testament to his expertise. That’s one thing that made me want to work with him—the fact that he could be so busy and successful and yet still is a pleasant person. His office informed Kaiser this: his busy schedule prevented him from traveling to other hospitals to perform surgery. Besides, there was also the fact that his liability insurance did not cover him on procedures performed at other hospitals. So, Kaiser came up with Plan B, which I must say was a fine solution me.

Kaiser proposed this: they would arrange for the surgery to be done at Kaiser by a doctor who was contracted by both UCLA and Kaiser. Now, I’m new to Kaiser and I really don’t know much about the repute of their individual doctors. Despite liking the efficiency of their record keeping and that all my records were essentially available to all my doctors under the Kaiser umbrella—saving me the dreaded “broken record” repetition I was accustomed to as part of having a multi-faceted disability, I was still skeptical. In the back of my mind I still viewed HMO’s as “assembly line, one-size-fits-all” medicine. Therefore, I figured their doctors would of the same mindset—at least for the purposes of keeping their job. However, the one saving grace with this proposal was the doctor that was suggested was also a doctor at UCLA. I knew UCLA to be a very reputable institution and figured they would be less likely to hold on to lemon doctors. I decided if I needed added reassurance, I could always ask Dr. Felsenfeld for his recommendation of this doctor.

My husband once observed about this whole journey that for “every step forward, take two steps back”. That’s a very astute observation. I would agree that it was a good characterization of events. I was confident it was a thing of the past. From now on, it would be smooth sailing. I gave the Kaiser representative the go ahead to make arrangements. She said she would get to it right away. Not long after, she called me back with news. What she said specifically escapes me by now. But she might as well have said, “Take two steps back.” In the time I had been dealing with Kaiser, it never really occurred to me to check that everything was still agreeable with Western Dental. After all, they issued an authorization for their part of the procedure. What’s more, I had been getting regular cleanings during this time. I know the people in my branch office were aware of what was going on because whenever I went in there they inquired about the status of my situation and marveled that it hadn’t been resolved. What they didn’t tell me, and the Kaiser representative told me now over the phone, was that in this time, Western Dental had added to their services. They now covered anesthesia. In addition, when the authorization had first been issued, it was assumed that the procedure would be done by Dr. Felsenfeld, at UCLA. They did not work with Kaiser, nor would they honor any part of the authorization if it was fulfilled under a Kaiser roof.

In a fit of frustration—I think I was crying in anger by now—I decided I had to hear it for myself. To be so close and then have the rug pulled out from under me again was infuriating. I called up Western Dental member services and demanded an explanation from someone. At first I got brushed off and was simply told to go ahead with my plans as they were, bill Western Dental after the fact, and they would reimburse the hospital. I desperately wanted this to be true so I could put an end to this. I went back to the Kaiser representative intending to tell her this. Working for an HMO she knew how these things worked. She urged me to call them back and double check. I did so the next day. I spoke to someone else who said essentially that that was not true. When I asked why I was told differently the day before, she could not answer me. In any case, I tried to clarify; Western Dental would pay for the whole thing—including hospitalization. She told me to submit my request and Western Dental would take care of it. When I pressed the issue of hospitalization—by this time I was looking at my Evidence of Coverage papers as I talked to her and not seeing any indication that they would cover it—she said they would take care of things. She said they had already authorized the tooth extraction at UCLA so adding on more would not be a complicated issue, as long as it was done at UCLA. I did not know what to believe but decided to give the go ahead to submit the authorization request and see what came about. I told the Kaiser representative that I thought it was resolved and despite the circuitous nature of the events, it looked like I would get what I originally planned.

Before I could hear back from Western Dental, another stumbling block not related to insurance issues occurred. I got a monstrously painful tooth infection. In my next installment I will talk about how I handled this completely preventable turn of events—and how infuriated I’ve become with the health insurance establishment.

Health care Saga Part 10 The End is Near! Can You See it?

2011-01-02T15:11:00.000-08:00

I haven’t been this happy to be told I was having surgery since I was 24 years old—that was over ten years ago. At the time I was very ill as a result of one of my many other medical conditions. Had I known about blogging back then, I could have gone on about the dangers of someone with my medical history dealing with surprisingly uneducated doctors who also refuse to acknowledge their ignorance. But I digress.

Getting back to the subject, early last week I was checking my messages on a break from work. My cell phone registered two or three messages from a name I didn’t recognize at the DMHC. He said he had some information regarding my case. I called back only to get his voice mail on his lunch break. I was very curious and did not want to play telephone tag with this person. I left a message asking him to call me back at a very specific time when I knew I could take his call.

Surprisingly, I had some time before the specified hour. I could have waited for him to call me back but I was too curious. I called and this time he answered. At first he was a taken aback because he quickly tried to clarify that I had left a message saying to call back at a specified hour. Then, he tried to assure me that he would have. I was very calm about his fluster and simply said “I unexpectedly had the time, so why wait?” Satisfied with his customer service duty, he proceeded to tell me that after all evidence was looked at, the final decision was to overturn Kaiser’s initial decision and require them to pay for the hospital stay and anesthesia. I would receive the details of the decision within the next few days. I was also to receive a phone call within the next 5 business days from the Kaiser Corporation to talk about scheduling and details, etc. He also emphasized that if I did not receive the phone call within those 5 days, the paperwork I would receive had a name and contact number I could call immediately at the DMHC to report the breach of protocol. I was relieved to hear that as at this point, I didn’t trust Kaiser to cooperate with much. I had so many questions, but at the top of the list, I had to ask: “Will I be able to have the surgery done by my chosen doctor?” He couldn’t tell me the answer to that. He explained that the DHMC looks at services to be provided. It was not their business to determine who would provide that service—that was between me and Kaiser. That made me a little nervous but I had to be satisfied with what I had achieved. I finally bit my tongue and thanked him profusely for the news.

I was so excited, I immediately made two more phone calls to the two people I knew would appreciate it the most—my husband and my parents. My husband was taken aback by the news. He hadn’t expected it to come so it took a bit to have the meaning of my news sink in. But in the end he was happy for me. I called my parents and spoke to my dad. Now my dad has his own medical issues due to age that take up most of his energy. He has been intermittently vociferous in his support of me and my insurance saga. Understandably this has coincided with how he has been feeling on a day to day basis with his own health. Anyway, I told him the news and he was promptly congratulated me and expressed his relief. I asked him to have mom call me later so I could talk about the details. That evening, I spoke with my mom and essentially she had all the same questions I did. When would it happen? Where would the surgery take place? Who would perform the surgery? Obviously, she was still skeptical that it would happen since I didn’t have all the details—so was I really. I explained to her that I didn’t know but the DMHC said they took care of everything and once the paperwork came, I would have the name of a contact person who would take care of things if Kaiser dragged their feet.

Within the next couple of days as promised, I received the details of the decision. The medical reviewer (who was nameless but I wonder if he/she was one of the many specialists I had seen over the years—that would be a funny coincidence.) essentially agreed that it was medically necessary for me to have this surgery in a hospital setting with anesthesia despite the fact that it was a dental surgery which technically is not covered by Kaiser. I could tell they had thoroughly gone over all the paperwork I sent them because they actually quoted me from the personal medical litany I included—not just the professional medical records. That pleased me to see that what I had to say was given its due attention. I breathed easier when I saw the name and number of the DMHC contact should Kaiser continue to stall. I noted when the letter was dated and reminded myself to call the DMHC should the fifth business day come and go with no word from Kaiser.

Late in the afternoon on the fifth business day—essentially as late it could possibly be without Kaiser violating the arrangement—a woman from Kaiser Member Services called. She told me that Dr. Felsenfeld would be allowed to perform the surgery at a Kaiser facility. They needed to contact him to start the process of granting him hospital privileges. She also said the duration of the authorization would be determined by Dr. Felsenfeld’s availability. That seemed perfectly reasonable to me as I knew my doctor to be very busy. So I gave her his number and she said she would call him to get the ball rolling. If I had any questions, I could contact her. It would be that easy. I fought the urge to tell her I couldn’t believe that such a simple thing was made monumental by Kaiser’s bureaucracy. After all, she was just a cog in the machine. I did tell her I was glad this mess was finally over and I would be sure to call her with any questions or other problems. She got my meaning. I hung up with only a mild worry about how she would deal with the messy answering system at Dr. Felsenfeld’s office. I figured once she identified herself as being from Kaiser, and her business related to my dispute, maybe they would give her call a priority. In any case it was out of my hands and I could only be patient—for a reasonable amount of time.

Still something continued to bother me. The word authorization kept ringing in my ear. I realized that though Western Dental had authorized their part of the bargain long ago, that authorization had long since expired. They had told me at the time that it would be a matter of nothing to extend the authorization. I was afraid that was just an easy way to get me off the phone. So I called my dentist’s office up and explained the situation, asking to speak to the person in charge of authorizations. They said she wasn’t available. Determined to get this done, I put on my raincoat and went out in a pretty bad rainstorm to go to their office. The waiting room was packed. I explained my situation to the front desk and she relayed the information to the person in charge. She sent back a cursory response that they couldn’t reauthorize it. Not to be out done this far into the game, I asked to speak to her directly to more fully explain the details. I was told when she was finished with another client, she would speak to me. I waited, standing for most of the time with one of the office staff telling me at intervals that she was still busy. I waited as long as I could but I had to leave when I couldn’t wait any longer. I told them I would be back.

My family was in town at the time. I spoke to my sister who is a nurse about the situation. She pointed out that since the authorization was given once, they should not have any problem giving it again since it was never actually carried out. She also made a point that maybe I should wait to see what the authorization timeline would be for Dr. Felsenfeld so I could more concretely negotiate with Western Dental about the timeline for their authorization. What she said made sense. So I decided to wait and hold off on going back to my dentist. With the holidays mixing things up, that wait turned into longer than I would have wanted. But in the interim, I realized, to expedite the process, maybe I should talk to the western Dental Corporation directly about extending the authorization they initially gave—cutting out the middle man and hopefully cutting time and aggravation. Now that the holidays are over, I hope I will get the answers I want and everything will finally be in place.

Health Care Saga Part 9--I think I'm Spinning My Wheels

2010-10-17T16:35:00.000-07:00

I told my sister-in-law once that this health care saga will probably be a ten parter before it is done. I said that sardonically but it looks like it is truth. All this hassle for a few little teeth most people don’t think two thoughts about. In any case it looks like it is out of my hands now. A few weeks after I finally straightened out the paperwork to get my records to the DMHC I contacted them to make sure they did indeed receive my records. My lawyer, (boy do I like the sound of that) reassured me that they had and everything was ok. The procedure is that the independent medical reviewer had a month to make his determination and get back to her. By the time I had emailed, that meant another week or so. Satisfied that my case was not forgotten, I went about my daily business and got ready for the new school year. After the school year settled my mind wandered back to my teeth—as always. I emailed my lawyer for an update and strangely, she didn’t get back to me immediately as she had before. I immediately thought—“Oh crap, they finally forgot about me or hit a dead end.”

Actually, they hadn’t forgotten me. About a week after I emailed my lawyer, a letter came through snail mail. The return address was the DMHC. The letter was not signed by my lawyer but a legal secretary working with my lawyer. Essentially the letter said that my case is turning out to be more complicated than anticipated and would need further investigation. Obviously it had exceeded the 30 day time line and they didn’t indicate how much longer it would be. It completely baffles me that a case of simple tooth extraction—even with my medical complications—could be so complicated. My only conclusion is that again, it’s not about my teeth. It is about an HMO unwilling to do its job and look after the health of its clients. My husband thinks Kaiser is throwing paperwork at the DMHC. I would tend to agree with him. It turns my stomach to think of all the money Kaiser is wasting trying to quash my request. That money has probably exceeded by now the money it would take to actually grant my request. I ask you, is this the way you want your money spent by your HMO?

I would love to keep up this blog, but this particular issue is just going nowhere and is literally out of my hands. I am satisfied that the DMHC is doing everything they can and will go the distance with this. But without knowing the details of what is going on with my case, I really have nothing to report until the DMHC either wins the case or gives up. So, I want to go back to my original intent of this blog. I intended this blog to be a record of issues I or my students encounter on a daily basis as people with disabilities. I promise that as son as I know anything else regarding my teeth, I will post that. Until then, I would like to discuss an issue in my next post that I have considered from time to time over the years and most recently in the past week it came to my attention again—eugenics. Look for a new post with my thoughts on the issue soon.

Health Care Saga Part 8--Is there an end in sight?

2010-08-05T00:30:00.000-07:00

I was really discouraged after my health insurance rejected me. I really didn't want to ask them or any other entity to allow me the right to have a simple procedure done which on anyone else would have been done in a heartbeat. I was being rejected because of my disability. I knew it was wrong. I knew it was unfair. I knew it was unjust. But, I was sure no matter what, I'd find rejection around every corner in the future. Of course this is what insurance companies secretly hope--but never admit to. They hope we stop "demanding" things of them--even if it is our right--and take care of health issues (or not) ourselves. Thus saving them money but not our health.

Asking for assistance has never been my strong suit. Usually I find a way to accomplish something alone, or I don't do it at all. In a given situation at times, that has left me more isolated than I should be. But usually I have been pretty successful and satisfied with what I've accomplished. I was tired of being strong and fighting though. My husband who really has only begun to vicariously experience the issues I've always faced is and has always been supportive of me. Even within our limited means, he was willing to enlist a lawyer to fight this if need be--no matter what the cost. My parents, having seen me face issues from Day One of my life were tired of this too. Their solution was simple, well meaning, incredibly generous, but in the end completely unrealistic. They just wanted it DONE. They offered to pay for the procedure themselves. As much as I wanted it done too, I couldn't let them do that. They are retired. As well as they have planned for retirement, they still need to be careful with money. This is why I couldn't let them do this. During one of my past surgeries I happened to discover that warmed blankets supplied by the hospital alone cost $80! That's just for blankets! I couldn't imagine what anesthesia, scalpels and all the other paraphernalia involved in surgery and even a short hospital stay could add up to. Thank God my surgeries growing up were fully paid for by really good PPO insurance. My parents would have been beyond penniless by now otherwise. I just could not let them do that now.

I finally looked at the options my health insurance provided me. I discovered that I could file a complaint--not a grievance--with my state's Department of Managed Health Care. I really did not understand the process or what in entailed and I really didn't think anything would come of it. But I also knew I couldn't live with myself if I didn't try every possible means at my disposal to make this right. This was another moment in which it was clear to me that it wasn't about my teeth anymore. It was about what was right. I also remembered a story my older brother told me about when I was little which he swears by all that he holds holy is true though I don't remember it at all.

I must have been no more than eight years old and I'm sure I looked even younger. I was discussing something with him though what exactly it was neither of us are sure anymore. Nevertheless, by the end of the discussion, I empahtically declared, "I don't want to do what's easy. I want to do what's right!" The picture that story conjures up for me always makes me smile. I'd be surprised if it didn't make everyone who hears it smile. More importantly, this story makes me focus in situations like this and really fuels my engine to move on and see it through. If I was that determined as an eight year old, I should be at least that determined as an adult. So, with that image dancing in my head and my own words buzzing back to me in my ear, I filled out the application and added supporting documents and mailed my complaint to the DMHC. I went on with my daily activities in peace feeling I had done everything I could do.

It can't surprise anyone that in the deep recesses of my mind, I still thought about the situation a lot. After all this effort, could it be realistic for anyone to put it to bed? In the most unlikely of times the issue would pop up in my head and I would wonder what--if anything--was being done. Weeks went by and my doubts started grabbing at me again. I had begun to equate the silence with rejection. It was crystal clear to me that I was rejected again. So, my wait for a resolution became a wait for a rejection.

I got busy with end of the school year activities and family obligations and so I kept putting off contacting the DMHC to expedite the inevitable--yet another bureaucratic rejection. Literally, the day I decided to take a deep breath and face the issue I kept putting off, I received a phone call. In the amount of time it took to say "hello", I had a lawyer from the DMHC--for free.

While I had been ruminating all this time she told me they had been working on my behalf. Finally someone on my side who wasn't related to me! Maybe something could actually be accomplished. They looked over all the information I had sent them and tried to negotiate with Kaiser to no avail. My lawyer confirmed what I and literally anyone else who hears my story have said all along. This should have been taken care of ages ago and there is no reason for Kaiser not to pay for it. The fact that I had jumped protocol and already consulted an expert in the field of oral and maxillofacial surgery was finally working in my favor. When my lawyer saw that, she reinforced my notion that with his evaluation there really was no excuse for Kaiser to hem and haw over the issue. What she had though was essentially my summary of the events up to now. I don't mind admitting that I believe it to be very accurate. But that wasn't good enough to force Kaiser's hand. She needed my permission to have my doctor's release any medical records supporting this assertion for an independent review by their doctors. She was sure that unlike the "independent" review from the doctors employed by Blue Cross I had almost a year ago, her doctor would back up my claim. In a ten minute phone call, my sputtering engine was fueled again. I hung up on her and was immediately all over the phone again to my dentist and specialist.

My dentist is literally down the street from me and has a small staff. When I called them up to brief them on my status they remembered me saying the now redundant phrase "I can't believe this hasn't been taken care of yet!" They explained to me I simply needed to come in and sign a form releasing the information and they would send whatever was needed to my lawyer--no muss, no fuss. I was in their office by lunch time.

Getting a hold of my specialist, God love him, was another mater. I hadn't contacted the office in months. They had a new phone system that kept me on hold for a minimum of 20 minutes at a time. Frustrated I kept hanging up if I waited more than a half hour only to dial again a few minutes later to see if my luck changed. In between these calls, my lawyer actually called me back to see what the hold up was. She was ready to go and wanted to waste no time on this situation that has dragged on far too long. After innumerable call backs and countless minutes on hold I finally spoke to someone. She confirmed that things were crazy in the office with the phones ringing off the hook and this system seemed to benefit no one. I was sympathetic for a polite minute and immediately went into my current situation and request. Like my dentist, she offered that I just needed to sign and submit a form to have my medical records released. My specialist is on the other side of town so I couldn't just drive over to sign it. She offered to fax it to me and I just needed to fax it back. Within the next half hour it was a done deal.

I waited. I knew it would take a week or so to get everything together so I tried to be patient. My lawyer kept calling me up to reiterate we needed to move on this and she needed my information. I braved my specialist's phone system a few times to try to talk to the office manager since she was my main contact. I left messages whenever I got someone on the phone. I sent her emails that were never answered. Finally, she got back to me by email only to state that she was no longer in the office and I needed to speak to her replacement the following week. My head was spinning with the absurdity of the situation.

So, I did just that. I braved the phone system from hell yet again until I got someone on the phone and left messages--messages that were never answered. In the mean time my lawyer informed me they could not continue to keep my case in limbo and said they had to "administratively close the case". She assured me it would be a matter of nothing to reopen it when they got all the documents in hand and asked that I keep her posted. I understood though my resolve was flagging once more. This simple task was being made Herculean by an inept phone system and an inability to return a phone call. Would this ever end?

Two weeks after the initial call to the replacement office manager, she called me asking "How can I help you?" I bit back on the idea that for starters she could return my calls in a more timely manner. Instead I inquired about the status of my request to have my records released. This was news to her. She said there was no record of this and they had received nothing. I recounted my actions to her, telling her who I had spoken with, what I was told and how I had followed through. I even told her the exact date I faxed the release to their office. That caught her attention. Apparently I was not supposed to fax the release to their office--it should have gone to the medical records office. What a concept. But the reality was no one in the office had actually told me that and I couldn't believe no one forwarded my request to the records office or called me back with a "why are you faxing us this form?" That seemed the logical thing to do. I got along so great with my doctor and trusted his knowledge and skills implicitly but the inefficiency and lack of communication coming from his office staff was so infuriating it was almost laughable.

Overlooking my issues with this staff, I asked for the number to the medical records office and a contact name so I wouldn't get shuffled among the staff. I immediately called the medical records office. I talked to a very nice lady who gave me the same answers. I needed to fill out a form which she expeditiously emailed to me. This time apparently I had to provide payment to get copies of my own medical records. I knew some doctors did this and it's a whole issue I could go on about. It seems illogical to me that I would have to pay for copies of my own records. It's a doctor's way to nickel and dime you in my view. In the interest of getting this done though I bit my tongue for the millionth time. I filled out the forms, wrote out a check and mailed it in. I reasoned fifteen bucks was a small price to pay for closure in this issue. That was two weeks ago. I called my lawyer when this was all happening and she marveled at the inefficiency of the situation with me. She reiterated she already recieived the records from my dentist but once the records came in from my specialist, my case would be up and running and good to go. She would let me know when that happened. I'm still waiting for that call.

Health Care Saga Part 7--Unbelievable

2010-07-06T16:47:00.000-07:00

I know I haven't written in close to forever. But believe me; my medical issues are on my mind every day. I guess my excuses could run the not so imaginative gamut of being busy, work issues (which by the way could fill a whole other blog) or just plain day to day dealings which distract me from something that in many ways I tend to feel is out of my hands. I guess after my last post I experienced a period of paralyzing frustration--figuratively speaking of course--in regards to this issue. But in spite of that, incremental things have been happening.

In relation to my personal issues but still a distracter I have been watching closely the development of health care reform in this country. Let me say first I was for the whole shebang. I wanted free universal health care for everyone with a fair, open handed focus on client needs. I figured that if that could pass, I wouldn't have deal with the issues I'm having today. In the back of my mind I knew that wouldn't happen but my motto is hope for the best but expect less. Despite all the letters I--and others--wrote supporting this ideal, we settled for less--as expected. For right now, it doesn't affect me much. I have insurance through my job and it is paid for. I'd be interested (though trepidatious) in testing the waters if I were to be unemployed or had a job that didn't involve health benefits. I know I've mentioned in other blogs that when I did pay for insurance, premiums were upwards $400 a month. The MRMIP insurance was also the only one to take me. It was specifically designed as a quasi-government controlled private insurance option just for people like me--someone no other company wanted to lose their money on. The new law changed some of that. The new law guarantees my right to insurance. No one can deny me on the basis of my preexisting conditions. I believe that. The law also states that premiums cannot go up so high that I will go broke paying for insurance. This is where I am a little skeptical as to how it will be played out. Only because expense is a matter of perspective. What sounds expensive to me on a monthly teacher's salary is pocket change to the CEO of a Fortune 500 company. I exaggerate a bit I know. But my point is, will it really be that affordable? Clearly all these things and more need to be ironed out over the next few years.

That being said, considering how many times legislation of this nature has tried to pass into law and failed, I am more than impressed by Obama's efforts in rallying and convincing the people around him in favor of this cause. He managed to do what other prominent members of our government in decades past failed to do. That in and of itself we should be happy with. With this foot in the door, it is more possible that future generations will enjoy the benefits of free, universal health care. We've been given cause to hope.

Not to put a damper on this, going back to my present situation, the new law does not help me in my current situation. True, I cannot be denied insurance, but they can still deny me special considerations when I need a nonstandard procedure done. Despite whatever my personal need may be, they can still tell me it has to be done their way or no way. When I last posted, I put in my requests to have my health insurance pay for hospitalization and anesthsia and my dental insurance to pay for tooth extraction. My dental insurance expeditiously approved what I wanted to do. My medical insurance continued to stonewall my request.

Ever the optimist--and with my husband's full support and encouragement--I filed a grievance with my HMO. I thought surely someone would see this was a perfectly legitimate request. There has to be someone at Kaiser who can see beyond the bottom line and was concerned with my health. The caseworker assigned to my case agreed with me. One of her first comments after I told her my saga was, "That sounds perfectly reasonable. The process she told me later was that, she would go to the local medical review board of the company and present my case. She just needed supporting material from my doctors regarding my condition and what I wanted to do. No problem. I ask my doctors to write up letters of support. It took a few weeks to hear the determination.

They rejected me. My case manager thugh immediately filed for the next step. She appealed to the company's corporate medical review board. Again, another few weeks pass. Another rejection. This time my case manager doesn't even bother to call me, just sends me the rejection letter. Along with it, are different courses of action the insurance company provided me with in case I decided to "pursue the matter further". Fed up again, I decided to stew on my options for a while.

Health Care Saga Part 6

2010-01-20T17:00:00.000-08:00

I promised to give updates on my quest to fight the health insurance companies for the right to do what I know is best for me. Last time I wrote, my medical insurance denied my bid to cover the specialized extraction of my wisdom teeth which would involve a doctor I chose, general anesthesia, and hospitalization. Their reasoning? It was a dental issue, not a medical issue. They told me to go to my dental insurance.

So, I gained authorization--quite expeditiously I might add--to see my chosen doctor for a consult citing his expertise and specialization in my medical needs even though he was a provider outside their network. Unfortunately for me, my doctor has a busy practice. I could only book appointment for more than a month in advance. I had told his office I had an authorization from my dental insurance. They went ahead and made the appointment. Since my insurance approved the visit, it never occurred to me that the doctor's office would have a problem with the company paying for it. So I never thought to ok the company with the doctor's office. Why would the company authorize me to see a doctor who doesn't work with them?

I still don't know why my dental insurance would authorize my visit to a doctor who doesn't work with them. What I do know is that when I arrived at my appointment, I gave them my insurance card, and they promptly said they don't accept this insurance. When I asked why, they claimed that they have had difficulty in the past getting paid by that company. I then reminded them I had an authorization from the company. They took it and placed it in my file stating they would double check with someone on what to do. A few minutes later they told me that I had to pay for the visit out-of-pocket and then submit my receipts to the insurance company to be reimbursed. I didn't know any different and this sounded kosher to me so I went ahead with it. All told, the visit and x-rays cost us $170 which wasn't too bad. The x-ray's and consult went off without a hitch.

My doctor is very nice and pleasant. A doctor with his years of experience can either be haughty or really worn out and sometimes careless. But not so with him. He is very busy but personable, and helpful. I told him a little bit about my insurance issues. So he offered several alternatives to the work we wanted to get done. A root canal was suggested. The problem with that was regular dentists don't feel comfortable working in my mouth since for them, I can't open my mouth far enough. At that, he asked me to open my mouth as wide as I could. "That's not so bad!" was his comment. Let's remember though, he sees patients with facial structures far more compromised than mine. To him, I barely have a facial deformity. To Joe the Dentist, my facial deformity is a huge impediment to working on my teeth. He suggested since my wisdom teeth don't actually bother me, to get the cavity filled by one of their dentists there at the University who would not be hesitant to work with my facial structure. The problem with that is any other health plan offered by my work specifically states that they don't work with his university. It's also not 100% certain that the insurance I'm currently under will cover this procedure.

To be very honest, now my whole saga is more about getting the insurance companies to do their jobs than about taking care of my teeth. My doctor sensed this and with that, he said maybe we can get my medical insurance to pay for the hospitalization and anesthesia and the dental insurance to pay for the actual teeth extraction. He said both companies on a very rare occasion, have allowed clients to get things done at the university. This sounded like a good solution to me so we ended the consult with an introduction to the clinic manager. She would take care of the insurance rigmarole for me. She asked me to email contact information for my primary care physician, took my dental insurance information and asked me to be patient. She would try her best to get something done. So I thanked her and left.

At home I immediately sent her my primary care physician's contact information. I then called my dental insurance company to find out about the procedure to get reimbursement for my visit. They were shocked that the doctor's office didn't accept the authorization. I told them honestly what the office had said about their company. They were affronted by the idea that they were difficult to work with especially since I had been issued an authorization practically guaranteeing payment. They were also stumped by the idea that they were to pay me back for the money I spent on the visit. They stated as a policy, they never reimburse clients; they only work with doctor's offices. She stated it was not proper protocol and what needed to happen was that, the office needed to reimburse me and then bill them to get paid. She asked for the contact information for the office. I gave her the clinic manager's name and number. She actually put me on hold for a bit while she called them immediately. After a few minutes, not wanting to keep me on hold for too long, she came back and said no one was answering but she would continue trying to get a hold of someone that day. I took her name and number so I could follow up on this matter myself in a few days. There really was nothing else I could do. I didn't care who paid me back as long as someone did. So we hung up.

I asked my husband, am I carrying this issue too far? Am I the one making this harder than it should be? According to him, no. What do you think?

Health Care Saga Part 5

2009-11-21T16:20:00.000-08:00

The ENT was right. I now had my general practioner and an ENT recognized by my HMO group asserting to the health insurance company that I needed to see the specialists I wanted. However, the insurance company refused to take their reccomendation. They referred me to an Oral Surgeon within my medical group. Let me note here that an Oral Surgeon is essentially what I wanted to see at UCLA all along. The difference is that the person I wanted to see is speciaized in my disability of Hemifacial Microsomia. The Oral Surgeon that my insurance wanted me to see was not--but he was within my medical group so that apparently was good enough in the eyes of te insurance company.

This time I had no problem making an appointment. The oral surgeon was very personable. I liked him off the bat. Yet again I explained to him my saga and asked that he just give me a referral to UCLA. As a matter of form he had x-rays taken--free of charge--and he looked at my teeth. He was so pleasant about the whole deal that I impulsively told him that if he thought he could do the job, I would let him. That is the confidence he inspired and indicates how comfortable i was with him. I meant it too. Despite that, he agreed that the best thing to do was to have my wisdom teeth extracted by the specialists at UCLA in a hospital setting. He would write to my insurance company stating as much. I was so happy. I thought after roughly 10 months of working on this, I was home free so to speak.

The next hurdle I had to jump though was just about an inept medical office and lack of communication between the medial office and the medical group. I left the oral surgeons office with the standard advice to wait a week for the referral to go through. So I did. After a week I checked with the medical group who maintained that they never recieved anything. I called the doctor's office. They maintained that they mailed the refferal since they had no way of sending it electronically. Furthermore, while they had a "notation" that it was sent, they had no date stamp though they assured me it was sent a day or two after my visit. I found all this strange in this day and age of computer dominated communication and data processing but I gave them the benefit of the doubt.

I called the medical group back and had them recheck their records. They found nothing. I explained that the office stated that they couldn't send the referral electronically but they could fax the information. But they didn't have a fax number for the medical group--only a physical address. I asked for a fax number and a contact with the medical group to send the fax to. They gave that to me and the next day, I relayed the information to the medical office. They assured me it would be taken care of and to wait the standard week. again I did. I called my medical group up again. Once again they assserted they had reciecved nothing. So again I called up the doctor's office. They rechecked the information I had given them and asserted they had sent the fax to the correct number and person. They even gave me a date, time and confirmation number.

Still playing the go between I called the medical group up again. I told them the office had sent the fax to such and such a person and they had given me proof. I was even ready to give them the name of the contact person in the medical office and her phone number and tell them to deal with this mess among themselves. I was tired of acting the go between.This time they paid attention. Out of the blue they informed me that the fax number would not have gone to that particular office. Regardless, they would not have recognized the fax anyway since it did not go through the proper protocol--the electronic processing service they used. The difference this time for me is that the medical group finally took the problem in hand. Before I even asked, they offfered to call up the medical office themselves and talk to the contact person and get this miscommunication squared away. I gladly waited on hold while she used another line to contact the office.

After waiting a while, the medical group representative came back on the line. She had spoken to the office contact. Apparently, the representative has to instruct the office contact on how and where to send the referral electronically. This baffled me as I would assume in this day and age more and more companies process things electronically. I couldn't see why this medical office didn't do it too. At the very least they should have been informed of the proper protocol long before this situation in the spirit of working efficently with medical groups they are contracted with. But that is another issue. After several calls instigated by me, they finally submitted the paperwork through the appropriate channels. Again I was prepared to wait the standard week.

Before the week was up, the medical group contacted me by phone. The representative stated, two doctors employed by the insurance company, who had never met me in person, reviewed the paperwork connected to my case. Despite all reccomendations to the contrary, they both denied my claim on the basis that since it involved my teeth it was not a "medical" issue but a "dental" issue. So my dental insurance should pay for it. I explained that because of my medical disability I needed to be hospitalized for the procedure as a protective measure, I was told by my doctor it was a "medical" issue. My dental insurance I was told would not pay for the hospitalization and anesthesia. Apparently it didn't matter. As soon as those unknown docors/insurance employees saw the word "teeth" they washed their employers hands of it. They told me to go to my dental insurance with my case.

I did. I walked in to my dentist's office without an appointment and talked to the person in charge of dealing with insurance. I explained to my dental office the whole saga and got them to write up another refferal to send to their company. I didn't even need to see the dentist. a week later I recieved an authorization for a special consult with the specialist at UCLA.

This is basically where I am at now with this saga. More than a year later I am back at square one. My dental insurance could still deny my claim on the grounds that they won't pay for hospitalization or anethesia. The surgery scheduler at the UCLA office seems to think they will. I have yet to actually speak to the employee in charge of insurance. I even called up my dental insurance company to ask on a theoretical level, has the company ever paid for hospitalization and anesthesia of a dental procedure if it became necessary. I did this because I didn't want to go through thos process again and end up with another denial. I got a standard answer which protects the company but give me no reassurance: "we would have to see the paperwork submitted by your doctor in order to make a dertermination". That answer may have satisfied her employer but not me. So I am biting the bullet. I made an appointment with the doctor at UCLA. Unfortunately for me he is a very busy man. I couldn't get an appointment with him until the new year. I even talked to his office explaining the whole situation essentially saying this was a formality so my dental insurance would pay for the procedure. I asked if they could bump me up to no avail. I guess my personal goal to have this done by Thanksgiving will not be reached.

The whole debate revolves around: is this a medical or a dental issue and what company is responsible for paying for it. I personally maintain it is both. But by the specific nature of it, either insurance should be prepared to cover it. Disabilities do not come in neatly defined packages. As people with disabilities become more prevalent, prominent and assertive insurance companies must be prepared to cater to their multi-faceted needs in an efficient, effective and humane manner.

Since my saga is dormant for the time being, expect my next blog to cover other issues of life with a disability--either mine or someone elses.

Health Care Saga Part 4

2009-10-23T13:30:00.000-07:00

Thanks to my former doctors, I finally had a refferal to the specialists I needed close to home. I was so relieved that I disregarded the proper protocol my HMO deemed necessary for them to pay and independently made an appointment to be seen by these specialists. I saw them on my own money and they agreed to perform the procedure. This is when another round of problems started. Some of the problems were caused by the insurance company and some by the general inefficiencyof the medical office.

After I gladly paid to be seen by the specialist, he informed me it may take a while to get to my case. I was fine with that. Knowing the kind of work he does, I knew this procedure was not a priority for him and I understood why. So I limited myself to contacting the office's surgery scheduler once a month to see if a date had been set. I became concerned when a couple months went by and that person had not returned my emails or phone calls. Finally, I got a response from her to the effect that she had forgotten all about me and she would get to it right away. Again, I knew my case was not a priority and dismissed the oversight once. Again a couple more months went by with a lack of communication from the specialist's office. Again, my contact with the doctor apologized for forgetting about me but this time informed me that after she tried to make arrangements with my insurance, they refused to pay because I did not go through proper channels.

Coincidentally during this time, I had changed dentists and went yet again for another cleaning. They found the same situation as the other dentist and agreed the specialist I wanted to see was the best way to go. They even willingly wrote me a refferal to the specialist. I hoped that it would speed this process up. When I mentioned that I had done this to the surgery scheduler, I was informed that because what I required was "major surgery" the issue was no longer seen as a "dental issue" but a "medical issue" in the eyes of my insurance company. So any reccommendation from a dentist would be ignored since they were not "experts" in this area. I was informed I had to get an official authorization from my general practioner.

Never having used an HMO before, I was frustrated by the process. However, I complied with the request. I went to my general practitioner and gave him a run through of what I had been doing and what I needed in regards to my teeth. He explained to me that he could write up a request to see the specialist I wanted. However, my insurance would likely not grant it because my specialist was outside my medical group. The insurance would likely send me to a series of other specialists within my medical group for their reccomendation whether or not they had experience with dental issues.

He was right. The first specialist my HMO wrote an authorization for was an Ear, Nose and Throat Specialist. Just getting an appointment with this doctor exemplifies how useless this refferal was for my case. I called the office 3 times, each time being told by a medial assistant that the refferal was inappropriate and that they do not to the kind of work I was seeking. I checked back with my insurance who insisted this refferal needed to be followed through with. So I called again. This time I spoke with a cooperative medical office assistant. I made the appointment. The day of the appointment, I paid the co-pay. When I saw the doctor, he immediately recognized the futility of the visit. But called it the "nature of the beast". The "beast" being the HMO system. After I outlined to him my saga and what I wanted to accomplish, he acknowledged that the specialists I wanted were appropriate for my situation and was willing to write a reccomentation to them. He warned me though the insurance company may see fit to send me to a completely different kind of specialist within my HMO group before they would be willing to do as I asked. He was right.

In the next installment I will tell you what I am currently dealing with in the battle of wills between myself and the inept health care system.

Health Care Saga Part 3

2009-10-04T21:34:00.000-07:00

About three years ago I got married to an independent-minded artist. He is self-employed and trying to make a name for himself in the difficult world of the arts on his terms. Being self-employed, he determines what projects he does or does not want to take on. Ideally he works when he chooses to. I think this is a set up that many of us in traditional nine to five jobs would like to have. Despite those perks, being self-employed also means added costs. My husband was maintaining his own health insurance. My husband is nondisabled. So, in comparison to my premium requirements, he paid about a fourth of what I did on a monthly basis. Still, it was expensive to maintain given his erratic employment while he establishes himself as an artist. We couldn't enroll him in my district's insurance plan unless I enrolled as well. For this reason, we decided I would give up my private insurance coverage and enroll us both in my district's group insurance plan. Together we would save upwards of $500 a month. The savings were needed but the headaches and the worry continued.

During this time, my husband also persuaded me to see a dentist after many years without seeing one. As I've mentioned before, seeing a dentist was always problematic for me. But I went anyway since I had the insurance and it was the responsible thing to do. I got my teeth cleaned and as I should have expected, the hygienist told me I had cavities. When I saw the dentist though, he took one look at me and said, "Were you in a car accident?" Before even looking at my teeth. I don't expect them the know the particulars of my syndrome off the bat. But that comment shows the average dentists frame of mind. They aren't expecting to see anything beyond the average facial structure and teeth. This is a worrisome predicament as people with disabilities become more prevalent and mobile in society. In any case after I educated him regarding my disability, he barely lifted my lips to look in my mouth--literally-- before saying I was fine and tried to dismiss me. When I mentioned the cavity the dental hygienist found, he made a token effort to look better and flatly said "I don't see anything" and walked out. I didn't see him or any other dentist for a year until Open enrollment allowed me to change dentists.

My next dental visit was a little more productive. The technician at the new office cleaned my teeth. The dentist acknowledged my cavity. But not before he asked me if I'd been in a car accident. Since the cavities were on my wisdom teeth he recommended that my wisdom teeth be removed. In retrospect I suspect he willingly referred me the office's oral surgeon because he didn't want to make the call as to whether my wisdom teeth could be removed in the office or needed a special referral. I made an appointment for a consult/procedure done during the summer when I was not working. The day of the procedure, I went to the dentist's office and met the oral surgeon. He looked at my x-ray's for the first time. He asked me a few questions about my disability and stated that he did not feel comfortable performing the procedure. He was concerned about the pain involved even with medication. He felt due to the structure of my jaw, the Novocaine medication would not distribute effectively and therefore, there would be unnecessary pain involved. He was also concerned that there was not enough bone implanted in the reconstruction site along my jaw. He was worried about breakage. All this amounted to the surgeon feeling that I was better off with someone more specialized with my disability and having the surgery in the hospital.

This all made sense to me and in a way, I expected as much. What irritated me was that the dentist, who I'm sure could see mine was a complicated case, didn't want to make that decision. He passed the responsibility on to the oral surgeon. The oral surgeon and the dentist I feel were both remiss in that they did not consult before hand on what was obviously a complicated case to determine the appropriate course of treatment in an expeditious manner. I was left to set aside time expected for a procedure and then had that procedure denied for foreseeable reasons.

The oral surgeon, while admitting that he did not have the expertise to perform the procedure, at the same time refused to guide me to what to do next. In other words, he refused to give me a referral to someone who was an expert. When I go to a doctor who admits I need more specialized help, even if he does not know of someone off the bat, I expect some research done within their networks to get me a referral. That's usually been the case in my experience. He flatly refused to refer me to anyone or tell me where I could look for someone. So I left the office and had lunch since I had not had anything to eat for 24 hours, expecting a procedure. Sometime passed and I received a hand written note on non-professional stationary from the oral surgeon explaining what needed to be done and recommending that it be done "somewhere else". he left no referral to a specific doctor or recommendation where I could begin to look. Fortunately, in this case I was more of an expert at this than him. I called up my reconstructive surgery specialists upstate that had reconstructed my jaw when I was a child. Thankfully, the the head of the department is still there. After hearing of my plight, they gave me a referral to where top look next. While that was a relief, it did not end my saga. I will continue the next leg of the saga in another installment.

Healthcare Saga Part 2

2009-09-06T16:26:00.000-07:00

For many people who finish their schooling, the first few years in the job market are not quite what they wanted. They have to work their way up to the job they really want. Most people would say that's the American way--work for what you want. I won't argue that having spent a lot of time, money and effort at school to gain the skills for your chosen career should be counted as the "dues" you pay to get what you want--that's a subject for another blog series. Truth be told, I was one of those lucky people who, as soon as I finished grad school, I got the job I wanted--I was employed as a Special Education teacher. I was lucky to get the job despite having a visible disability and I was lucky because they offered group health insurance.

I readily signed up for dental and vision insurance--something I didn't have at the time. However, being wary of what would happen to me and my health care needs if I were to lose my job, I kept my private health care coverage. At first I signed up to also participate in a group HMO plan offered by my school district. I didn't plan to use it, I just wanted it as a back up. When I started going to my doctors for uncomplicated visits--a sore throat, a check up, etc.--that's when the insurance problems started. I was the consumer on both policies, I felt I had the right to choose which was my "primary" policy and which best covered my needs on a visit by visit basis. The insurance company would be in business no matter which I utilized--that's what paying my premium was all about. In hindsight I was being idealistic at best. I went through a year of infighting between my two policies. Ironically both my PPO and HMO were with the same company. I had done that deliberately thinking it would make things easier. They acted like they were each from competing companies.

First there was the issue which policy was actually my "primary". I wanted it to be my private policy as I felt they had better coverage--even though the other one paid for some things the private did not. That's the one I was actually using. According to the companies, this where the customer is not always right. I don't get to make that decision for myself. Apparently my district paid HMO was my primary. So my PPO gave me the bill to have my HMO cover it. On seeing the bill, the HMO promptly told me that because they did not authorize anything they were not responsible for paying it even though they were my primary insurance and the other policy refused. So I went back to my PPO who continued to refuse. This went on like a championship ping pong match for at least a year if not more. In the end I paid the bill in excess of $300 out of my own pocket so my doctor could get paid and I could be done with the headache it was causing me. That was probably not the most assertive way to go about it. But it was the one I chose at the time. I was lucky in a way I guess. I hate to think what the out of pocket expense would have been if I was having a bad year with my more specialized medical needs. Needless to say, I only lasted a year on my group plan. I decided the bureaucratic mess wasn't worth it. When open enrollment came around for my district again, I opted out of the medical insurance coverage though I kept my vision and dental plans as they were.

At this point I haven't even gone to the dentist yet. I still didn't want to face the inevitable questions, discomfort, difficulties and most of all the ignorance of your average dentist in regards to my dental needs. Even if someone else would pay for the visits. I promise my next installment will talk about my dental issues.

Healthcare Saga Part 1

2009-09-05T09:02:00.000-07:00

It occurred to me that my letter to a government official was kind of vague as to the difficulties I've had with my health care. The issue actually spans several years. So I thought I would recount the story and try to explain how I got to this point.

I mentioned that I have Goldenhar's Syndrome. It is a rare birth defect that received some minimal press several years ago when it seemed that soldiers returning from Desert Storm were having children with this syndrome caused by the biological warfare exposure. I never followed if anyone actually found a definite scientific causal link to this theory. Even with the relative upsurge of babies with this syndrome in the aftermath of Desert Storm, I don't think it has been enough to reclassify out of the "rare" category and therefore, I doubt much research is being done to understand the disorder.

I digress. If you want to be nit picky the saga I am experiencing now actually started almost 20 years ago. I was wrapping up 4 years of surgeries to reconstruct my jaw. My specialist who had prepped me for these surgeries since birth, planned and organized the surgeries and surgeons, wanted to talk about procedures--both surgical and non-surgical still to come. I was 18, about to go to college and realizing that I was about to hit a 20 surgery milestone if i hadn't already. I told my doctor that I felt that all necessary surgeries had been done and I didn't want to do anymore. I wanted to be left alone. At the time she was recommending I get my wisdom teeth out and get braces. Simple, common procedures which shouldn't be that big a deal. But I was having none of it. I wanted to go to college and get on with my life with none of that stuff--except what was absolutely necessary--hanging over my head.

So I went to college and graduate school and except for visits to my general practitioner for common colds (and chicken pox) as well as maintenance visits to some of my other specialists, I only had one surgery. This was a medically necessary, unplanned surgery caused by my hydrocephalus. I have a shunt to prevent build up of cerebro-spinal fluid in my brain. The shunt or tube finally broke after 16 years. It needed to be replaced or I was going to slowly lose my senses and various other functions of life. So I gladly had the surgery and continued on with my life. I was still under private PPO health insurance that my dad was paying the premium for. So having the surgery was no problem.

One doctor that I was not seeing during this time was a dentist. I always had trouble with dentists. They found it hard to work on my teeth and usually made unhelpful comments. Besides, the private insurance I had didn't cover dentists. So I figured the difficulties and comments weren't worth the out of pocket expense. So I brushed my teeth thoroughly and hoped for the best.

In my next installment, I'll talk about what happened when I switched to employer paid health care and finally went to a dentist.

Open Letter Regarding Healthcare Reform

2009-08-13T13:48:00.000-07:00

Dear Government Officials:

My name is Maria Zuccarello. I am a fully credentialed Special Education teacher for the Los Angeles Unified School District. I also have a Master’s degree in Special Education. I am writing to urge you to take a vital and necessary role in crafting healthcare legislation that will ultimately lead to universal healthcare coverage for every American citizen.
I have Goldenhar Syndrome as well as Klippel-Feil Syndrome. I have had over 20 surgeries to correct my facial deformities, eye problems, and my hydrocephalus. I wore a back brace for nine years for scoliosis. In addition, I must wear a hearing aide. Originally, some of my needs were covered by private medical insurance from my father’s group insurance plan provided by his employer. It never covered all of my medical needs resulting in thousands of out of pocket expenses. For example, my hearing aide was never completely covered. A hearing aid is a necessity for me to participate as a productive member of society. In fact, my most recent hearing aid was not covered by my current medical insurance provided by my employer, the LA Unified School District. My father, an immigrant from Italy (and naturalized American citizen) always wanted to start his own business and live the “American Dream.” One of the consequences of living his “American Dream” was the great difficulty of finding both affordable and comprehensive coverage that would cover all my medical needs when I was still a child. Health insurance companies were wary of insuring me. Because of my many surgical and medical procedures in the past and preexisting conditions, they saw me as an enormous financial risk with the projected future surgeries and procedures.
After a significant period of searching, my father found the Major Risk Medical Insurance Program (MRMIP) to cover most, not all, of my needs. This Government Program is for persons such as myself who are a “major medical risk”. However the premiums are astonishingly high and frankly prohibitive for most Americans that it is supposed to benefit. I was on this program--the only one to take me--for several years. It saw me through every doctor visit and surgery. Yet MRMIP did not cover the cost of my hearing aide.
MRMIP was not a perfect solution to my health insurance concerns, but it allowed my parents and I to worry less about paying for medical care or gaining permission for any of my doctor specialist visits. Therefore, I was able to concentrate on earning my BA from Pitzer College and my Masters from Cal State Northridge leading to my current career as an Educator.
Most of my career has been working in the inner-city. I have become more familiar with another form of government provided healthcare, Medi-Cal. All of my students have Medi-Cal. I have known other people who were disabled that were also on Medi-Cal. While it is good they have free government coverage--something I never had because of my family’s upper-middle class income--there are drawbacks. I have known people, who have waited months, if not years, for approval for glasses or wheelchairs. If a family is ineligible for Medi-Cal, they have limited options. Either they go to the Emergency Room or if they are lucky, there is a community clinic in their neighborhood. Often these clinics and emergency rooms requires lengthy waiting times and are severely understaffed with limited resources and time. This population does not have a voice in the current health care debate. Spending time advocating for their own healthcare using a system that makes getting adequate, affordable healthcare difficult cuts into school and work productivity. This results in the loss of knowledge or money with which they can pay for a more independent lifestyle. The cycle continues with no hope of respite.
No Health insurance or inadequate insurance equals more illness, more incapacity and more dependence on government offered living assistance (welfare, SSI and the like). The beginnings of Special Education had a purpose in assisting people with disabilities become productive and functioning members of society. However, I can also say, without proper healthcare the struggle to achieve this quality of life goal is difficult. Improper or inadequate healthcare contributes to absenteeism in both school and the workplace and an inability to work or learn at full capacity.
This brings me to the purpose of my letter and my plea to you. It is widely known that the United States of America is the only developed country without universal health coverage. I am asking you to advocate for the end of private insurance monopolies and the implementation of affordable or free insurance that addresses the real health needs of the entire U.S. population in a comprehensive and timely manner.
Appropriate and accessible healthcare is paramount to a fully functioning society where everyone has equal access. With healthcare taken care of, people can more single-mindedly apply themselves to study, work and the pursuit of opportunities that cater to their personal interests. The vast amount of opportunities offered in this country has always been the backbone of the American Dream. Prohibitive healthcare costs and inadequate coverage impede access to the American Dream.
You can argue that people with disabilities do have opportunity for proper medical coverage besides Medi-Cal, etc.--which are fraught with beaurocratic problems-- there is still a barrier--discriminatory cost and coverage.
People with disabilities are largely unemployed or underemployed. Some who are unemployed but have marketable skills become entrepreneurs and open their own business. This is a barrier to healthcare as people with medically based disabilities often rely on group insurance for affordable medical coverage. However, that is a bit difficult if you are unemployed, underemployed or even self-employed. Steps are being made to rectify this. The Americans with Disabilities Act, when enforced should make it easier for people with disabilities to find some form of employment. I also know, as a Special Education teacher, steps are being taken to encourage students to participate more fully in the community as a student or employee after high school. This should lessen the dependence on government assistance. This is still not enough. In economic hard times it is difficult for anyone with or without a disability to get or retain a job--particularly one offering health coverage. So, a person with a disability would be well advised to maintain individual insurance in case of such a situation. This is difficult to obtain and maintain. Insurance companies are prejudiced against people with disabilities as a bad risk. It is difficult to get adequate coverage for a reasonable price. Often, they refuse to cover some things or charge a high premium.
HMO's present an added problem. Since obtaining employment, I have participated in a group HMO plan rather than the MRMIP as a more fiscally sound alternative. Quickly I found that while more cost effective than maintaining my own insurance, it is still fraught with problems. I am currently embroiled in a situation where I must see a specialist outside my HMO group to take care of a very simple procedure. I need my wisdom teeth extracted. This has been going on for more than a year. Taking care of this through common channels has been fruitless. All the dentists state I need to see a specialist because my facial deformities make extraction difficult and unsafe without the supervision of a highly qualified specialist. At the same time they are either reluctant to refer me or unable to make a recommendation to the appropriate specialist. I did my own research and sought out a highly regarded specialist at UCLA Medical Center. I found him on the recommendation of my former specialists at UCSF Medical Center whom I had seen in my childhood. I went to see him on my own money because I wanted to be sure he was right for me. Satisfied of his expertise, I went to my general practitioner to obtain authorization He informs me the insurance company will not take his authorization. I must see a different kind of specialist within my HMO group—an ENT who has no real expertise in this area, waste my time and the doctor’s—not to mention HMO money—to obtain authorization to eventually see the appropriate specialist. This issue remains unresolved after more than a year. This is indicative of the inefficiency, beaurocracy and waste that characterizes the HMO system. The insurance companies have been unduly prejudiced against people with disabilities for too long. In order to gain the full effect for the various Special Education laws, the ADA and other legislation designed to allow people with disabilities to be effective, productive and equal members of the society at large, I urge you the head a healthcare reform, which guarantees no cost full coverage equally accessible to all people regardless of their disability.
Thank you for taking the time to read my concerns. I hope the information I have given you presents the situation in a new perspective. I hope to see you as a strong voice in insurance and healthcare reform.

An Unusual Review

2009-01-09T15:51:00.000-08:00

I loved the 1985 movie MASK directed by Peter Bogdonavich with Cher, Eric Stoltz and Laura Dern. In March of 2008, Pasadena Playhouse premiered MASK: the Musical. Same story but this time directed for the stage by Richard Maltby Jr. with Michelle Duffy, Allen E. Read and Sara Glendening in the most recognizable roles. Being in the Los Angeles area, there are plenty of people who could write a review about the play citing acting quality, direction, staging etc. to determine if the play is artistically and professionally any good. What I would like to do is take you through the story line and show you what makes this play, like the movie, significant and impressive for the real life story it tells.

The story line (written by Anna Hamilton Phelan) is about Rocky Dennis, a boy affected by craniodiaphyseal dyplasia or lionitis. The condition affects his facial bone growth causing his features to grow farther apart, flatten and harden. The play portrays the good and bad moments of his real life while brining up issues and situations that many people with disabilities universally encounter. The universality of the experiences and issues Rocky experienced is what makes this play a strong one.

Right off the bat at the beginning of the play you are introduced to The Clan. On the surface they are a bunch of biker friends Rocky and his mother hang out with. They also represent the foundation for Rocky’s self-acceptance and positive self-esteem. People with disabilities on a near daily basis will encounter prejudice, ill-will and ignorance. Especially while young, people with disabilities encounter these situations alone—that is with no frame of reference garnered from others with similar life experiences. That can erode anyone’s self-esteem. Despite changing homes and school due to his mother’s employment and financial instability, Rocky was able to maintain a healthy self-confidence. I attribute that to the consistent presence of The Clan. The Clan as I see it, is a mini-society with people who are exactly who they are. They aren’t threatened or intimidated by Rocky’s differences. They were able to respond to Rocky appropriately—as one of them. Well adjusted people with disabilities have a community where they are accepted for whom they are while also being treated as an equal. That community can be as small as a nuclear family and as large as an international advocacy group.

Almost immediately the play sets up the next experience common to many people with disabilities—the doctor visit. No one likes going to the doctor and growing up with frequent visits can be discouraging to most people. In the play, Rocky had forged a personal relationship with his regular doctors. The relationship allowed them to talk as friends. The doctors asked questions about school and family and Rocky responded openly, even jokingly People whose disabilities require significant medical attention deal with it best by acquiring doctors who are experienced and knowledgeable in their treatment and who they like on a personal level. Over the years, these doctors will essentially become their medical “family”. This family feeling fostered by Rocky’s relationship with his doctors is a great buffer and contrast to his next encounter with the new doctor.

As is the case with new doctors encountering someone with a disability, this new doctor referred to Rocky as a patient and a condition. He never referred to him by name and never directly spoke to Rocky unless Rocky insisted. This experience was common during the time the play was set.

This unknown doctor brings on another universal concept experienced by many people with disabilities—the prognosis. The prognosis scene illustrates another reason Rocky was such a well adjusted person with a disability. In the scene, his mother included Rocky in the news. This gave him empowerment over his disability. In the scene she also categorically refutes the dire news as having been said before many times which never bore fruit. She also says something which drives her attitude toward bringing up Rocky. Had they both dwelled on these “expert” prognoses at any time, Rocky would have been long dead. Instead, they have focused on living their life fully and with focus. This attitude drives many well-adjusted and successful people with disabilities. Living in the moment is very important when you have a disability. One moment you are going about your life, the next you are inconveniently in the doctor’s office for an appointment or in the hospital for a procedure. In order to maintain an active life, focus must be paid on the life you have, not the disability.

Rocky’s focus on living his life and strong support from his mother and the Clan give him the foundation to confront uncomfortable and unnerving encounters with uneducated strangers. His school was both institutionally and socially loathe to accept him on equal terms. The scene in which Rocky and his mother introduce themselves to the principal is straight and to the point. The principal immediately assumes Rocky’s incompetence for General Education and tries to assume expertise in Rocky’s needs. Rusty, immediately simplifies the situation for him and rhetorically asks something along the lines of “do you teach algebra, history and English?” Of course the principal says yes. To his astonishment, Rusty asserts “those are his needs.” All too often education experts purport to know a person’s needs based on their perceived disability—never mind their own inexperience with the disability. What Rusty did was to claim the expertise for her and her son based on experience—which in many ways trumps all formal education.

Rocky had a less direct but equally compelling way to renounce ignorance among his peers in social situations. He used humour to gain attention. But once he got their attention he didn’t stop there. He offered to show what he knew—both academically and socially. He did this in a non threatening manner which simply showed who he was. He did not have expectations for how they would react—though of course he hoped it would be favorable. Again, Rocky had the acceptance of the Clan and his mother—he didn’t need other people’s acceptance. This is why he was able to offer his friendship freely. Successful people with disabilities assert their needs and present their strengths independently as a fact—not as an excuse or source of pity or admiration. Well-adjusted people with disabilities—like any other well adjusted person—offer themselves without apology and leave it at that. People responded positively to Rocky because he wasn’t needy and he wasn’t aggressive.

While Rocky wasn’t needy—he did have needs just like anyone else. This was effectively confronted in the sequence between Rocky and Rusty about girls. I think this is a particularly stressful subject for the parent of a child with a disability. Every parent wants their child to find a special person—Rusty is no exception. She tries to evade the issue though by first telling him what she finds cute about him. She then does a well meaning but potentially very embarrassing thing—hires Rocky a prostitute. The scene brings up the issue of romance and intimate relationships for people with disabilities. That sequence in and of itself resolves nothing really. Except in that time period, romance for people with disabilities was just beginning to be addressed so Rocky and Rusty had little to draw upon to resolve the issue. Now, it is a more talked about issue and more people with disabilities are taking ownership of their sexuality and interpersonal relationships. They are asserting that they have the same feelings and needs as anyone and want the same thing as we all do.

The play’s sequence goes smoothly to Rocky meeting his first love. I have no idea if this romance sequence is factually true. I’m inclined to think it is not. But that is not the point. The sequence brings up in a romanticized fashion some issues a person with a disability faces when entering into a romantic relationship. Rocky, like most people with a disability is apprehensive as to how his love interest will take it. This visits his fears in the previous sequence that he tried to discuss with his mom. Would anyone love him with his disability? The in the play and the movie Phelan takes the easy or at least metaphorical way out of the issue by making Rocky’s love interest blind. She is able to get to know Rocky first for who he is. Only later in the relationship does she “see” his physical attributes. For the time period it is set in this is an extraordinary way for someone with a physically visible difference to get another person to look beyond their disability. That’s why the screenwriter took creative liberties and made Rocky’s love interest blind. In this day and age with the internet and internet dating becoming less and less taboo, people with a physical difference have the opportunity to present themselves to a potential love interest before their disability. The play does a smooth job to present the situation to its predictable end. Diana falls in love with Rocky for who he is and when she is presented with what he looks like, she is not dissuaded.

The meeting of Rocky with Diana’s parents presents the other side of establishing a romantic relationship with another person—how others will perceive you. Diana’s parents are also understandably protective of their daughter. They are put off by his disability. Instead of getting to know Rocky, they try to get themselves and Diana away. Rocky is understandably put off by their reaction but, as time goes by, he responds like the assertive individual he is. He accepts the situation for what it is, values it, and moves on. In the life of a person with a disability, this is a real situation they must handle. Finding a special person is half the task. You (and your love interest) must educate those closest to each of you who have questions about the disability or the feasibility of engaging in a relationship with a person with a disability. Usually, this situation calls for being assertive and upfront because many people will react like Diana’s parents and either refuse to acknowledge their concerns or try to remove themselves or their loved one from the relationship. If nothing else, that will not be healthy for the primary relationship. In any case, Rocky’s support system—The Clan--come to his aide again. He is still accepted unconditionally by them and they still include him in important events and rites of passage like a bike trip to Sturges, North Dakota for the annual motorcycle rally. In any case, the movie and play end essentially the same way with Rocky dying before that rite of passage is reached. His family—his mom and The Clan still remember him.

This play debuted in Los Angeles and Allen E. Read received an Ovation award nomination for his portrayal of Rocky. It is my hope that this play makes it to Broadway. This play can speak to anyone about their own lives as long as you can be like Rusty, The Clan and Diana and look past the “Mask”. This play brings up so many universal issues and attempts to blur cultural lines. Whether you are disabled or nondisabled these issues can be found in your life. That’s why I believe in the play and its underlying message of equality. Rocky Dennis “lived every second of his life” as his mother put it in an interview. That’s what we all should do.

The Children of Edgewood

2008-04-20T22:15:00.000-07:00

On March 8, 2008, The Drkrm Gallery in Los Angeles opened a new photography exhibit by Ryan Herz. The Children of Edgewood is a series of photographs taken of children and adults with a variety of developmental disabilities in 1976. This was before many laws governing the education and employment of people with disabilities broke new ground, and a time when institutionalization was one of the few options available. If the artist’s purpose was to represent the isolation and objectification of his subjects—so common an ideal for that time—then he succeeded. What I suspect he didn’t bargain for was that his exhibit would represent how little has changed in 31 years.

The pictures are very professional. They are clear, focused and the artist makes good use of light and shadow. All but a handful of the portraits show the main subject—a child or adult with a visible physical or mental disability—in isolation. One of the most poignant photographs is of a girl sitting in a hospital bed from a distance. She is facing away from the photographer and gazing out a window to a nondescript landscape. I sensed feelings of helplessness and hopelessness as well as isolation and disconnection on the part of the subject. I interpreted the gaze out the window as a longing to be part of the outside—which is out of her reach. The artist chose to represent his subject in an objectified way. There is no personalization of the girl. Her likes and dislikes, abilities and inabilities remain unknown. Her individuality is still a mystery. This leaves the viewer with only one reaction—pity.

The emotional reaction of pity is a one dimensional feeling that sees the disabled as helpless victims.. Pity was more excusable as an emotion felt towards people with disabilities in 1976 than in 2008. That is what these solitary portraits promote. The novice viewer wonders what choices these subjects had in being photographed and what they were feeling. They may even wonder beyond the portraits and wonder about their lives. What kind of choices did they have? Did they have any other choices? A more empowering, modern portrait would show these subjects demonstrating their capaibilities and their connection to the world around them, instead of disconnected and alone.
This different approach would elicite a response from the viewer that would not have objectified the subject, but rather personified the person. It would a provoke a genuine interest from to the viewer to see these people for who they are and not what they lack. With a more empowering portrait, the subjects are infused with more depth and breaks free of stereotypes and shallow emotions, such as pity. The questions will run differently though the viewers mind. Questions can be raised about the subject’s work or personal achievements. The viewer can wonder about their opinions or preferences for the mundane things the able bodied take for granted.

I’m not suggesting we depict the disabled on a pedestal. Rather, I encourage artists and lay persons to view the disabiled based on their abilities. Disability empowerment is a little known concept to most people—with or without disabilities. The artist chose to objectify his subjects by painting a victimized view of disability in his selection of prints and his choice of a unacccessible gallery, the Drkrm Gallery in Los Angeles. When I went there, I encountered stairs leading into the building. I did not see any obvious accessible routes to accommodate wheelchair users or others for whom stairs promote inaccessibility. It was telling that during the time I spent at the Gallery, I did not observe anyone an obvious disability. This leads me to wonder, did the artist consider people with disabilities as viewers and consumers of his art or just as annoymous subjects? Wasn’t an audience of people with disabilities an obvious audience to tap into? I wonder if the artist or his managers thought to contact groups or organizations of people with disabilities who would have had an ingrained interest in this subject. Finally, what tells me that the artist was leaning towards a more dated (1973), disabled person as a victim, mentality is in the description of the exhibit on the Drkrm Gallery website:
"They are extraordinary pictures, almost like classical fashion photographs. The photographer so humanizes their pain."
"Disturbing, haunting, beautiful and ugly. One can't take your eyes off the subjects. It's like he captured their souls in tortured pose."
Use of semantics is very powerful when influencing people’s views. The ambiguous portraits, people’s limited understanding of the experience of a person with a disability and the words used in these statements, all create a portrait of the disabled as a poor, suffering victim and freak. Are we equating the disabled with Quasimodo? The portraits may be from the past, but the written text is contemporary. Another statement on the website leads me to believe that the artist has a dated view of people with disabilityies:
A portion of all sales will benefit The UCLA Foundation Medical Genetics Division
Not to say that genetics research has no place in disability empowerment---properly used, it does. This above statement views disabilities from a medical perspective, in which a disability is something to be “cured,” instead of one’s way of life. A more empowering gesture from the artist would be to offer some of the proceeds to the Center for Independent Living, for example. Finally, the cost of the portraits, upwards of $1000, makes the prints cost prohibitive to the majority of the population it directly addresses.

The exhibit would have been more compelling and intresting if (Artist’s Name) had revisited this world and created modern portraits displayed along side those he took 31 years ago. He would have discovered how people with disabilities are equal participants in their communities. Thus would have created a proud image of how far disability empowerment has come in the intervening years. Of course, I would hope the exhibit would be in a gallery that is accessible to all—both physically and financially. But please, see the exhibit for yourself online or in person, I welcome to hear different perspectives.

http://www.drkrm.com/edgewood.html#statement

drkrm. gallery • 2121 San Fernando Road Suite 3 • Los Angeles CA 90065 323.223.6867 www.drkrm.com drkrmgallery@gmail.comHours Tuesday-Saturday 11am-5pm Sunday 1pm - 4pm and by appointmentAll gallery events are free and open to the public.

One size fits all

2007-11-11T21:54:00.001-08:00

One of the reasons I became a Special Education teacher is that I thought I could tailor my students education to their specific needs. I felt that was ideal for any child but in Special Ed. I actually was given permission to do so. I believed in giving my students a good education with opportunities for them participate with their general education peers when appropriate. Afterall, I had been mainstreamed myself--so I knew given the right circumstances it could work. I never believed in standardized testing for general education or special education students. That's a subject for another blog. The point is, I liked SPED because it gave me the chance to opt my students out of standardized tests.

Then NCLB happened. On top of that, the consent decree specific to my district. This all happened not even 5 years into my becoming a teacher. All of a sudden, I was required to teach grade level standards to students 2 or more years behind in their education regardless of their readiness for grade level work and completely disregarding the fact that they may have just been placed in SPED because they had been failing for years already. Also, in order to give my students "equal access" to grade level work by mainstreaming them even if they really were not ready emotionall, behaviorally or academically. I sincerely believe in mainstreaming--I do. But it should be at the discretion of the ones who know the student best--the teachers and parents. It should not come as a blanket statement form a faceless government who does not know the face of my students. In order to pacify those who oppose this concept f indiscriminate mainstreaming, I have been given a directive that it is alright to write individual goals that don't reflect mastery of grade level concpts. Essentially giving my students permission to fail. Before they were placed in SPED it was unacceptable that they fail. This is supposed to assuage the teachers who are forced to educate in ways not beneficial to the student, the parents and students. But what student wants to fail? What parent wants to see their child fail? What teacher wants to give a student an education full of the wrong tools? Permission or not?

This is an attempt at one size fits all education. The standardized tests are the epitome of one size fits all education. All students in a particular state are to achieve mastery of state standards for their grade level by the end of an academic year. Disregarding obstacles from language barriers to socio-ecomomic barriers and disability. I'm not saying these standards are not achieveable--eventually. My problem with it is mainly the timeline. They make good developmental sense. Adding is a precursor to multiplication so you need to master that before you move on the multiplication. But the time constraint is arbitrary. Put in place so we can process the kids through an assembly line. A child who hasn't learned to add by end of second grade will have that reflected in his standardized test and will not get the same indepth teaching of the concept in third or fourth grade no matter how much the teacher scaffolds. Standardized tests are not measuring real time learning. If you look into the history of standardized teasting in this country there has never been an era in which children achieved satisfactorily in these tests. Yet NCLB states all children must pass these tests in the near future--regardless of barriers. That directive is written with the same thinking as the people who write the tests. They are completely out of tune with the real time needs of children besides an adequate education. Special education studentsmust take these thest that even general ed. students have difficulty passing. A fourth grade tests does not adequately measure the skill of a student working on her alphabet--despite the progress she has made. So she will forever have "failed"the test. If children must take a test by the end of the year, let it be written by the teachers. Let students opt out--really. We can allow students to opt out but if too many do so, the schools lose money--a catch 22 that no one wins. So where is the choice? Where is the attention to the individual? Welcome to assembly line education. Henry Ford would be proud.