Wednesday, March 2, 2011

Denial by cookie cutter

When you make a cookie with a cookie cutter you spread your dough out flat then place the cutter shape and press firmly down. You them remove the excess dough from around the cookie cutter leaving only the cut shape. You are discarding the left over dough for it is not necessary to create the desired shape. Now think of this process again, except the dough represents a child, the cutter shape the portion that the bureaucracy – or bureaucrazy as I call them – wants to look at. They make their shape and discard the rest of the child for consideration. I call this the cookie cutter effect.

I despise this widely used concept among complex medical needs children. If your child has a rare disease or set of complexities, like Elias they only matter if they fit that shape. Otherwise they are not even considered – they are discarded and not part of the picture. It is very frustrating. Tonight we were again victim of the cookie cutter effect. We were denied the opportunity for an intensive level evaluation that is medical team and therapist, lead by his developmental pediatrician have highly recommended. Ironically, his lead doctor in this area is one of the few that perform these for the state, so she is very in tune with the advantages, values, and necessities this presents. Yet her expertise was never regarded – not her fault. The bureaucraps bureaucrats are only looking at a freaking piece of paper & relying on notes. He is a little boy you idiots, look at him not the stupid file! One of the main reasons for the denial was unknowledgeable coordinators, poor timing with legislative “emergency regulations” and following the poor advice of those put in place to lead us through this failed system. We learned today that the timeline for submission of time sensitive material was compromised and we were deceived into believing that everything was on target. That gave them their 1st out – too close to his 3rd birthday with insufficient time to implement any gains from the evaluation. That is all administrative foul ups and can potentially be fought. However, the clincher was the fact that none of his providers (therapist mainly) noted any challenges relating to meeting his goals. Mainly in the speech and communication department. Everyone is scratching their head trying to figure out how to get him to use a communication book….HELLO that is challenge no one at 3 agencies can figure out. As we were told today, “There is a learning curve to this new process and providers are going to have to be more accurate in documentation.” Great so Elias is victim to a “learning curve” because you bureaucrats can not figure your head from your ass nevermind. These are real children that are affected by you taking your sweet time learning. They read his limited response to sound and cited that as improvement that contradicts a need for evaluation.

Early Intervention is designed to help the family build a foundation that puts the child on a path to succeed. In Elias’ case many approaches have been attempted but there has been limited success. A focused and centralized approach is necessary among the disciplines. It would have given information towards us having more effective use of the 58 days we have left and provide a roadmap for success. But Elias didn’t fit the cookie cutter well enough to be approved. The system lacked clarity and transparency along with the coordinator’s breeching the integrity with untimely submissions. Elias has never been at a medically stable point to attempt this before now. He has spent half his life in a hospital bed for God’s sake. On May 1 he turns 3 and is ineligible for service. He will have only received 17 out of 36 months of what the system defines as “valuable intervention.” That is less than half! In his most needed area, speech, he will only have benefited from 10 total months, because in Maryland they said it was not age appropriate. Another false leading!So because he has a disease and medical complexities that force him in and out of a hospital he is punished by taking the time away. How is this an effective model for complex medical needs children? You could at least offer this final opportunity to gain some insight. These bureaucrats never saw Elias as a child, just as somewhere to cut. They never looked at the whole picture including the number of months he spent in a hospital or how many surgeries. For a program that is designed to protect the interest of those with disabilities and provide a stronger foundation to help offset future education costs, for Elias early intervention has been a failure. Based on all the “scoring” Elias is only at a 12-14 month developmental stage. We know he is capable of more but that is the system they use to grade. He is barely at 1/3 his age level according to this, yet you deny? Ignorance!

It is a shame the therapist that help Elias are forced to deal with such inconsistency. I suppose it is a hazard of the career choice. No weight is even given from them outside of the basic documentation, which they obviously have not been given clear guidance to effectively provide the type of information these cookie maker bureaucrats want. We began this process December 29th and have jumped through hoop after hoop, busted through red tape and hurdles. We have stressed over this and hounded those responsible for submissions. It almost felt as thought they were stalling. All for a denial, it is a tough advocacy loss after a long fight.

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