Required Reading

August 19, 2010

Friends and co-advocates often send me articles and news clips on various disability-related subjects. They are always interesting and worth reading. Unfortunately, I rarely have the time to read them all. So, when they arrive in my email, I drag them into a folder for when I have a few spare minutes. This morning I read a wonderful commencement address to new doctors graduating from Yale Medical School. The speech was given by a doctor and father of one of the graduates. Please take the time to read it yourselves; it should be required reading for every doctor, new and old, out there.

It should also be required reading for every bureaucrat and decision maker in the halls of Washington and our state capitals, who makes arbitrary, system-based decisions that adversely affect the lives of so many people. How many times have we heard – “It’s our policy”, “It’s the rule”, “That’s just the way it’s done.” How many times have those rules and policies been written based on isolated problems rather than the best interest of the majority? How often do the rules and policies result in placing more burdens on people than relieving the ones they carry?

For example:
  • Recently, a seventeen page, non-person centered document was added to the current multi-page ( in Lauren’s case forty-nine page) “plan” that is developed for each person in self-direction. Why?...because an individual in self-direction died when they did not receive appropriate care. So, what is done? They add the burden of more paperwork to all of the other individuals in self-direction. Does the new document add any information to the original plan? No. Would it have prevented this death? Probably not, because if this person had been receiving appropriate support – from the state – this would not have happened. It had nothing to do with paperwork.
  • Medicaid has just issued the announcement that if you receive diapers through them, they will now require you to submit a prescription and supporting documentation every six months. Who comes up with these things? So, some computer somewhere is going to deny someone diapers unless a piece of paper is submitted and, hopefully, processed by a federal worker (we’ll probably need to hire more to handle this). One, more thing for the overburdened to do. I just submitted a request to Lauren’s doctor for a prescription for diapers. We waited two weeks.... nothing. On calling the office, they said they never received the fax. So, I had to re-fax the request and now we are once again, waiting. Should people who provide care to individuals who require diapers be burdened with this additional requirement?
  • With funding limitations and freezes on development of infrastructure, pretty much the only way for individuals with developmental disabilities to obtain residential services right now is to ask for emergency placement. Now, to me the word “emergency” connotes a need for immediate action to alleviate some type of urgent problem. Currently, the average request for emergency placement in New Jersey takes an entire year to process. An entire year....who has the audacity to call that emergency placement?
It's all such a ridiculous, destructive, waste of time that could be put to such better use actually solving problems instead of making more.

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