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Posts Tagged ‘guardianship’

Recovering from a series of seizures

Dear Dr. _________,

I am writing as a follow-up to our ER visit on Saturday. I am certain that you will remember me, the guardian who fired you from treating my brother. I wanted to take a minute and explain to you why I asked you to step aside and why another physician was needed in your place.

  1. You made a recommendation for medical care for my brother without assessing him. You did not even take 5 seconds to step in and say hello and yet, somehow you think your pedigree gives you the right to treat him, sight unseen.
  2. You made a recommendation for an invasive medical treatment without cause. Sure, go ahead and restrain my brother to the bed so that you can put an IV in him. I’ll just step aside and allow you and your staff to recklessly provide treatment that is not medically necessary. Your “little” hospital makes a profit off that IV doesn’t it? Your “little” hospital does not make any money off my brother when he is taking up a bed for observation does it?
  3. You had the audacity to ask where “his mother” was! How dare you? You do not know the first thing about him or his situation. If you had taken the time to even glance at his file, you would have seen that he was there with his sister and guardian–the person who has provided care for him for the past 20 years. That should have been a hint that his mother was not in the picture. Did it ever occur to you that his mother might have passed away at some point in his life? He is 33 after all. As humans age, the likelihood that our parents pass away increases. How cold and inconsiderate of you to ask such a question!
  4. How many grand mal seizures have you seen? Let’s be honest. You are, at best, 28 years old. I’m pretty sure you didn’t see any seizures in medical school, maybe 1 or 2 in your residency, maybe 1 or 2 more in your time in the ER. I’ll give you 5 and I think that is generous. How many of my brother’s seizures have you seen? Zero. That’s right–none. If you learned anything in medical school, it should have been that no two people have the same type of seizures. So don’t go taking your very minor seizure experience and try to act like you know anything about my brother’s seizures. By the way, I’ve been a witness and first responder to my brother for about 5 seizures per year. You do the math. I’m pretty certain that I know more than you do when it comes to his seizures.
  5. Before you go talking down your nose to me, you should know that I am not some uneducated homeless person off the street. I realize that at your fancy “little” hospital, most of your patients are homeless, uninsured, do not speak English as a first language, or are drunk/strung out on drugs. What you don’t know is that I have a doctorate myself. That degree came from a major Research-I institution (top 5 in my field if you want to get specific about it). Oh, and I have a master’s degree too–from an Ivy League school very similar to the one where you work now. So please, do not patronize me.
  6. Finally, I will remind you that you took the Hippocratic Oath at some point in your career. You remember it, don’t you? I especially want to highlight the parts about over-treatment and the importance of warmth and sympathy. I’m including a copy so you can review it in its entirety.

I hope that you learned something from your experience with my brother and me. You need to treat your patients and their family members with respect and care. Contrary to what you may have been taught in medical school, you do not know everything. You are not even close. Maybe after a few more years of experience, you will learn that. Or maybe you won’t.

Sincerely,

Missy (the sister, guardian, and eternal advocate for my brother)

Hippocratic Oath (Modern Version via Wikipedia)

I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of over-treatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.

I will not be ashamed to say “I know not”, nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, be respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

We are linking up again with Erica over at Yeah Write. Hop on over there and check out all the other blogs. Go back on Thursday to vote on your favorites!

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Hi and welcome to Ask Missy Mondays where I respond to email questions from readers who have questions about behavior. Today’s question comes from a list serve on which I participate. The list serve is reserved to parents and guardians of individuals on the autism spectrum. The question actually came about because a reader posted a link to a great story about an adult with disabilities and the lack of resources available for adults once they age out of the school system. You can read the article here.

When people read the article, they became alarmed as they thought about “what would happen to their child with disabilities if/when something happened to them”, the parents/guardians. The sad reality is that our systems are not currently set up to properly care for our loved ones. I know this first hand, as my brother has been in the adult system for 13 years now.

  • housing choices are limited
  • 24-hour staffing is expensive
  • community support staff are underpaid
  • community support staff lack training
  • funds do not exist within state budgets to care for all of those individuals who are going to enter the adult services system

So, what will happen to your loved one when you are gone? I will tell you what we have experienced first-hand: Abuse and Neglect. My brother experienced both of these and I am still around to advocate on his behalf. I never go more than 2 weeks without seeing him. Yet, he still suffered from abuse (broken bones) and neglect (malnutrition and dehydration) on more than one occasion. The details of those stories are for another day (and I book that I am working on). So what do I advise you to do? Start. Planning. NOW.

Guardianship

  1. Follow all the steps to make sure that you have appropriate guardianship/conservatorship as soon as your loved one turns 18.
  2. Make sure that you have a guardian lined up who will take over the duties when you are gone. It will be best to have someone who can start sharing some responsibility now so that the change will not be such a shock.
  3. Guardianship, at this time, does not transfer across states. We learned the hard way. If you are planning on relocating to another state, find out what steps are necessary and get it taken care of as soon as you have relocated.

Housing

  1. It is not normal for your loved one to live with you beyond age 18. Begin searching for appropriate housing options. It can take years to find the right place.
  2. A variety of housing options exist. Choose one that is right for you and your loved one.
  3. You will find it important for your loved one to live near you. Frequent and unplanned visitations are important

Adult Services

  1. Most states have long waiting lists for adults with disabilities. My brother waited for 9 years in Texas before receiving appropriate services. Get on the list today. If you do nothing else for your loved one, register them with the state today.
  2. Be honest about what your loved one needs. We all want to find the positives in our loved ones. However, your loved one will get more services based on his/her deficits. Do not sing his/her praises during the evaluation. Be honest about all the things and types of supports your loved one needs.

Adaptive and Self-Help Skills

  1. Begin teaching your child how to be as independent as possible.
  2. Make sure that the IEP focuses on functional skills. Remember, functional skills are those skills that if an individual cannot do the skill himself, someone else must do it for him.
  3. Refrain from doing things for your loved one. Instead, help them do things. Just last night my brother helped start the fire. He brought the wood in and he opened the glass doors for the fireplace. Every little step counts.

This is a scary and thought-provoking post. I assure you, it is better to think about it now while you are still healthy and able to plan and prepare. We would love to hear from readers who have already begun the planning process. Share your ideas with us!

If you have questions about behavior, email Missy at askmissy at appliedbehavioralstrategies dot com.

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