Discrimination in the ER

Healthcare disparity is a critical issue for those who live with an intellectual disability.  Luckily my son with an intellectual disability does have a primary care physician but there have been times when we have had to use the local ER for treatments.  I have had major concerns with the knowledge base and assessment skills of the ER physicians the last two times we have had to utilize these services.

My son had an injury which appeared to be a broken bone in his foot.  He does not complain of pain but knew something was wrong – it didn’t stop him from walking and jumping as usual though but the swelling and bruising was increasing and causing me concern.

In the ER my son was causing a commotion – getting agitated and screaming – calling out to anyone who passed the door or window “x-ray now” –  the staff closed the door to our room but a few minutes later the nurse came in and said that they had ordered some medication for him.  I asked what it was and I was told ibuprofen and Ativan.  (Ativan (Lorazepam) is a benzodiazepine used for anxiety) The dose of Ativan was a large dose.  I refused this knowing that it has caused increased agitation in the past but said he would take the ibuprofen (although he wasn’t complaining of pain.).

The nurse seemed questioning of my response and said that he would need to stay still for the x-ray.  I told her that he would have no problem staying still and the reason he was agitated was because he wanted to have the x-ray and get out of there – he had other plans and the longer he was in the ER the chance of him missing out on his other plans increased.  That’s what all the commotion was about – not the fact that he was in pain.

She left but the doctor came in and said “he needs to have Percocet to calm down – he is bothering the other patients”

This I could not believe – why was he saying that my son needed to take Percocet because others were being bothered?  Is that a medical reason to medicate someone needlessly? Plus giving my son a narcotic would increase his fall risk  – he lacks the understanding to stay off his foot and to be careful – it would not be wise to medicate him needlessly.

I was in the middle of declining this when the X-ray tech came in the room and was ready to take my son.  My son immediately calmed down and was a perfect angel for the x-ray.  Once this was done the commotion stopped and they realized the sooner they got him taken care of and out of there the better for everyone.

Yes, he did have a broken bone, a boot was applied and we were out of there – He did not receive the Ativan or Percocet but only because I was there to advocate for him.

The other situation was at the same ER.  My son had a fever and was difficult to rouse, lethargic and unable to stand due to weakness.  He had had some upper respiratory symptoms previous to this spike in fever.

The assessment started with a lab draw and they also did a Valproic Acid level (one of his routine medications).  Unfortunately the Valproic Acid level was the first lab result obtained and it was high. The doctor told me the reason my son was lethargic was because his Valproic Acid level was high.  I tried to explain that it was high because he had had his dose just 2 hours prior to the test and the test was not accurate.  I could not convince the doctor that this WAS NOT the issue that was causing lethargy.

The doctor did not even listen to my son’s lungs or look at the rest of the tests (they clearly indicated there was an infection) because his mind was made up the reason for the lethargy was an elevated Valproic Acid. Below are the discharge instructions my son received for this ER visit – totally not appropriate for his real diagnosis.

SPECIAL INSTRUCTIONS

hold valproate for one day and then talk with your PMD to reduce the daily dosing

MEDICAL INSTRUCTIONS

MEDICATION REACTION, OTHER

DRUG REACTION (Other type)

You are having a reaction to a drug you have taken. This can cause a variety of symptoms including dizziness, headache, rash, nausea, vomiting, stomach pain, diarrhea, constipation, trouble breathing, high or low blood pressure, and others.

In most cases, the reaction goes away within 1—12 hours. However, it will probably occur again if you take this same medicine. Your doctor will advise you whether to switch to another type of medicine or discontinue

treatment.

HOME CARE:

l) Other medicine may be advised to reduce your symptoms until the drug effect wears Off. Follow your doctors advice on this.

2) Once the reaction has gone away, there should be no further problem as long as you don’t take the same drug again.

I did follow up with the Medical Team at the Hospital regarding this mis-diagnosis and my impression that they just didn’t care.  They saw a person coming in who had an intellectual disability and assumed something that wasn’t.  

Also, I did not hold his Valproic Acid that evening and his level was perfect the next morning (as I knew it would be since that was not the problem!)

This is extremely concerning to me and indicates the need for training of for medical professionals and advocates so that people with intellectual disabilities receive health care that is up to the standard of care for every other person.  People with intellectual disabilities have all the same illnesses and injuries that everyone else has and need to be treated appropriately for their symptoms – not treated on assumptions or what others may need.

 

Vanderbilt  Kennedy Center for Excellence in Developmental Disabilities has published an extensive resource to help healthcare providers with training and resources.

Toolkit for Primary Care Providers

 

 

Life Long Learning

I have been involved in networking with families and support groups for life long learning programs.  These programs are intended to keep people active, engaged and involved in the community, focusing on activities which are meaningful for the person involved.  This is not job training and finding a job is not the goal of this type of program.  The goal is for the person involved to build relationships and participate in meaningful activities which are based on that person’s interests and desires.

By focusing on life long learning and engaging the person with their interests, we are experiencing true integration and inclusion.

The Building Blocks of Life Long Learning

How to Provide for Community Integration

Supported employment is becoming the only program that will be available for people with intellectual disabilities after the age of 21.  This program is replacing the sheltered workshops and in so doing is eliminating a very important part of many people’s lives. Please do not misunderstand the issue that I am trying to convey – read the story before making comments.

While supported employment is also a needed and critical program, it does not best serve the needs of many of our loved ones – particularly those with a dual diagnosis of Intellectual disability and mental illness of mania, psychosis or schizophrenia.  The population with a dual diagnosis is in need of a program which provides a stable setting every day of the week for several hours.  They do not do well in settings in which they only have support a few hours a week and then are left to their own devices to manage the rest of their time.

As a parent of one of these people with a dual diagnosis, I know that the supported employment program will not be the program that serves his needs.  There are so many opportunities to include him in community activities in other programs but if all the funds are used in the supported employment programs, there will be nothing left for those who need another type of program to function optimally.

I was recently at a local meeting area which has several eateries which serve a commons.  I witnessed a young man who was being supported by a “coach” in his job.  He clearly had no interest in the job, was spinning around, looking at the ceiling, while the coach would take a tea bag, put it in his hand and then he would drop it in the correct bin.  The coach was attempting much hand-over-hand work with him but it really was her doing the work.  She then picked up the bin of dirty dishes; put it on the push cart and then they both pushed the cart out of the commons.

This scenario made me feel really sad.  If a person has only so much support to enable them to be out in the community and experience life, I would much rather have my son experiencing opportunities that he enjoys and which get him out with people in a more natural way.  These activities are going grocery shopping, going to the library, going to a restaurant, walking to the park, going to church – these are all normal activities which he greatly enjoys and interacts with all types of people.  These are activities which he needs a 1:1 support person to help him.

Other activities that my son greatly enjoys are meeting with people and being in groups.  This is what the “sheltered workshop” provides for him.  No, he doesn’t do much work there and it’s not training him for a future job but it does provide stability, group activities which he craves, interaction with people, and structure to his day.  These are all critical components to his care which will be gone if the sheltered workshop is closed.  The sheltered workshop is not a sweat shop nor is it slave labor.  He does learn skills and is capable of some work with 1:1 support at all times. He gets paid for the piece work that he is able to accomplish but that is definitely not his motivation since he does not understand the economics of having a job and supporting himself.

If my son was only allowed 5 hours a week of a support person, it would be much more beneficial to him to use that for activities which he enjoys and activities which he chooses rather than a type of “employment” that means nothing to him and is only there to make others feel good that they are accomplishing something.  This type of “employment” would be torture for my son.

My son and many like him are not going to be cured and will not be “getting better”.  Yes, they are able to learn but will always need a high level of support.  They are not people who can be taught a skill and then be sent off independently to do that skill.  Even when they know how to do something, they need the constant support to maintain focus and follow through.

People like my son are very much like people with Alzheimer’s disease.  A similar condition is dementia.  Dementia, which my son has, is a brain disorder which obstructs and diminishes cognitive performance such as memory, judgment, personality and social function.  We need to be realistic in the choices that we make with services.