I saw this on a friends facebook page today. She lives in Colorado, but it seems that these school situations are happening everywhere. I could not believe how the incident and the responses echoed some of the experiences in Braden's school.

From Tracey McGinnis:This is my 7 year old son. He came home from his special needs school Monday May 21, 2012 nearly strangling to death by the butterfly harness on his wheelchair because someone either at the school or on the bus put it on very incorrectly. He was struggling to breath, turning blue, and had petecheia on his face from the strain. He is severely disabled, nonverbal, medically fragile. He had to have a CT scan the following day due to swallowing issues and has been in pain the past few days. The police are investigating the matter but the detective told me yesterday that I should prepare myself for nothing to happen, no criminal charges to be filed, no personnel to lose their job. Yet, he admits that 10 more minutes and my son would probably have died! I am beside myself with all of this. I nearly lost my precious boy due to someones careless and very dangerous mistake (that is assuming it was not intentional). Isn't this neglect? Child endangerment? What would you do? Any suggestions? Any advice to help this matter see the justice deserved? Thank you.

Brendan's neck after almost strangling due to improper placement of HIS wheelchair straps by a classroom aid.

This is the Butterfly Harness as it should be positioned. The "U" was tightened around his neck when he arrived home from school.

This is a link to the site that explains Brendan's condition.

                                                       http://www.cmvfoundation.org
May 22, 2012- Well, finally home after a long day at the Children's hospital. Brendan is now resting and the ibuprofen seems to be helping his pain. I spoke to the police officer who took my report today. He interviewed everyone at the school who worked with Brendan yesterday. It was a para (classroom aid) that last put him in his wheelchair and got him on the bus. She told the police that he was buckled in properly. Obviously he was NOT! So, it now goes to a detective with the crimes against children unit. I am just waiting to hear from them. I don't know how they will get to the truth of this terrible situation when everyone at the school is saying everything was done correctly, but they have to! This cannot be just left to go unanswered and the responsible party needs to be held accountable and punished legally. I am exhausted, but that's kind of par for the course these days.





As of May 23 this is an update: "Still having issues swallowing. The ER doc yesterday said his throat has soft tissue damage so is sore and swollen. He's tired and sleeping more than normally"

  
Thank you Tracy for letting me share this... 
 

 

"Does a student have to get seriously hurt.....?

 Does a student have to get seriously hurt...?

When I asked that question I was very serious, although it was somewhat rhetorical as well. However,in the midst of my issues with the school I discovered that a student in Braden's class HAD, in fact been injured. I had noticed this student was not on the bus for a while, but just assumed it might have been due to medical appointments or something like that. When I heard what had happened I was sick...physically sick. I went to visit this student and when I saw him I burst into tears.This beautiful young man looked like he had gone several rounds with a prize fighter. His face was terribly bruised and swollen and he was missing several of his front teeth.


This boy is blind and confined to a wheelchair. He lives in my neighborhood and takes the same bus as Braden.One day after school he was wheeled out to the bus, as usual, when the CEA accompanying him became distracted, possibly assisting another CEA with another student. When she did this she neglected to put the brakes on his wheelchair. His chair rolled down the sidewalk and flipped over. The student fell face first onto the road, breaking his cheekbone, his nose and knocking out several teeth and skinning his knees.     ( the last part is ironic because this boy has never walked or crawled, this was the first time he had EVER had skinned knees)


The injuries were terrible enough, but the way the situation was handled was even worse. Apparently with blood everywhere and an obvious head/facial injury it was NOT felt necessary to call an ambulance for this student. His mom was called to come and get him. There was no concern about possible internal injuries or brain bleeds or anything else that we might normally be concerned about.It was left to the mother to take him to the hospital.

Apparently this level of injury was not considered ambulance worthy-unless of course it was written into the IEP or Nursing Support Plan that under circumstances like these that ambulances should be called. I was beyond stunned by this fact but in my meeting I had to ensure that "when to call an ambulance" was included in Braden's nursing support plan. I think that parents need to be aware of exactly what protocols are in their child's school and district. Ask questions and be specific! DO NOT ASSUME anything!! Realize that what is common sense to you, may not be to everyone.
  
This beautiful boy recovered from his injuries, however he has lost several front teeth. Many children with disabilities/special needs cannot have any type of cosmetic dentistry done due to the danger of implants etc becoming a choking hazard. So this young boy is now permanently maimed...his appearance forever changed. This is all due to a CEA being careless in their duties and putting students at risk.

I looked at this boy and my concerns about Braden and I seriously wondered if somebody had to die before these people would "get it" 

Of note in this situation, as in the others, is that it does not appear that there was any discipline taken against the person(s) responsible for this incident or the ones involving Braden. Of course, the 'powers that be' cannot even offer parents the reassurance that someone has been held accountable for these actions.

As I have continued to dig I find more and more flaws and loopholes in our school districts. It seems that the system is corroded and that if someone doesn't start speaking up that NOTHING will change. I have NO DOUBT that students will be hurt.

I received this post from Melody Chamberlain who has spent 15 years as a caregiver and 10 years working in the vehicle modification industry. There is a wealth of information here and she has graciously provided her email address for anyone that might want any further information. I would encourage everyone to check out this website and view the crash test videos. I believe these should be mandatory part of training for both bus drivers and any other staff who are securing students in wheelchairs or other mobility aids. Of particular note is the information about the forces involved in a relatively slow one vehicle crash. I have placed the link to the site on the right hand side of this blog.

Melody Chamberlain

Melody.Chamberlain@pgsurgmed.com  

You are right Barbara, it is not rocket science, but there is an awful lot of science that goes into safe transportation.  Most may not know the laws, standards, and best practices that make transportation for those with special needs safer, and fewer still actually practice these concepts on a daily basis.  Not out of lack of care (for the most part - of course there are the rare exceptions), but from lack of knowledge.  I'll try to highlight some of those laws and issues so that others (particularly parents) can be informed.

For School District Transportation in BC, there are three main laws/standards that come into play.  First, Canadian Standards Association (CSA) has two standards that school buses must meet: CSA D-250 and D-409 (D-409 only if the bus is for transportation of "people with physical disabilities" (CSA language not mine).  I won't give a link for D-409 as it is a purchase only site, but if you want to purchase search for CSA, then search for D-409-02.  This standard lays out the requirements that vehicles must meet, including the minimum size for each mobility aid position, the type and location of the MASOR (mobility aid securement and occupant restraint) system and other requirements such as safety and lighting.  It also cross-references to another CSA standard, namely Z605 which lays out the standards the MASOR system must meet to be considered legal and safe for use in Canada.  If the restraint system is not labeled as Z-605 compliant DO NOT USE IT!  It does not meet the safety and testing standards that Canada requires.  It is clear that each mobility aid position must have at a minimum a four-point tie-down system for the mobility aid (usually wheelchair or stroller) and a lap/shoulder belt (occupant restraint) for the person in the mobility aid device.  School buses in BC must comply with these standards, so they must have these systems.  This is mandated by Provincial Law, in the Motor Vehicle Act/Regulations    http://www.bclaws.ca/EPLibraries/bclaws_new/document/LOC/freeside/--%20M%20--/Motor%20Vehicle%20Act%20RSBC%201996%20c.%20318/05_Regulations/28_26_58%20Motor%20Vehicle%20Act%20Regulations/26_58_15.xml#section44.8

A taxi that is being used as a school bus is also legally required to meet these same standards (in other words, they MUST have a MASOR system that meets CSA Z604/605 standards installed) and although taxi drivers are exempt from ambulatory passenger seat belt laws (in general - NOT so when used as a school bus) they are also NOT exempt from this in the case of a wheelchair-seated passenger - they MUST use the complete MASOR system (look at Motor Vehicle Regulation section 44.8 (2)).

Some people do not realize the forces involved in a motor vehicle crash.  The standard for the automobile industry (which has been adopted by the wheelchair industry) for crash testing is 30 MPH/48 KMH.  The deceleration forces in this type of crash (one vehicle going from 50 km to dead stop) is 20G!!  That means that your 100 pound child now is 2000 pounds, or one ton!!  These are extremely high forces and the occupant restraint system (lap and shoulder belt) serve the same function as a vehicle lap/shoulder belt - keep them from being ejected (from their seat, which in this case is a wheelchair or stroller and from the vehicle.  If it is not done up properly, securely, and routed on the chair the way best practice dictates, this safety feature will not work!  For children that are riding school buses that travel at highway speed, the possible crash forces are even greater.  That is why it is so imperative that the restraint system is used properly.

For those who are interested in more documentation about the crash-testing standards, wheelchair transportation in general, and to look at some excellent crash-testing footage, go to http://www.rercwts.org/  This is an excellent site that has an absolute wealth of information and resources on it.  The only caution I have is that this is a US based site, and although the US is much ahead of Canada in rights and requirements for persons with disabilities, Canada leads in safety standards, and there are definitely products and concepts that are considered safe in the US, but not in Canada.

The other main lack in safe transportation (and of course this is just my opinion based on 15 years as a care provider and 10 years of working in the vehicle modification industry) is that there are few resources easily available to train people in real-world safe transportation.  I know Q'Straint and Sure Lok (the two restraint system manufacturers that meet Canadian requirements) do have great training programs.  What they do not address however is things such as the high-end complex seating systems that have a lot of components to them and make proper occupant restraint system location very difficult.  They don't really address or inform about the interaction of postural support (what you show above Barbara) and occupant restraint.  Only an Occupational or Physical Therapist can determine what is necessary for postural support for transport, but there may be a disconnect or lack of knowledge/understanding on the part of the person applying the occupant restraint system as to what the postural support is for, how it functions, and what it should look like done up.  Likewise, the person doing up the postural support may not realize why it is so absolutely vital in many cases to proper occupant restraint effectiveness.

Sorry for such a long note, but it's a complex process!

If you are a parent and have any concerns about how your child is being transported for school or in any other situation, you absolutely have the right and obligation to question the care provider, and refuse transport if it is not done properly!!!  Your child's safety is absolutely number one!

Transportation.

Because Braden has difficulty walking for long periods of time, we have a specialized pediatric stroller for him. There are several features that must be in place in order for a stroller to meet the criteria for 'transit ready' status. The stroller MUST  have a 5 point restraint system in order to secure the child safely. 

5 Point restraint system.

As you can see there are straps that go over each shoulder, a crotch strap and two straps that go over the hips. These straps all MUST be fastened into a center buckle(see red tab) in order for a child to be safely restrained. Depending on the disability of the child there may be other necessary additions to the stroller such as lateral supports for posture, head supports etc.Without these straps being done up the child who seizures or has other physical disabilities could fall from the stroller during transport. When their body is not properly positioned they could also become a 'missile' in a school bus during a crash. 

This is the type of bus lift that Braden has on his school bus.

Over the past year Braden has come home from school on the bus, without his stroller straps being fastened on FOUR occasions!! Braden is taken off the bus using a mechanical lift that is several feet off the ground. The potential for injury if he were to fall forward and off the lift is mind boggling.Look at the picture above. How would you feel if your cild were to fal from this ramp?


I was very upset the first time, but when speaking with the teacher I was given assurances that it was a horrible mistake that would not be repeated. While I was upset and made it very clear to them how upset I was I also felt that I needed to try and see this as something that was a singular incident and that it wouldn't be repeated because I trusted these people to keep Braden safe.


Last January (around the same time he had the bruises pictured previously) he arrived home AGAIN with no straps fastened. This time I was extremely upset. I called and spoke to the vice principal and told him that this was inexcusable! I reiterated how dangerous this situation could be, and how outraged I was to have to be dealing with this again. Of course the administration made all the appropriate apologies and promises to me, ran through a check with the teacher and the CEA's and I was given assurances that the situation had been dealt with. I was frustrated but for some reason I decided to move forward. In retrospect I would have done things differently at that point, but hindsight is 20/20.


12 DAYS later....yes, as unbelievable as that is...it happened AGAIN!!! I was almost paralyzed with disbelief! I cannot even begin to describe the anger I was feeling. I probably uttered a lot of words that I won't type here. When I could breathe again I called the school and spoke to the vice principal. Of course there was concern and he assured me he would look into ...yeah I had heard that before! I told him that I was NOT sending Braden back to school until I could have assurance that he would be safe. I had lost trust in the staff and was not feeling at all confidant about any steps they had taken to ensure me that my son was safe.


I asked the vice principal a question, which would soon be answered in a terrible way for me. I said, "does a student have to get seriously injured before the staff takes safety issues seriously?"


I was told that there would be a meeting scheduled later that week between the teacher, myself, the vice principal AND the health nurse(another issue). By that time the staff would have some concrete strategies to present to me in order to ensure safety. Wow...what does it take? Why is this so damn difficult? The CEA's know what they are doing? Just get them to DO IT!! This isn't rocket science!

Too scared to speak?

I have discovered something interesting since deciding to write this blog. There have been almost 300 page views and yet only one comment.

I have heard from more than one person that they are fearful to comment. This is EXACTLY why I am doing this. It is absolutely wrong that any parent should feel unable to stand up for their child out of fear of some type of backlash! 


How many incidents are going unreported because parents are afraid? How many parents are sending their children with special needs to school each day hoping and praying that they will return home safe and sound?


I understand that feeling. When I look off my balcony I can see the road leading to my sons school.I have, for quite some time, felt nauseous at the sound of ambulances speeding in that direction.That underlying fear that maybe something has happened. People who know me are aware that I am not a 'worrier'. But sometimes when promises have been made and broken regarding your child's safety at school you can't help it.


I believe that we, as parents/caregivers CAN have a loud voice. There are ways to make people hear us and to make changes to the system. But we MUST speak up. I have had to go to great lengths in the last several weeks to ensure that my voice has been heard. I have spoken, not only for my son, but for every child with special needs in our school system.


I want to say that posts on this blog can be made anonymously(I just changed that setting) or under the drop down menu where it says name you can use a first name only, or a fake name if you choose. But please post!!

You Would Think....

I have always tried to be realistic about Braden's condition. Because he seizures so much and is on many drugs that contribute to his issues with balance and body awareness I know that he tends to bump into things, stumble and trip.He gets bruises and scrapes but because he needs to be watched so closely I can generally tell you what caused them. In the school system he, and the other students in the Resource Room, are all considered to require 1-1 supervision at all times, so you would think that any injury would be duly noted and explained.

 Last January Braden came home from school and I was changing his diaper and noticed this massive bruise on his thigh. It measured about 2 1/2 x 3 1/2 inches and was very discolored. Braden does not bruise like this normally so I knew he had to really slam into something VERY hard to get a mark like this. You can see an "L" shape like a corner to the bruising. There was nothing written in the communication book so I called the school to ask the teacher what had happened. the teacher told me she had been out of the classroom that day and she was unaware of anything taking place, however she would check with the CEA's. 

The next day, after I emailed her these photos, she spoke to the CEA's...NOBODY had a clue what happened to Braden...not even any idea. I was totally amazed...something that caused such a mark and NOONE could tell me what happened!! NOBODY was watching him closely enough in that small room to see what happened??? 

As I said...you would think....... 

High School- A Whole New World!

High school was a new experience, especially in Braden's new school. It's a great school but what surprised and concerned me from the first day was the very small size of the Resource Room. When schools are built in BC they are required to have a certain square footage per student. I was told that our Resource Room had that square footage, however, it did not include the vast amount of equipment required for those students. There is a small space, a "quiet room" and another room for changing students. There is a bathroom with shower stall as well. Also housed in that classroom were at least for wheelchairs/strollers, a standing frame, physio balls/rolls, special chairs. Anyone with a child with special needs will understand how much equipment can be required. The entire room was like a daily obstacle course. Braden is very unsteady on his feet, some days more than others, and the room was like a minefield for him to navigate. I know I, and several other parents, had serious concerns about potential injuries to students who were already having problems with co-ordination,balance and motor planning. There were many people, including some professionals within the system that fought for more space, with no results. 


My question is - Why are classrooms like this expected to function with the same space requirements as a regular class full of students who spend the day at desks? I know that when I objected to Braden being placed in his chair for hours at a time I was often told that due to safety concerns with the limited space it was often necessary to keep students seated. So instead of dealing with the safety concerns of a small space the students with disabilities were often offered less than optimal learning conditions for their needs.


The classroom Braden was attending in elementary school was larger, more open and definitely less hazardous.It was also more play based as a lot of learning was accomplished this way.


My observation about this transition is not that different from a 'typical' transition from elementary to secondary schools. When typical students advance to high school there is a level of maturity that is encouraged, as well as a "leaving behind" of many of the trappings of childhood. With children who have special needs there are some things that are not the same. My son will always be a 'child' His functional level is somewhere between 9 months and two years old. There are safety measures that must be taken and observed at all times because he will never be an "adult" other than by age. His "space" needs to allow for optimal learning and maximum safety.

The Elementary Years.

Elementary school was a very positive experience.Braden attended Ellison elementary school from K-Grade 7. He enjoyed getting on the bus each day and heading off to school.Many of the CEA's in his class worked with him for most of those years. There was a great feeling of family, I received a great deal of support from them and I, in turn, supported them completely. We were,as expected, a team.  I had developed such a wonderful relationship with them based on an enormous sense of trust. Never once did I question that his safety was their ABSOLUTE top priority.In all those years I never had to worry about anyone deviating from the safety plan that was in place for him. I could send him to school knowing that he was respected and cared for.When I wheeled him out of that school after his Grade 7 "graduation" assembly I cried.

High school would prove to be a very different experience for Braden and for me.

Some Background

 This blog (Braden's and my story) is meant to bring awareness to an issue that I have come to learn may be more prevalent than many parents or the public are aware of. How safe are students with special needs in B.C. schools? It is not an indictment of a particular school or person, rather an examination of a system that may be failing our children and putting them at risk of injury or worse. I am on a fact finding mission, to uncover other safety concerns that parents have for their children with special needs in school. I am offering a place for support, sharing of experiences and perhaps brainstorming some solutions.      

 My son Braden had his first seizure at the age of 9 months. When he was approximately 4 years old he was diagnosed with a catastrophic epilepsy syndrome called Lennox Gastaut. Years of uncontrolled seizures and side effects from medications left him severely developmentally delayed and totally dependent on others for all his physical, health and safety needs. 

Braden requires total personal care; feeding, bathing, diapering etc.

I remember so clearly his first day of kindergarten.

When I walked him into that classroom and left him in the care of the teacher and the CEA's I faced a fear that is familiar to many parents of special needs children. 
Will they take care of him? Will he be safe? What if someone hurts him? Most children can come home and tell their parents about their day...this was where my biggest fear came from...Braden is also unable to speak or sign.He was absolutely , completely vulnerable.


Braden has always attended school in a special education class called a Resource Room. A small number of students, with varying disabilities and medical needs are supported by one teacher and several Certified Education Assistants. (CEA's) These assistants are currently required to take and pass a 10 month college course preparing them to deal with a wide variety of special needs (seizures, autism spectrum disorder,Down Syndrome, brain injuries, mobility issues, feeding tubes,hearing impairments,blindness,severe behavior issues and many others too numerous to mention) 


These students require modified educational programs called IEP's. (individualized education plans) Each student's plan is developed with the teacher, parents/caregivers,and any other support staff that are required for that particular student.This may be speech language pathologists, occupational therapists, physiotherapists, behavioral interventionists, psychologists,  medical professionals etc.


Children with medical needs also require a safety care plan as well. This is a plan that is written by the public health nurse for the district. It details the specific medical needs of the child,any necessary medications, emergency procedures to be taken if necessary. It must be signed off on by parents every year and updated as conditions change.


In Braden's situation it was written primarily around his seizure types, what to look for,how to treat them, what was 'normal' for him, when to call me, emergency contacts and when an ambulance should be called.


The health nurse then attends the class to provide training to the CEA's on how  to deal with each students specific medical needs.


With all these plans in place parents SHOULD feel confidant that their child's needs, both educational and safety are being well looked after. Right??