[tri-med] To Be A Rabble Rouser or Not?

Yesterday I was in a reasonably good mood. Alex hasnt been well, but I am 
getting used to it and I had still managed to get myself into a good mood.
Then I got an email which turned me into a spitting chips, mad as all heck 
fireball. 

I try very hard not to react when I am angry in case I say something that I 
will later regret. Most of you know my own personal rule of sitting on anything 
thats hard or divides me for 24 hours before I respond. 

Well its been 24 hours and I am still as angry as can be. So I will toss it to 
you guys for advice.

Just as background, the master as you know functions within the normal range 
for most things. He is independently mobile and really quite capable. However 
he is dogged by multiple medical issues which are life threatening and which 
can flare up with absolutely no warning.

Disability support services in this state are geared solely towards those 
children with a moderate or greater intellectual disability or to a lesser 
extent those with a recognised physical disability. 

Kids like Alex miss out and the arguement is political - health says community 
services should cover it, community says health should cover it. And Alex 
really is a rare of the rares - there are few kids like Alex around that 
function well and have so many health issues. 

Six months ago I got onto one of my bandwagons and lobbied our state minister 
for health for services. His response at the time was to provide me a 
caseworker to access services for 9 months.

I was cynical when Veronica came on board. She was ever so optimistic and I was 
ever cynical. We have both come to respect each other. She for what I go 
through and have gone through and the time it takes. I for what she has 
accessed.

One of the things Veronica has been trying to set up is respite with Northcott. 
Northcott is our old Crippled Children's Association. They are rather a large 
group that get about 50% of their funding from the government. They also took 
over the running of the Spina Bifida Association in Australia.  

Northcott have a number of respite houses, and they take children with spina 
bifida and other problems that can't get services elsewhere. One of the 
problems that many people have with spina bifida have are bladder issues, and 
many are catheterised regularly throughout the day and they need to be turned 
frequently during the night etc.

Now Alex does have spina bifida occulta, but in the scheme of things for the 
master its a minor issue. He certainly doesn't need catheterisation. Alex is 
also anaphylactic to latex. Latex allergy is very high amongst those with spina 
bifida and we get most of our information about latex allergy in children from 
the spina bifida association. 

Now my problem. 
Veronica has been trying to get Alex a place in one of Northcott's respite 
houses. Ultimately it will mean he will spend one weekend there four times a 
year plus three or four days during the school holidays. 

Like most people Northcott were nervous about taking Alex so we have been 
bending over backwards to make them feel comfortable. 

Alex has already had 2 days at the house for orientation. To see if he liked it 
and also to make sure the staff were comfortable. Northcott insisted that on 
those visits he be accompanied by a registered nurse as the staff had not had 
training in administering the epi-pen (a preloaded, self adminsterable 
injection of adrenaline in case of anaphylaxis - you take the pen out of the 
plastic case and press it firmly against the thigh and count to 10. Alex can do 
it to himself if need be) and also in the bucal administration of midazolam in 
case of a Shapiro's Crisis. (you simply take a plastic vial of Midazolam 
(Versed) and squirt the entire contents into his mouth. There is no mixing, or 
fuss. Alex accepts the medication no problem and you cant administer it wrong. 
If he swallows its no problem (he is supposed to hold it in is mouth - its only 
1ml - for 2 minutes) You cant even overdose him - he could have 6 vials with no 
real ill effects. 

The orientation days went without incident and Alex had a ball. The staff 
seemed quite comfortable with him. They certainly expressed no fears. The 
registered nurse went one time and his aid from school went the other (no nurse 
was available). The nurse was paid for by Veronica's employer because they feel 
sorry for me that we cant access anything and I get no real time out.

Everything was set up for the training this coming Wednesday. We had two 
clinical nurse consultants coming from the hospital. One to train in 
anaphylaxis and the other to train in Midazolam administration. Cost for these 
nurses for the training is $100 each - again Northcott refused to pay and again 
Veronica's employer was paying. (Her employer gets most of their funding from 
Ronald MacDonald Children's Charities - three cheers for the Golden Arches!!!)

The rationale behind all of this is that once the training took place Alex 
could attend without a registered nurse and stay overnight. They have not 
expressed any concern about the cardio-respiratory monitor or the Bi-PAP which 
I did expect. (but then again they havent seen them yet - they have only been 
told about them)

So everything was all set - until Friday afternoon when I got an email from 
Northcott telling me that they had called the training off. They are expressing 
concerns that even though an emergency situation may be unlikely to occur that 
there staff are not qualified to care for him. And also that their insurance 
company will not cover them. Remember these people DO catheterise kids every 
weekend with all the inherent risks of infection, bladder puncture and so on.

They are stating that the only way Alex can attend is with a registered nurse 
and I must supply that registered nurse. Private rates for a registered nurse 
for a weekend cost over $1,000 so you can see this isnt going to happen, not 
from me anyway.

This is not a decision coming from the staff at the house, but from Northcott's 
administration.

I am already frustrated by their administrative staff. Part if their staff is a 
clinical nurse consultant. When we went to one of the meetings to set all of 
this up the nurse kept carrying on that Midazolam was an anaesthetic. Its not - 
no way could it be called an anaesthetic drug. Its a sedative the same way 
valium is (its the same family of drugs) and they give valium all the time as a 
medication because they care for kids with CP. (it helps reduce spasticity). No 
way would this nurse listen to me, or to the CNC's who train in the use of 
Midazolam at the kids hospital. She wouldn't even listen to the doctors who 
told her it wasnt an anaesthetic.

I have already contacted the Anaphylaxis Association and confirmed that its 
illegal for them to do this. In fact they have been acting illegally by 
insisting a registered nurse attend with him for the orientation. 

In effect they are breeching the Disability Discrimination Act which says that 
they cannot discriminate or treat him less favourably because of his 
disability. They also cannot provide a service and ask Alex (or I) to pay more 
for that same service because of his disability. 

So in short they have to provide the same service they would to others. If they 
want a registered nurse they have to pay. 

The only way out of it is if they claim unjustifiable hardship - which because 
they provide catheterisation for others already they can't. 

So now my dilemma. Do I make an issue of this and insist that they meet their 
legal and society obligations or do I just say forget it?

I am disgusted that a large group like Northcott would discriminate like this. 
I do understand their reluctance, but I would think that they would be more 
understanding, know their obligations and try a little harder.

I can show them a copy of the act, and also a previous case that was taken to 
court. (the Department of Education tried to stop children with anaphylaxis 
attending mainstream school and failed miserably. The court decided that 
teachers COULD be asked to administer adrenaline as part of their job and duty 
of care) I can also tell them that they should be talking to their solicitor 
not just their insurance company and see what they say.

I can access a solicitor to act pro bono (he is the father of a child who is 
also anaphylactic to peanuts) and I can involve the Anti-Discrimination Board. 

It will go to conciliation before it goes to court. But to be frank I am tired 
of fighting for every little thing that we get. I am just so tempted to say to 
he** with it and just ignore the whole business and keep on keeping on as we 
have for the last 10 years. I am sick and tired of breaking down barriers - for 
once I would just like others to do the right thing. 

And it does happen. Whilst we have been organising all of this I have also been 
organising for Alex to attend Cubs as you know. The stupidity is that the 
Scouting Association have bent over backwards to accept Alex and are not 
worried about the epi-pen etc even though Alex is the first in his troop to 
have such severe disabilities. Yet a group designed to cater for children with 
disabilities is acting in a totally ignorant manner. I would have expected it 
the other way around!!!

I already have fights ahead that I know about - for example high school. (Our 
local high school has already said it doesn't want to take Alex when its time 
for him to attend)

So what do you guys think? Fight for whats right and all those who travel the 
road behind us. Or just bury my head in the sand? I am grateful for those who 
have fought the good fight befoere us and from which we benefit.  And grateful 
isnt strong enough a word. But I am tired of the fighting for every inch.

Love many, hate few, learn to paddle your own canoe. 
  -- American Proverb 

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (9 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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