living after the death of a baby, living with Autism, living as a family of six, living on our organic homestead, living miserably, hopefully, and with joy, and somedays just living

Posts tagged ‘meeting’

Fighting for Someone Else’s Kids

I like a good fight.  I don’t like having my feelings hurt, but I’m all for a good fight for the sake of my children.  A while back my Autism Support worker called to say she had recommended my name to be a part of a provincial forum on policy change.  YES! I was excited.  I want to be part of the group that makes it happen, that shines a light on our province’s Autism support policies.  Weeks go by, and I figure my name wasn’t picked, oh well, too bad, I guess maybe some other time.

Then on Friday, I get a call asking if I would like to attend the meeting on Monday night.  Yes, Monday of the next week three day away.  That same day, another phone call, they needed my address, so they can courier me a letter.  I don’t have an address, so I had Kyle email her his work address.  They were going to try and send it one day express, so that it would be there that day, or Monday.  It never came.  But I did get an email to say it had been couriered, and in case it didn’t come they sent it as an attachment.  Ummm… hello?!?  Seriously.  Why courier it then?  Please tell me that the government doesn’t feel that  it’s okay to spend 25 bucks to send me a letter they can send as an attachment, but feels it has the right to quibble over whether my compounded prescription can be covered?

Here is the letter: Focus Group for ASD and FASD

The meeting consisted of a group of  12 parents, some of us were alone and some were parent couples, voicing  concerns for 9 families.  It started with the facilitators giving us a questionnaire, where we had to write in our answers.  There were 5 or so with questions like: Describe your child’s limitations? What are the challenges you face providing daily care?  Describe what types of things we could add to the services offered to help with your child’s emotional, mental, physical, education and/or spiritual well being? All with about 2 inches of space under them for filling in answers.  It was explained that we would be given a bit of time to fill them out, and then when it seem like most people had stopped writing, we would start the meeting (it started at 6:30 and had an end time of 8:30) .  I think they were surprised to see people using the backs of their papers, and eventually told us to wrap up because we would run out of time.  Now why in the world would they not email that kind of thing to us ahead of time?  So we could compose clear answers. The kind without the use of arrows pointing to the rest of the answer scribbled on a separate spot on the paper, and so that the answers could be clearly constructed,well thought out, and made with input from both parents/caregivers.  Shame on them for not figuring that out, or was it a time wasting ploy? I hate being all conspiracy theorist, or contemplating alternative motives, I want to believe it was just an oversight, I’m just not sure.

The group discussion started with a question about the services we use and find helpful that are already covered by the health ministry.  That was summed up quite quickly.  Then on the deficits.  I have to tell you among parents there was no fighting, no one disagreed with anyone, and no one felt anyone brought up an illegitimate concern.  In fact people would raise their concern, and most people would bob their heads along, or shake their heads in disbelief.    It seems our government  is more keen to provide group housing and make work projects for less capable adults, than they are to providing the types of therapy that will help these kids, at a time when they are most able to benefit from therapy, therefore becoming more capable of socialization and standard education, thus making them future tax payers instead of future tax burdens.

If you want an example of ridiculous policy here is one from one mom.   A little boy makes use of a weighted vest to help with behavior modification, he goes to daycare, the government pays the daycare an allotted amount of funding to provide the little boy with a vest, specifically fitted and weighted to his needs.  When the daycare later says they are not capable of the type care the little boy needs,and they should find daycare elsewhere, the family can not transfer the vest to their new daycare because…wait for it… it belongs to the old one.  The family can not apply for new funding for a vest because they have used up the allotted funds available to their family in acquiring the old vest.  Now a child specific vest sits unused in a daycare center, and because people are weird about what’s theirs, the daycare won’t give it up, all because through current government rules the funds are sent to the daycare not the family, and so it’s the daycare’s vest to do with as they please.

After many well spoken arguments presented with feeling, emotion, passion, and drive to get what we need, we are told that the information gathered from our meeting, along with info gathered from parent groups, like the one we were in from Regina, LaRonge and one other place I’m not familiar with, nor can remember, will be combined and written up into a report.  Then sent to the ministry for review of policy.  Well in my opinion,  there goes our voices,  there goes our power.  I just don’t believe that my statement that we NEED!! funding for basic therapy, in order to get these kids to a place where they CAN behave and socialize in a more normal way, thus, giving them the best chance to feel like they belong in our society, is going to be bulleted to something like this.  – Parents feel there should be  funding for Occupational, Speech and Physical therapy, as well as funding for other therapies of their choosing.  We don’t get to know when our information is presented, or what kind of change will come of it until/if there is a policy change.  Hey! SASKATCHEWAN POLICY MAKERS!!  How about having parents directly involved in policy change?  How about instead of sending someone to report back to you with what parents are saying, you come hear it for yourself!!  Come on!  Please at least look me in the eye and say no.

I never want to go into a meeting with my dukes up, no one wants want to help someone who seems impossible.  I never want to go in to a meeting completely passive either.  From now on we go in with our arms down and our fists curled.    Our province won’t release prevalence data, they say there is no way to know when a child is diagnosed. Funny thing, ask any parent when their kid was diagnosed and they can tell you, I bet a majority can give you a date and what the aproximated time was too. It’s a life altering thing.  I know from Autism services what the Saskatoon birth rate is annually, and using the commonly held belief that 1 in 150 children fit on the spectrum somewhere a good guess on how many kids should be referred to Autism services can be extrapolated.  Sadly Autism Services is seeing nearly 5 times the “should be” number come through it’s doors.  Many parents believe that Saskatchewan Autism rates may be linked with the higher than national average rates of MS cases found in our province, but with out prevalence data there no way to correlate.  The Government is HAPPY to tell us that they are investing another 5 million dollars for ASD and FASD, but without prevalence data there is no way to know what that equates to, or how it disperses per child, let alone how Saskatchewan compares to other provinces.  To me it seems that prevalence data may be being withheld on purpose.  There goes my inner conspiracy theorist again.  It hardly seems grand to dish out and extra 5 mil, if everyone were to find out that it needs to blanket thousands more kids than one would think, or that something in our province is amiss and we are facing a diagnosis epidemic.

It feels like I’m fighting for someone’s kids.  The change is slow.  I wonder if Elijah will have time to benefit at all.   I said in the meeting, on some level it’s okay if it’s all for someone else because someone needs to start the push, but it feels unfair, and if we don’t start working on it now with the way Autism rates are rising, the province is going to have a much bigger fight in the future, so they ought to start setting it right, today.