The race is on....

 

Just goofing around

  

Many people who do not have a child with special needs or medical issues are often unaware of the services and funding that are available. Sadly even some of the families who would qualify don't even know about them. It's often the situation that a child may be diagnosed with something and then it's up to the parent to seek out the help that they need and qualify for. I must say that there has to be a better way because if you don't know what is out there in the first place then how the heck do you find out about it? I recall my first meeting with a social worker several years ago. It went a little something like this. Social worker: "So what services were you looking for Colleen?" Me: "What services are available?" Social Worker: "I can tell you about them once you tell me what sorts of services you were hoping for". This continued for several turns back and forth. Eventually I told her what in my wildest dreams I would like to have for Andrew. It shouldn't be a surprise to anyone that about 90% of stuff I was looking for were things they didn't offer anyway. Gee that was productive. Fast forward to present day and I'm much older and wiser but it's been a long process to learn the system.


I am extremely fortunate to actually work in this field for my occupation. Because I am on a team with the health region that connects people to these services all the time I knew where to start last summer when Andrew was diagnosed with Autism. Not that it hasn't also been a learning process despite my background but I sure as heck know that other families have it a lot harder than I did in accessing these things. We even have a new social worker through a government program called Family Supports for Children with Disabilities (FSCD). I'll start by saying I really hate that name. I accept that my children are not typical. I even sometimes describe them as having special needs. But to actually say my children are disabled is really hard for me. I get that the world probably views them that way but why do I have to as well in order to access funding? I can't tell you how many parents of the children on my caseload won't even talk to me about this program because they can't handle the word disabled. It's such a shame. This program offers funding for a number of different things but the one I was most interested in after Andrews Autism diagnosis involves treatment with an aide who usually comes to your home and works with your child for a set number of hours per week. There are actually two levels to this. One is considered less intense and has an aide that is the only person working with your child. The other includes a multidisciplinary team that usually consists of a psychologist, a speech pathologist, an occupational therapist, a physiotherapist, and the aide. Of course who sees your child depends on what their needs are. It's quite a process to access this higher level of treatment and it can be difficult to qualify for. Then there is the added burden for families with school aged children about trying to find enough hours in the day to actually have all these people see your child without giving up all the fun stuff about being a kid in the first place.

So having the background that I do I was pretty confident that I could get Andrew approved for these higher level services but was debating about whether I really wanted to change our lives quite that dramatically. Having someone come into your home up to 5 days a week is a huge adjustment. I know because I used to be an aide working in other peoples homes. I have to say just like any random person coming into your home you won't like all of them. That would probably be tolerable once a week but imagine every afternoon all week long for up to three years of funded treatment. Even if you like the person it's a lot to ask of families. Let's just say it's really not for everyone. So while there is a valid point to provide intensive intervention I see what that level of commitment can do to your family life. I was pretty settled on the choice to start with just the aide and see where we got with that when we were dealing with Autism. However now that we are facing Muscular Dystrophy as a possibility I have been forced to rethink this a little. Ongoing physio would be a huge benefit for Andrew. Regardless of the outcome of the genetic testing he still has ongoing motor difficulties. I thought I'd be smart and proactive so I contacted our social worker with FSCD to discuss this as a possibility.

To my heart break I was told that the option may now be off the table. A progressive condition would mean Andrew would be turned down for this type of treatment. In other words they won't put money into a kid whose motor skills will get worse over time.....even if it will slow the rate of decline and keep him walking for a few extra years. Despite the fact that he would make gains in all areas and the only ones he might lose down the road would be the motor ones it doesn't matter according to the rules. He's now a write-off on paper and is no longer worth the investment of time and dollars. I couldn't believe it. What a rip off!! Personally I think keeping people able to function and be productive for longer makes the most sense. In theory the sooner he becomes completely disabled the sooner he'll start costing more in resources, time, and money. That doesn't even begin to look at the benefit to him as a human being. Drew is an amazing kid with huge potential. How dare they tell me he's not worth it!! Of course they didn't really put it quite that bluntly but I knew exactly what they meant.

I felt really down in the dumps about this for a few days and then I decided that if the system was rigged against us once we get the results that maybe we shouldn't wait for them. It was almost like in the cartoons where I was sitting there kind of moping about this lousy turn of events when like an "Ah ha" moment with the little light bulb above my head it occurred to me. Maybe if I can start the process based on what we currently know about him including what areas he's struggling with we can get the help in place before we find out the test results. I had been eagerly waiting for word on the genetic testing but now I'm kind of hoping for enough time to do everything before we get the call. Talk about a roller coaster ride. If we can just have enough time to get assessments completed and have him approved then I don't need to worry that they'll turn him down based on something that might not start happening until he's an adult. Of course I hope the test results for the Muscular Dystrophy are negative but I can't sit on my butt now while we wait. I just won't let them steal his options away from us.

So we'll call this a side adventure to the main one. I've already rounded up the troops. A speech pathologist and occupational therapist who will do what those of us in the industry might call a "quick and dirty" assessment. The goal is to just get him approved with the least amount of fuss and drama possible so that we still have the option of treatment available to us. For anyone out there who thinks we might be cheating the system I absolutely promise you that this money up front will save everyone down the road. There are countless studies that say prevention and early intervention is a fraction of the cost of long term care later on. Besides, while I wouldn't change who my kids are I'd be lying if I said I didn't already feel a bit cheated by facing this diagnosis. Government programs works on absolutes. This one is no exception. They won't even book an appointment with you until you send in your letter of diagnosis of something they consider disabling so I'm playing by their own rules. As of today I don't actually have a diagnosis for Drew saying that he has a worsening condition like Muscular Dystrophy so technically he could still qualify for treatment. Don't you love when playing by the rules means you are more likely to win? How often does that happen?

Cross your fingers and wish us luck!!