Like I said in one of my early posts, I made the choice to complain (and I did complain) about our Manitoba Healthcare system to my local MLA. At first I thought it was a great idea, then I started getting calls and I sort of questioned my decision. What did I get myself into? I want less stress, NOT MORE, but it didn’t take me long to realize, it was the right thing to do. Nothing will ever change if someone doesn’t speak up. What I hadn’t realize until I attended the conference in Ontario, was that I was approaching it all wrong. Yes, the system does need help. It might work from the government’s point of view but it is NOT actually working for the families who really need it. That doesn’t mean it can’t work BUT the big difference for me was how I was going to go about getting it changed. We need to work together at changing the system for the better-both sides need each other. Demanding and complaining wasn’t going to really make a difference. I might not ever see the change for Ema, but I can work at making sure it gets better for other families.
Along with my letter, MLA Shannon Martin attached his own letter and distributed to the Ministers. We were heard… and certainly got some attention. I am not sure if my initial point was very clear but they do know something about RETT SYNDROME now. It would be a huge bonus if they realized from my letter how difficult it is for our families (all special needs) to get the help and how bad we all suffer sometimes.
I really struggle with our government spending so much money on health care and it doesn’t seem to be going where it can actually benefit people the most. We live in a wonderful country. We really do. We all live very privileged lives, so I actually do feel a bit guilty complaining, but I also know my intentions are good.
I am not out on some witch hunt. I don’t want anyone’s job, I just want the Manitoba Government to work with our Special Needs Families to improve the system. I know that our family uses a lot of services (OT, Speech, Developmental worker, doctors) with Ema and it costs every tax payer a lot of money. We really do appreciate what we get. We live in a country where there are many different forms of help, even if we have to search for it and maybe even pay for it ourselves… it is available. We have some excellent doctors, even though the initial wait to see them is really long. Lack of funding adds to wait times for testing which results in services that are wasted and misused until proper diagnoses are given. What is really tough is the red tape and unrealistic guidelines and rules that are set out for families. We know some people manipulate the system, but for the majority of us middle-income working families, we just want help – NOT HANDOUTS. The medical system waits until after we have a problem, then tries to deal with the issue, instead of approaching things in a PRO active way. All we want is a clear view of what options we have and the ability to make them work for each individual, in a timely matter.
I am a firm believer that if I don’t say anything, I shouldn’t really complain. If I can’t help fix the problem, I am a part of the problem. Issues can never get better if they are not addressed, so that is why I contacted our MLA. To tell you the truth, I was also at a breaking point with some of the services and just needed to be heard. I knew from seeing a doctor already, I was close to a major melt down, so I needed to say something. We were not asking for “free” services, I called to say that the services and funds they already “provided” needed to be easier and more available for our families to access. The current system was causing us all so much unwanted stress, just trying to figure out.
I know what you are thinking…Oh no she is one of “those people” and at first I think I was.
The conference in Ontario and one particular women, Terry Boyd, opened up my mind. She said something in the Sunday morning meeting that really registered with me. She said we needed to work in a partnership with the government (and doctors) and not act as their enemy.
I received a call from the Minister of Health’s office and Children’s Disability Services. Both calls were very frustrating for me initially, REALLY, I am not sure what I expected them to say. How do I expected any of them to really understand what it is like for us unless they live with a special needs child. I didn’t have a clue before I had Ema, but I did think I understood what it would feel like. I had NO clue. It is way more difficult than I ever imagined on many levels. It tests you mentally, physically and spiritually.
The Health Ministers office was concerned that Ema’s doctors were not going their job. Ema’s doctors are excellent and I told them that? They were concerned I was missing out on some services from that end? I finally just said “You are missing the point”. Our families live in high stress situations already, we wait months to get into see a specialist, many more months waiting for test results and the government expects us to figure out their system relatively on our own. We fill out endless amounts of paper work for funding and programs, to usually hear we don’t qualify anyway? Everything needs to be approved IN ADVANCE? or they don’t cover it because we make too much money??????
We just want a simple process that treats us as individual families and makes all information available to us, upfront. We need to be a partner in the decisions they are making for our families. What works for one special needs child certainly doesn’t work for another, but we need to be part of the solution… even if that means we have to pay fees or premiums.
One of my first thoughts after I received my calls was “What happens to people when they get elected? Where does the common sense go? Who makes these guidelines? I think they all need to have Ema for a sleep over one night for a dose of reality.” They are the same people who we elected, but for the most part none of them have been in our situations-they really don’t know. It is just like before I had children, I thought that my house would always remain clean with kids, they would always have clean faces and they would always listen and be well-behaved???? My thought couldn’t have been further from reality. If you have been to my house or seen my children when they were young, you can contest to that!
I really do think we could get the system working better if we just work together. That may sound really naïve but from my experience with the calls I have now received from the government, I really think there is huge communication issues on both sides. Both sides need to really take a clear look at what is happening and act on making it better. What the government thinks is happening, isn’t for us and what we think?- well we (tax payers) honestly always think that the government spends too much on nothing. They need actual parents to speak with the people who make the policies and spend the money.
I started this post before I went to Ontario and my original thoughts were “The government always posts how much money they put into Healthcare and Family Services, truthfully, I am not sure where it all goes. Here are the services we get from Children’s Disabilities; 6 hours of respite a week, on their terms, with their choice of workers, diapers courier to our home, and supposedly special equipment (on loan) that could help Ema, IF the BUDGET permits and if it sits in high enough priority???? We do have OT and speech, but I have never met our new OT and Ema can’t talk and never will…”, which is all true to a certain extent. There are actually more facts and options then I originally realized when I wrote that. Somewhere in the system, communication is being lost, BIG TIME. Will that solve all the problems? NO, but that would be a great starting point as far as I am concerned.
Here is how I originally saw equipment requests as being handled. Ema’s first OT put in a request for a mini trampoline, pressure vest and body sock in 2012. Our OT since changed. They did provide the vest within a month, which Ema HATES. We were told to hang off on purchasing the other items because they do the purchasing. We finally gave in and bought the mini trampoline for $49. We got final approval for funding this year (2014). We waited so long, I had to even ask who requested the body sock, as I couldn’t remember? and there was no way I had the receipt for the trampoline after that long. The explanation I received about how the “system” works was again about the priority and necessity. Did Ema really need it…??? They say their “specialists” help determine what is needed first, items are labeled high to lowest priority. So I wonder who was the specialist that helped them determine what Ema’s priority for these items were? as none of Ema’s workers have ever worked with, been to any conferences or discussed her syndrome with doctors that specialize in Rett Syndrome. I am in no way criticizing our specialists. They are all really great people, but none of them have any insight on Rett Syndrome. I had also written that communication items like the iPad was not covered and wanted them to tell me what would be considered important for a non verbal child then? Our speech pathologist had applied to get an iPad, but was told it wasn’t covered.
After speaking to Special Disability Services, I realized they prioritized by the information given to them. If I would have known that in advance, I could have help get them some information on Rett Syndrome. As parents, if we don’t understand the process or reasoning behind funding decisions, sure we are going to get angry and upset when we are denied, our children are all “most” important to us. We need to work together in order to make the system work. I really still have no idea of how the system works or what we have for options or help, as everyone you speak with has a different list of what is and isn’t available. This is what has to change or at least be communicated to us better.
I asked if they have panels of parents who make suggestions? At first the answer was “YES”. So I asked again, just to be clear. Well, they have panels of people who SPEAK with parents, so “NO” not directly. That is NOT the same. Government needs to speak with us directly to really get the full picture. They need to see how much we struggle in certain places but they also have to hear what is working.
I had given up all Children’s Disability Services after my initial call from a supervisor and even after the first call from the head of Children’s Disability Services. I thought the supervisor didn’t try to hear what I was saying and I found her just plain rude. If there is one thing Special Needs parents need is to be listened to not told. We are already stressed from having experts and specialist constantly telling us what needs to be done. Getting the services was not worth my time or energy. It is honestly just less stressful and faster to purchase items Ema requires and be done with it, so Ema can benefit from them right away. It stressed me out way to much to have to constantly advocate for what we actually could use and need, not what “THEY” say we should need. I have since had a better conversation with Children’s Disability Services. I think I might have got my point heard… I think what is lacking the most might be communication. Both sides lack of knowledge and understanding is a HUGE problem.
I have already decided that making an improvement to the system is a huge priority in my life. I want to make sure Special Needs Families are heard and even if we help only a few families, it will all be worth it in the end.
And you may call me really naïve but I prefer to call it HOPEFUL. We do have to start somewhere. I am very eager to improve our system and I welcome any Minister, MLA, or government agency into our home as I think they might be surprised by what a girl with Rett Syndrome can teach them!
EYES on EMA 