I have not been here for a long long time. To be honest I forgot my login, and had lost the email account associated with this blog! I finally got the email figured out, so here I am.
So who is to blame for the high abortion rate of disabled children? For those of you in the USA, the overturning of Roe v Wade has meant that the lives of these children is finally being given some value, at least in some states. In the meanwhile, here in good old Australia, the abortion rate for babies with Down Syndrome who have been prenatally given that diagnosis is a staggering 96%!
But I don’t blame the government. I don’t blame the parents. I will admit to partially blaming the health system who pushes abortion. But who I really blame is the church.
Since Samara was born, 14 1/2 years ago now 😮, I have lost my faith in Christians, and in Churches in particular. Not in God, although I must admit even this has been a struggle to maintain at times, but in those who are supposed to represent Him.
I think affluence is part of the problem. See, I went to Fiji just before the pandemic hit. While we were surrounded by luxury out on Denaru, that’s not how the people live. Fiji is still largely a third world country. And apart from the 2 special schools, there is not a lot of help for the disabled. We visited the country’s first village. Had a tour, sat on the hard pews in their church, and spent a lot of time chatting with the ladies who showed us around. As in everywhere we went in Fiji, the people loved Samara and gravitated towards her. Here we are outside the church that most of the village attends.
Anyway, when we were chatting with our tour guides, they were telling us about a young girl in their village who cannot walk or talk. She does not have a wheelchair even (and if it wasn’t for the pandemic, we would have taken her one by now, but we are not allowed into the country). I asked how her parents manage. And the answer was a simple one. One the west has forgotten. “Oh, the whole village chips in to help out!” Mind blowing right? A village that is largely centred around a Christian Ethos that values ALL family members. And despite the fact we live in a country (that we do love - we chose it after all!) that spends literally hundreds of thousands of dollars a year on Samaras care, therapy and equipment; well, I was jealous.
Because more important than the money, the therapies and even the equipment, is love. And that is what these people have for one another.
Imagine if those who claim to be Christian here, those who fill the pews on Sundays to get their spiritual fix, actually started to look outwards into their community. To put love ahead of money or what the disabled can give back to you.
For those outside Australia, a few years ago, we started receiving support from a newly formed government insurance scheme, the NDIS, or National Disability Insurance Scheme. This scheme is funded by taking an entirely new form of tax specifically to fund this compulsory scheme. Sometimes it is amazing and provides all a person with a disability needs. Other times it causes a lot of heartache, a lot of extra work, and a lot of disappointment. We personally have had a bit of each. Each year we have to submit a bunch of records, recommendations, etc to get a plan for the following 12 months. Sometimes we get a good planner and a good budget. Other times we get a planner who thinks we are asking for them to personally pay, and that budget can be cut by (in our case) 66% over what was deemed necessary the year before. We spent 2 years fighting, and now finally have a good plan again.
In terms of getting Samara what she needs, this is great news! But it has also been a real eye opener. See, we have been looking for new Support Workers for Samara. Now, don’t get me wrong, a good support worker should be paid a decent wage. However, NDIS set upper limits on what they will pay for a support worker. This is around $62/hour for weekdays. The idea being that an agency needs to charge that amount to cover all their overheads, training, insurance, and actually paying the worker. At this rate, most Support Workers earn under $30/hour. Not a massive wage, but nearly 50% above minimum wage. BUT, many support workers have decided to go out on their own. The pay is better, the rules aren’t quite so strict, which can work well for both parties, and the cost to the client is less, meaning their funds go further. Instead of 5 hours a week at $60, they can get 6 hours at $50 for example. But lately, there has been a massive increase in first time support workers with no training, expecting to walk in off the street and earn $50/hour. Or more. Many of these people don’t want to do the messy stuff - changing soiled continence aids, showering, toileting, dealing with behaviour issues, teaching the client life skills, etc. Oh, no. These people have started hearing through the grapevine that they can get a cushy job taking disabled clients out on field trips, to the shops, etc, and get paid $50/hour for it!
This aspect of the job is something that people used to volunteer to do. The disabled were not expected to pay $50/hour to have “friends”. Worse, they didn’t completely lose those friends when the money stopped rolling in. Because they had real friends. People who wanted to spend time with them, even if it did take a bit more effort than with their able bodied friends.
But there is a massive amount of money being paid by the government (via the people), that is able to be used to employ all these fake friends. So what does the church do? NOTHING!! They are happy to hand over the care of the “widows and orphans” (anyone who needs a bit of extra help) to the government. Jesus wouldn’t expect us to get our hands dirty now, would he?
When I was in high school, a friend and I volunteered with kids and young adults with disabilities. We would not have dreamed of expecting payment. It was good for us. It was fun. It gave us a purpose. Our “reward” was that we met some amazing people. People the rest of the world overlooks.
Now, not even the church helps out. If you have a disabled child, don’t expect the church to help. Chances are you will be not only disappointed, but that you will be hurt, and you will come away disillusioned. Church is the last place I would direct a parent of a disabled child. And with that in mind, should the churches be judging those who don’t think they can handle this life? Maybe instead of shouting at them and holding up posters, the church would do well to be there for these families. Not just occasionally. Not just towards those who hold positions of power in the church. Not just to church members even. But to everyone. In such a way that the wider community would KNOW they would be okay, because somebody cares.
