So here it is:
Our special needs journey started nearly 4 years ago. My middle child has ataxic cerebral palsy, sensory processing disorder and hypermobile joints. Unfortunately it wasn’t until my 3rd child started down her own special needs pathway that I learnt how much we had missed out on. We were never given information or assistance from our therapy providers on how to make the journey easier. I was never told about Disability Services, respite, Centrelink payments or Government funding. To this day I am still annoyed. It feels like you are expected to know what you are entitled to and ask for it. When my youngest was 11 months she was admitted to PMH for a week and we met our social worker. It was at this meeting that I learned so much. We had already contacted Centrelink ourselves and received Carers Allowance for my other daughter but that was all. Of a sudden my eyes were opened to the world of possibilities. We were told for the past 2 years we could have been accessing funds for respite. We could have used Ronald McDonald holiday houses all around WA. Depending on your child’s condition Starlight Foundation can grant wishes for a sick child. I went out of that meeting determined to learn more. The few things we have accessed over time have been through other people sharing what they know. This left me feeling so frustrated as there really needs to be a central person whose job it is to start you off. To guide you and make sure you receive everything you are entitled to. I also found if your child was like mine and didn’t have a diagnosis or a well-known disorder it became harder. Eligibility for things came into question and when asked people couldn’t tell me if we fit their criteria. Since those early days of discovery led me to WA Special Families I am grateful I went searching. Once I met with Anita I learned about Kalparrin and their services in PMH. How I wished I had known that while staying there. I am now a region leader and admin on the WASF Facebook page and I write a blog about our story. I believe in telling our story not only to educate others about my girls but to pass on knowledge.
One of my most popular blog posts was about the Centrelink Carers Adjustment Payment. Not only is it not well known but the application form is detailed and long. After doing it twice and posting about it over and over again I wrote a post on how I did it. At least 50 people a day are reading it which tells me it’s helping others.
The other day we got our letter accepting my youngest into Disability Services so I can’t wait to meet my LAC and find out what they offer. Many families don’t know about the service and what they offer and as such they miss out. An LAC can assist you in finding funding and talking you about what is available in the community. I have heard stories of Ipads, trampolines, holidays, travel vouchers, bathroom renovations and more being funded and assistance provided to families in need. I am sure there are lots of people out there who are eligible are missing out, simply as they don’t know about it.
If I could share all this info with a new family that would be great. I have spoken to WASF and Kalparrin about how we can best help families starting on the special needs path. To ensure there aren’t people missing out and struggling unnecessarily. Even though our system isn’t perfect there is help out there.
The first step is to find it….
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