Wallan’s Kym Puehringer-Head is frustrated by the lengthy delays in the National Disability Insurance Scheme that can help improve her husband’s quality of life.
Mark Puehringer has Myotonic Dystrophy, a condition that affects muscles and other organs in the body.
The word myotonic relates to the inability to relax muscles at will, and the condition over time causes progressive muscle degeneration and shrinkage of the muscle tissue.
“Mark was formally diagnosed in 2000. We got married in 2014 and applied for the NDIS in the middle of last year because it took years before it was available in this area,” she said.
“I’ve been told we’re on a very good plan, but the frustrating part of it is they say the NDIS is about the clients wants and needs… we now have to wait approximately 18 months to receive all the equipment that will help his quality of life.
“I am hoping that my husband will live until his 70s, but unfortunately I am well aware that if we get two more years we will be lucky.”
The equipment they are waiting on will assist Mr Puehringer to use less muscles in and outside the house.
“In Mark’s case, every muscle he uses he loses as they never rebuild,” she said.
“The other side of it is that he feels they are not respecting his wishes.
“He is 44 years of age and does not want other people coming in and assisting him – he feels very embarrassed.
“I am fully qualified (certified disability 4 worker). We don’t see why he cannot choose the person that he would like to employ which happens to be me – it’s very frustrating.
“I don’t want to plan to be on the pension for the rest of my life but if we weren’t married I would be entitled to be receiving an income – I feel like that it’s a bit of a joke.”
She emphasises that money is not the primary concern, rather improving her husband’s comfortability.
“Our first plan is only valid for six months which ends in September, so I will have several more plans before we even get the first equipment budget plan,” she said.
“If we did employ someone other than I, they would have to be 24/7 on call as some morning he’s up at 2am and some mornings at 10am.
“I’m only asking for four hours a day of which I do above and beyond what they call normal ‘life duties’.”