What the families really want is a law change, and a fairer policy, so no one else has to go through what they have endured. Video / Chris Tarpey
For almost 20 years, families of the severely disabled have been fighting to look after their loved ones at home, and to be paid for it. Some of those families are sharing their stories to advocate for a law change, and a fairer policy for all.
Sushila and Royd Butt, parents of Ashneel, 26, and Alisha, 23
Sushila's story
We have two adult children, Ashneel and Alisha, who have what's called an unbalanced translocation of chromosome, and also epilepsy, and development delay. They have the mental ages of 2 and 3.
They need everything done for them, including feeding, clothing, and bathing. They also require constant supervision because they have life-threatening seizures. So they need 24/7 care.
Before Alisha was prescribed medical marijuana two years ago, Alisha was having seizures and was spending two or three nights a week in hospital. Life was getting very difficult for us. I had to be away all night. The seizures are very stressful.
Sushila Butt and her daughter Alisha. Photo / Doug Sherring
At that time, we could only sleep for ten minutes, and then maybe an hour. We would have to get up and read to her or play with her. It went all night like that.
It was getting too much. I had several breakdowns. Then I went to mental health and they put me on depression pills.
Before my life was different. Before the children. But now if they aren't home, I miss them. Our days are usually the same, the children have to have it the same all the time.
Alisha gets up at 5am and listens to her music. She's the rebel in the family, she likes to play her music loud. Her favourite is Barney, she likes to listen to it in English and Hebrew. We don't know why she likes that language but she does.
Sushila Butt and her son Ashneel at home. Photo /Doug Sherring
Asheel gets up later. He likes going to see aeroplanes. He likes collecting videos although he doesn't watch them. He's very placid, but he can sometimes get very anxious. If he's going to go out he has to know he's going to come home. He has to have two people when out in the community because he's a big strong boy.
We get quite a lot of support now. In 2002 we only had four hours, but now the support workers come every week day. We also get Funded Family Care, sine 2014. We had to fight and fight and fight. You're supposed to only have a needs assessment once every three years, but we made them come back again and again, we had three assessments in two years. Now we finally get the support we need.
I don't think we should still be fighting. It's so frustrating. We've had three email addresses blocked by Parliament because we keep sending emails.
I know some people will think it's just about money but we don't care. We just want to be treated fairly, to have equal pay. And we want the law overturned.
Royd's story
For those who haven't seen a seizure before, to see Alisha when she has one would be scary. Her life is on the line every 24 hours. Especially before she had medical marijuana it was very difficult for us - and for her. She had no sleep, she was drained of energy and couldn't function.
We have a small horticultural business so I work in the day, but when Sushila had depression I also stayed up at night with Alisha so Sushila could have some rest. Now I have insomnia. Even though she's sleeping better now I'm still awake. It's like internal clock is broken. I only get four to five hours a night.
Royd Butt and his son Ashneel at home. Photo / Doug Sherring
Sushila fights very hard for what she's achieved for our children. I've seen her burning the midnight oil and then getting up again the next day to carry on.
Unless you know how to fight and know what you'r entitlements are they won't give you what you deserve.
Because you have a disabled child they think they can do whatever they like. They think they can treat you like dirt. There is no dignity. The whole assessment process is offensive. Invasive. Counting the minutes for toileting. They wouldn't like it done to them.
The government are the villains. They make out they care about us but they don't. Labour and Greens were criticising National over that law but now they have the chance they don't do anything. If they were honest they would say they don't care about us, or the elderly, or the children that are disabled. They make out they are concerned but they are not.
Some people will think it's about money. But we are not being greedy we are just asking for what we are entitled to.
