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.
June Rameka and Maraea Waitoa, Taupo
June's story
My daughter Maraea is 34. She suffers from severe intellectual and mental disabilities, bipolar, autism, and microcephaly. She has complex behaviours such as a low attention span, lack of insight and thought-processing abilities, and she self-harms by pulling her hair. Maraea alsohas fetal alcohol syndrome.
Before Maraea was born, I worked as a shed hand. But afterwards, I was unable to work while also caring for Maraea as her needs required my constant attention and time. I've never been paid to look after her. I'm on the supported living benefit.
I can't leave Maraea alone too long. She starts self-abusing if she doesn't see me around. She screams a lot. Her communication is non-verbal but I can understand her. The clearest way for me to understand what Maraea wants is through her behaviours and actions. If she is hungry, she will bring a can and a can opener. I can also read her eyes well.
It has been a constant struggle to try to get decent caregivers because there weren't enough hours allocated and they were at minimum wage, so I often had to rely on family and friends.
We get more hours of support now, but the system makes it hard for us to look after our kids.
June Rameka (left) gives her daughter Maraea Waitoa a kiss and cuddle at home. Photo / Alan Gibson
On many occasions, it would have been easier for Maraea to go into residential care and for me to go to work so I could earn money and make opportunities for myself. But that was never an option. Even when I put her into respite care she would abuse herself if she didn't see me for long. She would tear her face apart.
When I complained to the ministry about getting more care for Maraea, they thought I did not want her to move into a residential service fulltime because I would lose the income from Maraea. This is not true. I received very little income having Maraea at home and could have earned more if I was working. My main motivation for keeping Maraea at home was because I thought it was in her best interests to do so, and neither of us wanted her to leave home.
Maori don't put their family into residential care. We look after each other. That's our kaupapa.
With the court case we are taking, I'm not worried about the money. I want to get to policy level. That's the purpose. I want to see change in how people are treated. That's my main aim.
