Carer's campaign: Peter and Rosemary's story

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.

Rosemary McDonald, 57, and Peter Ray, 67

Peter's story

I had my accident in 1970, just before my 21st birthday. We were out waterskiing and I dived into the lake. I came to lying face down and could only move my head. It was just before my 21st birthday.

My employer held my job for me. For the next 32 years I worked eight hours a day, five days a week.

I had to live in Crippled Children's Society homes until I was 33 years old as I needed 24/7 support in an accessible environment. I could have moved back to my parents' home in Te Aroha, but there was no work for me there, and I would have been on a benefit.

In the early 1980s I took the plunge and bought my own modest home. Because I was working fulltime, I did not qualify for home-based disability funding. The only solution was to take in flatmates who would then do my cares in exchange for board. Surprise, surprise, this did not work out very well and did not last very long. My darkest years.

Eventually, in desperation, I asked my GP to send me back to hospital where there were nurses and orderlies to do my necessary personal care and to do transfers. A meeting was called and the hospital said, "He's not sick, he's not our responsibility".

Disability Support said, "He's working fulltime, he's not our responsibility". I left that meeting in tears. I felt totally humiliated, and hated having to beg for the help I needed to stay alive. I have hated such meetings - those to do with the supports I need - ever since that day. I felt like I was being punished for working and trying to live like an ordinary person.

In 1986, the Attendant Care scheme came in, which allowed funding for home-based care and was not means- or asset-tested. Through an agency I was allocated 35 hours a week, for which I was grateful, but the number of hours was woefully inadequate to keep me safe.

Rosemary was one of my team of carers. Over time, a relationship developed between us. In 1999 I moved out of my home and moved in with Rosemary and her three children.

Peter Ray and Rosemary McDonald with their motorhome in Kaitaia. Photo / Doug Sherring

Having Rosemary as my fulltime carer has been the most positive thing that could have happened to me. It took away the worry and insecurity of not having 24/7 support.To have someone who cared about me doing these tasks made all the difference in the world.

I was aware that Rosemary was doing on her own what a team had done before, but I assumed that if this didn't work out for whatever reason I could phone the needs assessment agency and outside carers would be sent. When this was tested in late 2002, it proved not to be the case. What was a positive arrangement made out of choice was now the only option. If Rosemary could not [look after me] the alternative was residential care. I felt guilty that there was an extra burden now on Rosemary, that there was no choice, and it seemed that home-based care provision had gone backwards in the three years since 1999.

I asked if I could pay Rosemary as this was the best for me - having her as my carer - but the answer was no.

The hardest part has been on Rosemary as the care she provides is not as worthwhile or is less valuable than someone who is getting paid.

I was made redundant in 2002. Initially I was sad, but Rosemary and I had volunteered to be foster parents and had just been accepted and completed the training. We had over 60 children stay in our home for varying amount of times.

However, we found ourselves having to draw on savings more and more as the cost of living increased, but the benefit did not keep pace. There were increasing expenses due to my physical care needs: mostly purchasing items to prevent pressure sores and to supplement the limited supplies provided by the DHB to manage my bowel and bladder care. Our financial position was becoming unsustainable despite our economies and we were beginning to wonder how other couples in our situation were managing.

We have a small house bus, so we made an effort to travel more and try to meet others in our situation. What we discovered was that others had arrangements so the spouse, partner or other family member was being paid as the carer despite the policy saying it was not allowed.

These deals were either approved by the Ministry of Health or through some "backdoor" deal through a contracted provider or through individualised funding. We had heard about this, but thought they were isolated instances. We found that these deals seemed to be the norm rather than the exception. I felt stupid that our openness and honesty and not wanting to lie had cost us financially.

In late 2010 we finally had to admit defeat at keeping out of debt and took out a mortgage on the house to pay for sudden unexpected repairs. Having to do this was the beginning of the end for me.

The final straw was the amendment to the Public Health and Disability Act on May 17, 2013, which took away any hope that fairness and justice would prevail. We were on our own, we were at the end of the line, all possible options were gone and there was nowhere or no one to turn to.

I shouldn't have to battle like this, and this whole thing has made me feel more disabled than at any other time since I broke my neck in 1970.

I don't trust the Ministry of Health or its agents like the NASC (Needs Assessment Service Coordination agencies). They don't care, and my hope is that I die before Rosemary so I don't have to deal with those people ever again.

If there's ever going to be a solution they need to repeal that legislation. And they need the disabled onboard to design a better system.

A lot of people can't speak for themselves. This is our chance.