Carer's campaign: Angela and Gilly'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.

Gilly and Angela Hart, Christchurch.

Angela's story

I came to see New Zealand when I was 20, with some friends. I wasn't intending to stay, but I did. I got married and had two children - Gilly - and her brother.

My marriage later failed and we were divorced in 2000. Now it's just the two of us, though my son helps where he can.

Gilly was diagnosed with muscular dystrophy when she was 2. We had issues right from the start, for example Gilly wasn't allowed to go to the local kindergarten, even though at that stage she didn't need any extra support.

In 2008, Gilly became really unwell with pancreatitis. The treatment - which was starvation and bed rest- really laid her low. She wasn't allowed much food by mouth for some weeks, and then she was fed by nasal tube. She spent a couple of months in hospital followed by a stint in rehab for physiotherapy. But ultimately when she did come home, she needed 24-hour care. Before this serious illness Gilly only used a wheelchair outside, she could manage her needs at home herself. But afterwards she needed help with everything. And she needed a wheelchair to get around, and couldn't transfer herself into or out of it.

Before Gilly went into hospital I had a fulltime job but when she was admitted, I went with her. She needed more help than the nurses could provide. I stayed with her in hospital to ensure her needs were met and she was cared for safely. Looking after a disabled person with a life-threatening illness requires knowledge of the specific disability support needs as well as the usual nursing experience. A person like Gilly with a complex set of impairments resulting from one of the rarest types of muscular dystrophy is an unknown quantity for nursing staff, who are already busy and simply don't have the time to figure out what is needed or the time to provide it on top of their usual workload. And if you are seriously unwell, you are not really able to provide much information, even if the nurses are able to listen to you.

My work gave me a year's unpaid leave but after that, when Gilly was still needing 24/7 care I felt I had to resign. I was eligible for a caregivers' benefit- a subset of the DPB at the time. So we suddenly went from something like $70,000 a year with a car and cellphone and internet to $250 a week. We managed on that, just. After a while we developed maintenance issues around our house that I couldn't afford to tackle, like the wheelchair ramp that was rotting.

And it's a benefit, so it's not being paid for the work that you do.

When the government brought in funded family care we applied. It took four months to get approval, and so much extra stress.

Angela Hart and her daughter Gilly. Photo / Martin Hunter

Our NASC (Needs Assessment and Service Co-ordination agency contracted by the Ministry of Health to manage disability support allocation and funding) agreed we were eligible, then said we weren't, then said we were again. If we hadn't been absolutely sure that we are, we might not have argued. And we were audited monthly for the first 3 months. And it can be stopped at short notice. And they want you to have a second family member to fill in for annual leave or illness of the main family carer which we simply don't have.

Also, throughout this time, our NASC kept telling us that if I couldn't manage Gilly at home, the only alternative was residential care. Residential care is likely to be a death sentence in her case, because managing her health is complex. Even if it wasn't, it is unacceptable to Gilly to be obliged to give up her freedom.

So there were some hoops to jump through. But since early 2014 I've been getting paid 40 hours under FFC at minimum wage. Even though the hours Gilly needs are more like three times that - it has helped. Problems which could not previously be addressed because of limited income have been attended to. Things like faulty appliances, safe access to the house and safe flooring. We've been able to get out to social and recreational activities, which we couldn't afford to do before. We were isolated because we were very poor. We're still poor, but much better off than before.

But really, Funded Family Care is a cheap and nasty system. It's no wonder there are only 300 or so families getting it. The process to get it is difficult and degrading, and then you are likely to get only a few hours paid, when your Needs Assessment and Service Co-ordination agency makes its decision on what your needs are. The decision making is not transparent, there is no independent appeal process and you are expected to be grateful.

The Health and Disability Amendment Act 2013 removed the right to challenge Funded Family Care decisions in court or with the Human Rights Commission or Human Rights Review Tribunal, so when a poor decision is made, it is the family and the disabled person who must live with the consequences.

The legislation has permitted a policy which continues to discriminate against family caregivers.

We want them to fix the system so that it's fair. I know that fair word is probably overused. Funded Family Care excludes partners and spouses - why? It excludes people who are assessed by the NASC as not "high needs and complex", so you can have people who still need a lot of support totally excluded. Disabled people under 18 are excluded. And now because of pay equity there's a huge disparity between family carers and other caregivers. Any other caregiver gets at least $19 per hour, that's the starting rate. Family carers on Funded Family Care receive minimum wage, $15.75 an hour, regardless of their experience, qualifications, or the complexity of the support they provide.

I would like the disability support system to be fairer, and part of that would be paying family carers on the same basis as anyone else. Part of it would be enabling people living with disabilities to choose to have or not to have a family carer, depending on what they want and what works best for the individual person.

Gilly's story

I was diagnosed with muscular dystrophy when I was 2. The doctor said I wouldn't see age 20. But here I am at 37, still going.

I survived the physically handicapped units of the 1980s, managing to get some kind of education mainly because Mum pushed for me to be mainstreamed. I required no extra support at the time, though did receive a lot of physiotherapy they claimed I needed, much of which was counterproductive and all of which cost me time in class actually learning.

I was lucky enough to spend my high school years at a school without a special unit, and graduated early. I had toyed with the idea of going to Otago to study but I was too young. So I did some papers at Massey and later enrolled at the University of Auckland, ultimately ending up with an MA (Hons).

I had some career ideas but those were wiped when I got pancreatitis. I'm not in danger of having a relapse now, but after I recovered I was extremely weak with no visible muscle mass. It was weeks before I could even sit up unsupported for more than a few minutes. Muscular dystrophy makes it very hard to get back any muscle function you have lost. Since then I have also picked up a breathing condition and a heart condition.

Angela Hart and her daughter Gilly. Photo / Martin Hunter

Since becoming sick, I've had to give up a few hobbies (cross-stitch, calligraphy, playing the mandolin) because my muscles were no longer co-operating, and I've given up collecting vintage fountain pens because funds no longer permit. I knit, which is something I can still do with my elbows propped on a padded table of the right height. I make tops, shawls, socks, and hats. I'm also a fairly-committed Pokemon GO player, though of course I rely on others to push my wheelchair for the GOing part.

That's the only thing I have outside caregivers for. I don't trust anyone else to do the intimate work. Even transferring me requires special techniques that someone would have to be taught and then practise repeatedly. No caregiver, no matter how highly-trained, can simply walk in and know how to take care of me. Nor are these tasks I can just talk someone through--that would be like trying to talk some random person through a complicated gymnastics routine while she attempted it! My mother is the only person I feel safe with when it comes to transfers.

I have a dog called Piper. She was born while I was in hospital with pancreatitis, and is now nine. She sleeps on or in my bed, depending how cold it is. I've never been able to pick her up (which is part of the reason we bonded, actually, since she hates being picked up), but patting her and playing with her is great for getting me to use my arms, and the need to walk her is great for getting me out of the house.

When we applied for Funded Family Care, that meant having a needs assessment. That meant questions about the support I need and the time taken to provide those supports - like toileting, showering, dressing, grooming, medication, weight shifting.

I question whether it is necessary. I look at some of my friends who have broken their necks and get ACC - they're entitled to 24/7 care. They need a caregiver all the time and are entitled to it. I think you should be able to look at most disabled people and say "this person needs a caregiver all of the time, most of the time, or some of the time", and then fund according to those bands. I don't think it should go into how many minutes someone needs to be toileted. That you're allowed a bowel motion twice a day and that requires two mins of caregiver input. That's demeaning. That's really demeaning.

What I would like the Government to do is what they should have done in the first place when the Atkinson ruling came out. All they had to do was to remove the policy that said "family members can't be paid". And then if they were suitable they could be paid in the normal way by a healthcare agency or any other existing mechanism. That would have stopped the discrimination. Instead they came up with new policies that just discriminate in new ways.

Also an apology would be nice. For them to say, we have been discriminating and we are sorry. A genuine apology.