This week I hosted a forum at Parliament for a very challenging campaign. I invited all MPs, but only the Green MPs supported it. Maybe the others were all very busy, but many from Labour and National seem to find it hard to meet the families who have called for their help in vain for the past ten years. The forum was for people with disabilities and their families who wish to pay a family member as they do other caregivers.
It was supported by the Human Rights Commission and the Carers Alliance and a number of people from the disability activist sector also attended. Three families who are plaintiffs against the Government spoke about their situation. Cliff Robinson has been caring for his two intellectually disabled family members for forty years; Lynda’s Stoneham is fighting for her adult daughter Kelly to be able to live with her because that is what Kelly wants. Gill Bransgrove and her adult daughter Jesse Raine who needs 24 hour medical support are overwhelmed by a lifelong fight for Jesse’s right to pay her mother, a registered nurse, to care for her at home
These families won their case for payment as carers before the Human Rights Tribunal and the High Court but the Ministry of Health are still planning to appeal further.
The issue has complexities and is controversial in the disability communities. People ask valid questions like “how to sack Mum or dad if it’s not working for you?” or “won’t everyone helping family members expect to be paid?” Everyone I have spoken with agrees there must be independent advocacy for the person at the heart of the matter, and that auditing all carers including family members is vital. Some worry about the effect on families of an economic relationships, but this is hardly a new problem. Many families employ family members in business and many relationships have complex economic dimensions. Safeguards are vital but justice demands that family members who are carers should be paid like other people.
Some people want to live independently from their families, which is their human right. But so too is the right to choose your family to be part of your care team.
The Government quotes all kinds of fiscal and structural reasons why we cannot find a fair and safe way to address this issue. They have lost all the arguments in court. I am calling on them to drop the appeal they say they will lodge on April. We can find more creative ways to address this issue than a blanket “no” which continues the relentless exploitation of these families.