Disability Partnership Leader, Peter Wilson, returns to take a hard look at the new Paid Family Carers Bill. He wonders whether the Bill reflects how society sees disability and disabled people.

The recent Paid Family Carers Bill has caused a lot of controversy.

The Bill allows a limited number of disabled people with high needs to pay family carers, but leaves many in the cold, including spouses, people with low and medium needs, and parents caring for children. Family members will be paid at the minimum wage. This is generally less than non-family support workers are paid. More worryingly, the Bill removes the right to legally challenge the government on paid family carers’ policy.

The Bill was passed under urgency with no chance for the public to respond, despite the policies not coming into effect until October. The Bill has been slammed by commentators as unconstitutional and mean spirited.

I will leave the constitutional significance of the Bill to the legal experts. For me, the Bill is linked to how society sees disability. Although, attitudes towards disability and disabled people have improved, I cannot help, but feel that the rights and welfare of disabled people are still not fully respected

As justification for the Bill, the Government claims that if payments were extended to all carers and all disabled adults costs would increase to $65 million a year. Estimating the cost of paying family carers is complicated,  there could even be savings if people switch from service providers to paying family members. The government’s previous estimates of cost were criticised by the courts. The Human Rights Tribunal said that “the financial impact was not likely to be great within the disability sector”.  This view was back by the High Court and the Court of Appeal.

Regardless of what the actual costs are, the Government should have discussed possible issues with disabled people and their allies. The Ministry of Health did hold some initial consultation on policy options, but now we have a Bill passed under urgency and policies developed behind closed doors that are immune to human rights complaints.

On paper we have come a long way in our approach to disability and disabled people. In 2007 New Zealand signed the Convention on the Rights of Persons with Disabilities. This Convention outlines key rights, including that the government closely consults with disabled people when designing legalisation that affects disabled people. The Government did not consult with disabled people on this Bill, despite it having a large effect on disabled people.

My big question is why did the Government think it was okay not to consult?  Is it because the rights of the people most affected, disabled people, are not fully respected by wider society. Did the Government think that after the initial outrage, people would just forget about the Bill?

Unfortunately people have to fight for their rights. Despite all the advances in human rights, the nature of politics means politicians are pulled in many directions at once. They have to balance the expectations of different groups, control spending and keep one eye on elections and their own party. Sometimes they will be tempted to compromise the rights of others to solve a difficult policy challenge or save money.

This is a far bigger risk if you are part of a minority, especially a minority whose voice is not often heard. Disability Commissioner Paul Gibson noted that the Bill was highly unusual in removing the right to legally challenge the government’s new family care policies. Is this because society tolerates more easily the rights of disabled people being violated?

I cannot help, but look at the some of the attitudes in wider society to disability and believe that many people still do not fully respect the rights of disabled people.  Simon Buckingham made some interesting points in his blog about the need for people to recognise the rights of disabled people.

Is it time for disabled people and their allies to take a tougher stand on their rights? Have we become complacent with all the ‘paper gains’ in recent years?   

What as individuals and as groups can we do to ensure society respects and recognises the rights of disabled people? We can all play an important role in ensuring the government respects, protects, and fulfils human rights. As the human rights education manual, Human Rights. YES! says

“Just because human rights law exist does not make human rights a reality in people’s lives.  Positives attitudes and good intentions are not enough either.”

The manual also notes that everyone benefits, when people stand up for their rights.

“Because human rights are common to all people, even an effort by a single individual to assert his or her human rights represents an important initiative on behalf of every person.”

Now we want to hear from you. What do you think about the Paid Family Carers Bill and disability rights? More importantly what action do you plan to take?