Jonny Wilkinson: Increase in funding for family carers for ill or disabled welcome, but ...

COMMENT:

When I was 18 years old I could not wait to leave home. I was off to Auckland University with my friend Greg, without a backward look. Back then in the '80s we seemed to leave home a lot earlier in the piece than these days. It was our rite of passage, compared with the current trend of lingering with one's parents, that kids seem drawn to do, these days.

This week the Prime Minister announced increases of funding and changes in legislation that will fund partners, spouses and family members to look after their ill or disabled family members.

This has been a long time coming. The Government started to fund family members in 2013, after a landmark judgment of the Human Rights Review Tribunal and Court of Appeal that held that the Ministry of Health policy at the time, of not paying family caregivers of adult disabled people, was discriminatory.

However, the funding came with a back hander. The new legislation, the Section 4A of the NZ Public Health and Disability Act, which underpins the policy, banned families from challenging the policy in court or with the Human Rights Commission on the grounds of discrimination.

This heavy-handed hushing of people's rights was unprecedented. Unbelievably it's remained in law. The Prime Minister's announcement included a repeal of the law next year.

I welcome the increase in funding that will enable family members to be paid a decent wage and the return of the rights of disabled people and their families, to take the government to court, if they see fit.

But I feel there is a piece of dialogue missing in the discussion. After years of families battling through the court systems to be recognised and remunerated for looking after their adult sons and/ or daughters, no one has raised the appropriateness of adults living with their parents forever and a day.

It's a complex issue sure, but sometimes it's not appropriate for disabled people to live with their parents well into middle-aged life.

Sometimes disabled adults with high needs need to be given the opportunity to live outside their family home, with the right support.

Through my work in providing advocacy services, I have often seen co-dependent relationships form between disabled adults and their parents.

I have seen financial dependency on the disabled family member as a source of income - even financial abuse. This is generally the extreme thankfully, and most parents simply sacrifice themselves for their children to have a decent quality of life.

Sadly, though, there has more often than not been no attention to what happens when parents are just too old to provide support for their sons and daughters.

Suddenly things can turn to custard and no forward planning has been done for an alternative life outside the parental home.

Sometimes parents can be a significant disabling factor for a disabled person. But none of these unpleasant realities were mentioned in the elongated scrap over whether or not family members should be funded or not.

Disabled people, no matter how complex their needs are, should have some control and choice of where they live and have the option of life outside the family home.

Having said this, we are currently blessed by the presence of my daughter, son-in-law and mokopuna, as they have very recently moved back from Brisbane into our house. They are full of understandable enthusiasm about their plans to move into their own whare soon, so it will be a relatively short and sweet intra-dependency which I intend to thoroughly enjoy!

• Jonny Wilkinson is the CEO of Tiaho Trust - Disability A Matter of Perception, a Whangārei-based disability advocacy organisation.