Merepeka Raukawa-Tait: Victory for carer parents

The parents of intellectually handicapped children, cared for at home for years, have won a long battle with the Government.

The Court of Appeal ruled in their favour. The parents always believed they were discriminated against, wanted to care for their children, many of whom are now adults, at home. They felt they would provide the best care.

But they were up against a system that for more than 50 years determined that a child with an intellectual disability was better off in care provided by the state so parents had the opportunity to just "get on" with their lives, leaving the child's welfare to others. These institutions were government funded and many older people with intellectual disabilities now in residential care came from these institutions when they finally closed.

More recently families who have cared for their children at home questioned "why can't we receive government funding, similar to that given to a residential service provider, to help us?". They needed the financial help and felt they were entitled to some relief. They won their court case and what happens next is currently being worked out with the Ministry of Health.

Deciding to care for a child with an intellectual disability at home is never a decision taken lightly. It will affect the whole family and finances will be stretched. Families that made the decision years ago are still caring for their children, now adults.

The parents continue this loving care and support role even though they themselves are now getting on in years. Their request for some financial relief went unheeded for years. It would have made all the difference to their lives and made a demanding job a little easier.

The argument was always if government can pay an outsider to provide support services why not the immediate family? Some families saw it as their duty of care and made a lifetime commitment to provide the 24-hour care and support required.

Since the deinstitutionalising of residential care the Government has funded approved service providers. They provide accommodation, day services and on going support for people with an intellectual disability. I believe the families who care for their son or daughter at home have only ever wanted some financial relief, a little help, so that their own limited financial resources could be supplemented by assistance provided by the government.

Families try to do the very best they can but the reality is that quality care takes money and families just don't have enough. There is relief and respite care at times required so parents can have a break. Additional medical, nutritional and personal care supplies can be costly too. Modifications to the family home may be needed and while some financial assistance is provided in this area, families tell me it is a continuous struggle to make ends meet. They say they have difficulty keeping their heads above water financially. Having struggled for years these families have lived in hope that one day the Government would listen.

They are deserving of financial support. Keeping a son or daughter at home is a cheaper option for the Government so why did it take so long for them to listen? And only because these families never gave up and took their case to the NZ Court of Appeal.

Their recent win; the Court agreed they had been discriminated against, is the end of a long battle. It should never have come to this.

There are families we know that could not cope with a child with an intellectual disability, who will eventually grow into an adult, living at home. But the families who want their son or daughter at home as part of their family, are prepared to do the hard work required. They should never be put in the situation where it is made more difficult to undertake that role because they receive no financial help from the government.

When the Government prefers to pay a service provider, rather than assist family to provide the same care, it is condemning the family to live life with very limited financial resources. The whole family bears the cost of this short sighted decision.

The potential to live and experience life to the fullest is curtailed for all family members, not just the son or daughter with intellectual disability.