The price of care

May 25, 2018

The price of care

Wheelchair user and Auckland high school teacher Red Nicholson. Photo: Supplied.

Wheelchair user and Auckland high school teacher Red Nicholson receives individualised funding from the Ministry of Health to pay for support staff and other expenses.

However, Mr. Nicholson says if he had the choice he would choose to use some of the money to pay his spouse who helps out.

“If [funding] allowed us to pay family members it would just make our lives more straightforward.”

According to the Ministry of Health website, Funded Family Care is for the disabled to employ family to provide them with support.

Government policy states that families have a primary responsibility to take care of their members’ wellbeing and which includes those with disabilities.

Historically, people have never been paid for providing care for their family members.

Mr. Nicholson believes the government rely on what they like to call “natural support”, which is if you are living with your spouse or family member, there is an expectation and responsibility to commit yourself to assisting them.

“I understand that on a true support level, but it’s got to the point where the government uses ‘natural support’ as a way of getting out of paying people for the huge amount of work that they do.”

In the last few years a court case was won by a group of parents who requested payment for looking after their disabled child.

However, the result of the ruling meant they can only receive minimum wage and be paid for no more than a select number of hours a week.

Mr. Nicholson says it was a small win, but overall very discriminative.

Caregiver Sarah McIntosh says it’s unfair that immediate family members who fulfil the same role as her are not getting paid because of their relation to who they’re caring for.

“A lot of the time, depending on how high on the spectrum their disability is, a parent or partner has to make it their full-time job to care for them.

“They love them and that’s why they do it.”

Mr Nicholson says by paying his wife it would be saving the government a lot of money.

“The money that I receive from the government to pay a caregiver, I can’t use so it just ends up going back to the government at the end of the year.

“My personal needs are kind of seperate to all of that, so when [my wife] steps in to fill that role, I think it’s only fair that she is acknowledged for that work in a small way.”

Mr. Nicholson says one of the great things about paying people to do this work is since it is a job, you don’t have to feel sorry or guilty about it.

“Whereas when your wife is doing this for free it really piles on the emotional debt.”

“Disabled people already feel like enough of an inconvenience, let alone when they have to rely on their family members to help them out for free,” says Mr. Nicholson.

“It’s not only about finding someone who can help me get dressed and ready for work. It’s about finding someone who can fit in with our family and our routine and be part of the unit.”

Red’s blog post about Family Funded Care: https://rednicholson.nz/2018/05/18/funded-family-care-why-this-needs-to-happen/

Red’s Twitter: https://twitter.com/rednz?lang=en

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