Mum pins hopes on being paid as carer
Being paid to care for her 19-year-old disabled son would be a "marvellous help to both our lives", Christchurch mother Andrea Lamont says.
Lamont is the fulltime carer of son Tyler, who has cerebral palsy and uses a wheelchair. He is also visually impaired and autistic.
She described this week's Court of Appeal decision that could mean parents are paid to care for their disabled children as a "huge deal".
Parents had a right to choose who cared for their children, she said.
"Being paid would be a huge help. I think it's wonderful and it would make things a lot easier.Tyler wants to be at home with me."
Caring for her son was at times "like a fulltime job".
"And it's even more than that. Tyler is amazing. He's a wonderful person, but it is exhausting," she said. "I've been getting ill a lot and Tyler often says things like, `Mum, your life would be a lot better if I didn't have a disability'.
"There are a lot of injuries and it's stressful. He's more than 30 kilograms heavier than me, so lifting him and things like that; well, it's really hard work."
Lamont said her son did not like going into respite care and would often return home "distant, angry and emotional".
"What we really need is home help, but it's hard to find and then there are a lot of extra costs," she said.
"You have to pay for the carer's petrol costs. If they go out to dinner, you have to pay. You have to pay for everything."
Before the February 2011 earthquake, Lamont paid people to help around the home, but the staff had to leave to care for their own family and friends, she said.
Health agencies had contacted her after the quakes but she was not offered any practical support.
Service co-ordination group Lifelinks had referred Tyler to the Burwood Spinal Unit for respite care.
"He only goes in once a month and not even that now because he doesn't like it. "He's in a unit with people who can't talk and are a lot older than him, and I just don't think it's suitable."
Lamont and her son receive benefits that give them a weekly income of about $600.
She said she regularly could not afford food and petrol and often "spends hours at Work and Income" pleading for financial help.
RULING HAS 'ETHICAL DILEMMAS'
A landmark court decision that could lead to parents being paid to care for their disabled children could "expose a minefield of issues," a Christchurch parent says.
The Court of Appeal this week ruled parents of disabled children were being discriminated against by not being allowed to be paid carers based on family status.
The case, between the Health Ministry and a small group of parents and two of their adult disabled children, was first lodged in 1999.
The ministry does not pay family members for care provided to their disabled relatives.
The outcome had the potential to affect about 30,000 families who used home-based care, the ministry said.
The case started with a Human Rights Review Tribunal and went to the High Court, and each time the ministry has lost.
Christchurch parents Dennis O'Connor and Fiona Munro have two adult disabled daughters. One has autism and the other has Down syndrome.
Munro said the women, 34 and 38, attended a daycare service four days a week, but she and O'Connor provided care the rest of the time.
"Dennis is retired now - he's 70 - but he used to be the working person and I was the person who stayed at home with the girls."
She said the court decision would "most likely expose a minefield of issues".
"If people are being paid to care for their children, then does that mean the Government is your employer ... you have a job description and have to be evaluated? It's a very difficult topic," she said.
The issue contained "ethical dilemmas". CCS Disability Action chief executive David Matthews said many families struggled to find adequate third-party carers.
"This often results in government officials spending large amounts of time organising complicated and expensive support packages. In some cases, paying a family member to provide care may be the best option," Matthews said.
The last thing the disability sector needed was "further costly legal action".