‘Punished for trying to lead a normal life’
Marrying her high-school sweetheart will cost a disabled Christchurch woman four hours of weekly household support she depends on ‘‘to live life’’.
Amy McMullan, 36, has a rare inherited neuromuscular disease which causes progressive and severe muscle weakness throughout her body.
She is confined to a power chair, is unable to work and requires a personal care assistant to shower and dress her each day.
McMullan’s silver lining is a loving relationship with fiance Peter Bradley who moved in to her accessible unit in August last year. ‘‘I’d be lost without him.’’
The pair are preparing married on February 17.
Bradley, who has metatropic dysplasia, or dwarfism, uses a powered wheelchair.
He earns about $55,000 as a centre operator, which takes couple’s combined income over the $41,327 limit for a Community Services Card.
The card entitles some users to subsidised home help but the criteria is income-based, rather than needs-based.
When they started living together the rent on McMullan’s Housing New Zealand unit increased from $65 to $255 per week and she stopped receiving a benefit.
McMullan realised she would no longer be eligible for the card and home help.
‘‘Pete and I had talked about it and we were like, we’re going to have to manage, and then I thought, I’m going to lose my home help too and it was, ‘crap’.’’
She said they felt like they were being punished for just trying to live a normal life.
‘‘We were born with our disabilities, we realise to get call the that and the Government is awesome at what support they give us but to give us something and then take it away all because we are trying to live a normal life, it just puts added pressure on us.’’
At a cost of $80-$120 a week, a home help assistant completes household chores that are physically impossible for McMullan. She cannot vacuum, unpack shopping or clean the bathroom.
Hanging out a load of washing takes her at least 45 minutes and leaves her exhausted for the rest of the day.
The stress caused by these activities on McMullan’s already depleted muscles would cause them to deteriorate more rapidly.
‘‘Home help gives me the energy to live life,’’ McMullan said.
Green Party disability spokeswoman MP Mojo Mathers said it was ridiculous to expect a single income to cover all the extra costs. ‘‘Amy’s disabilities haven’t gone away just because their income has pushed them over the threshold for a Community Services Card.’’
Disability issues Minister Nicky Wagner said she could not comment on McMullan and Bradley’s situation but her office would be happy to check McMullan is receiving the appropriate services.
She said if McMullan required home help for medical reasons she may be eligible for it as a disability support service which is funded by the Ministry of Health.
Subsidised support services for disabled people were not determined by income alone, Wagner said.
‘‘It wouldn’t matter if you were a multi-millionaire, if you had cerebral palsy and you need people to look after you we would give you that disability service.’’ Home help gives me the energy to live life.