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CHRISTCHURCH MAIL, SEPTEMBER 27, 2012
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Caring for a special
needs adult is 24/7
By ABBIE NAPIER
CARE QUALITY: Gae Neame with her daughter Camille at The Chris Ruth Centre in Hoon Hay.
GAE NEAME cared for her
daughter Camille for over 30
years and said the older she got,
the harder it became.
Camille was born severely
physically disabled, and has the
intellectual age of a 6-month-
old. Her care is a fulltime job.
New Brighton s Richard Bel-
ton cares for his autistic son,
Tim, now in his 30s.
He said the Government pol-
icy not to pay family carers was
These parents are two of hun-
dreds of people in Christchurch
caring for loved ones well into
Camille, now 32, was trans-
ferred to a residential fulltime
care facility almost two years
You just get very tired, to be
honest, Gae said. It took me
more than two years to make
the decision to put her in resi-
Caring for Camille was a lot
easier when Gae was younger,
but age made it more difficult.
They get older, you get older
too. In the last 12 months or so
I needed my husband to lift her
with me, she just got too heavy
Richard said Tim s autism
meant he dealt with great frus-
tration which could sometimes
He is a strong man now, and
his meltdowns were a danger to
life, limb and property, he said.
He had a fulltime carer at
one stage, with back up. At
home his care is cheaper and it
is of better quality by far.
The Chris Ruth Centre is a
lifeline for Tim.
Tim needs routine and struc-
ture. We organise the day the
night before so he knows what
will be happening, Richard
Doing things with others is
really important and we try to
facilitate that as much as poss-
The Ministry of Health pilot
programme could see Tim able
to set goals for himself, giving
him more independence.
By ABBIE NAPIER
A CHRISTCHURCH care provider says gov-
ernment support for adult special needs care
is absolutely pathetic and family carers
should be paid for the sacrifices they make.
Earlier this year the High Court ruled the
Ministry of Health policy against paying fam-
ily members to care for disabled relatives was
The decision could affect up to 30,000 fam-
ilies nationwide, with many of them being
The Chris Ruth Centre in Hoon Hay offers
day care programmes for very high needs
people aged 21. Its roll has trebled in seven
Chief executive Richard Belton said look-
ing after a severely disabled family member
at home was an intense commitment which
needed to be recognised by the powers that
If you re caring for your child as an adult,
or another family member, you re giving up
quite a lot. It s a 24/7 role. Some kind of
payment for carers seems fair and reason-
able. It s long overdue, he said.
Mr Belton s son is autistic and requires
home care when not visiting the centre dur-
ing the day.
The Government had previously decided
against paying family carers, because cost
estimates ranged from $17 million to $593
Parents of disabled children could find
them living at home well beyond the usual 18
years, and often one parent had to devote
their life to the adult child s care.
When you have something like this full-
time, social networks break down, and sup-
port gradually disappears.
Mr Belton said the use of day care pro-
grammes was an important relief for famil-
ies. But since 1999 day programmes had only
seen a three per cent increase in funding -- 10
times less than the rate of inflation.
Effectively there has been a funding cut
because the funding has not grown with
The quality of care will reflect the level of
funding. It s absolutely pathetic -- existing
services cost more, leaving very little for
Mr Belton said a Ministry of Health pro-
gramme could be trialled in Christchurch.
The programme would be a huge step in
improving the lives of special needs adults,
but a lot more funding would be needed.
Disabled care has never won or lost an
election, and it never will.
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