IHC welcomes the Government’s move to clarify the role
of Disability Support Services (DSS), which will provide
certainty for families and disabled people. However, any
reform must also recognise the enormous financial and
emotional burden carried by families supporting
intellectually disabled family members.
The Government
this week introduced legislation clarifying that the Crown
is not the employer of family carers, following last
year’s Supreme Court decision that found two parents
caring fulltime for their disabled children were government
employees.
IHC says the key issue is not what
mechanism government uses to recognise carers, but whether
families receive meaningful support.
“Families and
whānau have always carried the bulk of care and support for
intellectually disabled people,” says IHC Director of
Advocacy Tania Thomas.
“Disabled people and their
families are already acutely aware that they are expected to
step in first. The real issue is whether the state
adequately recognises the economic and social cost of that
care.”
IHC said many parents leave paid work entirely
or reduce their hours significantly to care for disabled
children, often for decades, pushing families into long-term
hardship and poverty.
“It is incredibly common for a
parent to leave full-time employment to provide care for a
child with an intellectual disability. That loss of income
can last 20 years or more.”
“Our research shows people
with intellectual disability and their families are among
the poorest groups in New Zealand, and that is not random.
It reflects a system that relies heavily on unpaid family
care while providing inadequate support.”
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IHC research
from 2025 shows:
- People with intellectual
disability are twice as likely to experience hardship up to
age 39, and almost three times more likely between ages 40
and 64. - Nearly half of people with intellectual
disability would be unable to pay an unavoidable bill within
a month without borrowing. - People with intellectual
disability are more than twice as likely to go without
heating because of cost. - Children with intellectual
disability are over six times more likely to miss out on
school events because of cost. - Families with an
intellectually disabled family member are significantly more
likely to live in damp, crowded, or insecure housing and to
rely on social housing and hardship grants.
IHC
says the hardship experienced by families is compounded by
the complexity of the disability support
system.
“Getting support often becomes a full-time job
in itself,” Tania says.
“Families repeatedly told us
they faced exhausting application processes, delays in
accessing support, and constant pressure to prove what their
child cannot do.”
One parent interviewed as part of
last year’s research said balancing full-time employment
alongside caring responsibilities as “like running a small
business just for his care”.
IHC says: while clearer
legislation may help explain the purpose of DSS, it should
not be used to minimise the state’s responsibility to
ensure disabled people and their families can live ordinary
lives.
“When adequate support is unavailable, the cost
does not disappear – it is simply transferred onto families,
particularly mothers, who often sacrifice employment,
income, health, and financial security to provide
care.”
“The question should not just be about who
employs carers. It should also be whether New Zealand is
willing to properly support the families who hold the
disability support system
together.”
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