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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 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."

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."