Disability Support Services Bill: Blind Low Vision NZ welcomes changes but says more work is needed

Blind Low Vision NZ welcomes changes to the Government’s Disability Support Services Bill following the Select Committee process, but says more work is needed to ensure the legislation protects the rights, choice and dignity of disabled people.

Thousands of people across the disability community made submissions on the Bill, including people who are blind, deafblind, or have low vision, disabled people, whānau and organisations working across the disability sector.

Two changes are particularly significant.

The first changes the way the Bill describes the role of family and whānau in providing care. The Bill no longer states that family and whānau should be the first source of support before Government-funded support is available. Instead, Clause 8 says families are expected to “contribute to care”.

The second requires the Government to consult with members of the disability community before making significant changes to disability support services.

Blind Low Vision NZ CE Andrea Midgen says these changes are a positive step, but the Bill still needs to go further.

We welcome greater clarity around disability support services, but clarity without rights, review and accessible processes is not enough.

Family and whānau provide an enormous amount of care and support. That contribution should be recognised, while also recognising that not every family member can provide care, and for some people family support may not be safe or appropriate.”

Recognising the role and cost of family care

Blind Low Vision NZ welcomes the move away from wording that placed family and whānau as the first point of support.

However, the organisation says Clause 8 should go further. There is a significant economic cost when family members take on unpaid or low-paid care. People may reduce their hours, turn down employment opportunities or leave the paid workforce altogether to provide care.

This can reduce household income and contribute to poverty and inequity for disabled people and their families.
At the same time, family caregivers provide a huge amount of support that would otherwise place greater pressure on Government-funded disability support services and the wider not-for-profit sector.

Blind Low Vision NZ says funding arrangements need to recognise this contribution and the real cost of providing care.

Clause 8 must also recognise that not all family members can provide support or care, and that family support is not always safe or appropriate.

The Bill’s changes around flexible funding are therefore welcome. Clause 4 now includes flexible funding within the definition of disability support services.

“Families make a significant contribution to the disability support system every day,” Andrea Midgen says.

“We need to recognise the value of that care without assuming it will always be available or placing the financial burden of care on families who may already be under significant pressure.”

A requirement to consult the disability community

Blind Low Vision NZ also welcomes the addition of provisions requiring consultation with members of the disability community before significant changes are made to disability support services.

This is an important step towards ensuring disabled people have a meaningful say in decisions that affect their lives.

However, Blind Low Vision NZ says consultation must be genuine to be effective.

People need enough time to understand proposed changes, seek advice, participate in accessible ways and provide meaningful feedback. There also needs to be confidence that feedback will be considered and can influence decisions.

The organisation believes the legislation should set clear expectations for what meaningful consultation looks like, including appropriate timeframes.

“This Bill has shown us why meaningful consultation matters,” Andrea says.

“People across the disability community took the time to make submissions and share their experiences. The Government has responded to some of those concerns.

“We now need to make sure meaningful consultation becomes a standard part of how significant changes to disability support services are developed in the future.”

Choice, dignity and safety

Blind Low Vision NZ also welcomes a change to Clause 8 that requires decisions about a person’s disability support to take into account their choice, preferences, safety, dignity and needs.

This change reflects the Enabling Good Lives principles and aligns with Blind Low Vision NZ’s mission to support people who are blind, deafblind, or have low vision to live the life they choose.

Disability support should enable people to have choice and control over their lives, rather than simply determine what support is available within a fixed system.

More work is needed

Blind Low Vision NZ supports the establishment of a clear legislative framework for disability support services.

A good framework can provide greater consistency, transparency and accountability. However, it must also protect the rights, autonomy and participation of disabled people.

The organisation is also concerned that it took thousands of submissions and sustained advocacy from the disability community to secure changes, despite the Ministry of Social Development’s regulatory impact analysis identifying concerns about the Bill’s consistency with the New Zealand Bill of Rights Act.

Blind Low Vision NZ will continue to advocate for a disability support system that is fair, transparent and sustainable, while putting the rights, dignity, choice and participation of disabled people at its centre.