From 20th to 30th March, DPA ran a survey to find out about how the impact of changes to the Purchasing Rules and funding of Equipment Modification Services (EMS) announced on 18 March 2024 by Whaikaha Ministry of Disabled People.

The survey was open to DPA members, disabled people, and their family and whānau. There were 180 responses.

Level of concern

Most respondents reported a high level of concern with 80% expressing a concern of 7/10 or more and an average level of 8.5/10 of concern expressed.

In addition, most people said they would be affected by the purchasing rules changes, while a significant number said they did not know.

Key themes

Many personal stories were shared by respondents. These were varied and highlight the complexity of the lives of disabled people and their family and whānau.

It’s important to note that the core themes and quotes below are indicative only and do not capture the full impact of the funding changes for disabled people, and their families and whānau.

Many said that their ability to visit family, friends, and be out and about in their community will be reduced.

“I am concerned my support to access rehab activities will be cut, that my ability to manage a meaningful life will be greatly restricted.”

Loss of independence

Many said that not only will they be confined to their home, they will also lose their ability to move around and look after their own personal needs.

“I am worried I will become less independent and need full time support sooner rather than later.”

“EGL has allowed me to contribute fully and not be left behind. With this change we are back to bureaucracy holding the power and the pen”

Poorer health and safety outcomes

For many disabled people and their carers, access to occupational therapy, physiotherapy or massage therapy is needed to maintain a standard of physical wellbeing that cannot be obtained in other ways. Delays in equipment repairs also have significant health impacts.

“I will be affected by the inability to put massages or physio on the respite funding this is the only way that I can continue to work because of neck, head and shoulder pain.”

“We use multiple devices in the home (powerchair, wheelchair, hospital bed) for multiple people. Many of these devices have had breakdowns that require fixing and they are essential items to reduce ambulance callouts and reduce long term hospital stays.”

Loss of ability to purchase, replace or repair needed equipment

The requirement for equipment including aids in sensory requirements for respite, as well as equipment for self-care and movement around the home.

“We do use IF and respite funding for stim toys, audio books, and may no longer be able to do so.”

“Wheelchair is already too small, now the wait will be longer and damage to hips, pressure sores etc will increase.”

Loss of options for carer support and respite care

This included loss of options for disabled parents caring for disabled children, some of whom have support workers so they can care for their own baby. Some disabled people mentioned the importance of their carer being able to access respite and if that is limited then their ability to continue to receive care from their trusted carer is affected.

“My [child] requires high cognitive management alongside personal cares. Residential respite isn't available so we were using [their] carer support to fund high interest weekend activities every two months outside the home. This was a huge break for me and also allowed quality time with my full cares [other child].”

“I'm a disabled mother with a disabled child. Earlier this year we used some of my IF to take my child on holiday to try and make some nice memories for both of us, it was amazing! I used my IF to pay for my carer’s flights and accommodation.”

Concern about mental health and wellbeing

The wellbeing of disabled people is being greatly affected. Many disabled people experience stress and anxiety, which has further been exacerbated by the announcement of funding changes.

“Access to public mental health services is impossible for people with disability-related mental health issues, IF helped to provide privately accessed support for both the struggling disabled person and the struggling carer.”

Thank you

DPA would like to thank to everyone who took the time to answer the survey.

“What happened to ‘nothing about us, without us’?”