A funding dispute linked to privatisation has cast a shadow over the care of severely disabled people with complex medical needs in NSW.
The NSW government and National Disability Insurance Agency (NDIA) are in dispute over who should pay for vital care at the Summer Hill Accommodation and Respite Centre in Sydney.
This follows the state government’s privatisation of its disability services in 2018.
Summer Hill centre is the state-wide safety net for disabled people with the most difficult and complex medical needs.
The centre permanently accommodates about 20 residents and provides 10 respite beds.
All residents use wheelchairs and have significant communication limitations.
Almost all receive nutrition via a stomach tube and almost half receive palliative care or have end-of-life plans of some kind. Common conditions include osteoporosis, epilepsy and major respiratory problems.
Residents depend on the centre’s specialist nursing staff and services to maximise their participation in the community.
The state Ageing, Disability and Home Care service (ADHC) ran the centre until the government sold it to a not-for-profit agency Achieve Australia, which took control in November.
Achieve Australia initially told residents’ families it would provide whatever services the NDIS funds. However, the NDIS does not pay for medical care.
As a result, the NDIA and state government failed to agree on who should pay for equipment and consumables that fall in a “grey area” between medical and disability support.
The disputed cost gap is greater than $70,000 per annum for some residents.
The government and NDIA have since agreed on a one-year interim arrangement while they try to settle the dispute.
A lack of compassion
In January, the NDIA told families it would approve 12-month care plans “based on existing supports” pending further “conversations” with the government and Achieve Australia.
An NDIA email to families said “consumables and assistive technology” that were “clearly the responsibility (of) NSW Health” would not be included in the plans. Families would have to access this support through NSW Enable, a state government agency.
“Where the responsibility of equipment is not clearly defined it will be funded under the NDIS plan as a continuation of support for the current participants. This will be a transitional arrangement for a period of 12 months,” the NDIA email said.
Nurse Gary Dunne worked at the Summer Hill centre until January when he retired after 40 years of disability nursing.
Gary has been a CNE, group home manager and long-term acting Residential Unit Nurse Manager at Summer Hill.
He told The Lamp that staff pleaded with the state government’s FACS branch to keep Summer Hill open until NDIS funding problems had been solved.
He said Association repres-entatives, including himself, and Summer Hill parents’ group representatives also raised these issues when they met the state Minister for Disability Services, Ray Williams, before Achieve Australia takeover.
“However, the government had a deadline to sell us by a certain date no matter what problems we had with the NDIS,” Gary said.
“Our staff were amazed at how lacking in compassion FACS were in the last few months.
“The government’s approach was like trying to sell a house when you haven’t sorted out what the property boundaries are.
“Now that the service is privatised the argument is, who’s paying for it?
“The new owners are discovering that the bucket of money coming in is less than the bucket of money they’re having to spend on services.
“And staff and families are dealing with an organisation (Achieve Australia) that doesn’t fully understand what the problems are.”
An uncertain future for the disabled and their families
He said the interim agreement left families and staff unsure about the centre’s long-term future.
“Pre-privatisation staffing levels and wages are guaranteed for two years but current levels of service can’t be maintained long term with the current level of funding.”
Last year, Gary and another Summer Hill nurse, Mary Sweeten, made a joint submission to the NSW parliamentary inquiry into the provision of disability services.
Their submission outlined the case of a young man, Liam*, who suffered a traumatic brain injury and spent the next 11 years in various nursing homes – mostly indoors, in bed or a water-chair, without access to a wheelchair.
Since coming to Summer Hill eight years ago, Liam’s life has completely changed.
He now uses a powered wheelchair to enjoy outings and shopping and is exploring augmented communication devices with an occupational therapist
However, the submission warned, “Given the complexity of accessing medical goods and services within the NDIS framework, a non-government service provider could, as many have in the past, easily say no to taking on this kind of client.”
“The intensive provision of nursing and allied health services needed to achieve the kind of lifestyle now enjoyed by Liam would simply be beyond the available budget.
“Neither the minister nor their department can make a non-government service provider take any particular client.”
Gary and Mary told the parliamentary committee they were concerned that young people such as Liam would end up in inappropriate accommodation, such as a nursing home, and get the “bare medical necessities within a framework of whatever is available through NDIS funding”.
They urged the government to cover the funding gap if NDIS funding fell short of a client’s current needs. ν
*Name changed for privacy reasons.
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