Six years ago, when he was twenty-two years old, Jeff Johnson was in a car crash. Before the accident he was active and outgoing and loved to ride his motorbike. His parents, David and Barbara, warned him he was taking risks.
“We’d tell him, you know, you should be careful because you could injure yourself and he said, if I get a brain injury just shoot me”.
The car crash caused Jeff to have an extreme, diffuse brain injury, which left him functionally referred to as being minimally conscious. He’s awake and he’s aware but he can’t move and he can’t talk.
He can’t express anything at all other than pain and pleasure. He’s peg fed through a tube with pre-digested food being fed directly into his stomach. He has a tracheostomy to assist breathing and decongestion. He needs very strict nursing protocols to keep him alive.
Jeff Johnson is eligible for assistance under the National Disability Insurance Scheme. His father David tells me that while he believes in the principles of the NDIS, there’s a risk it will only benefit one sector of the disability community. Young people in particular, who have the potential and have the ability to do things for themselves. The problem, David says, is that they are just one cohort within the total.
“ The government really misses the point entirely. Because they’re focused on these people who provide good photo opportunities, people who can talk and people who can become more independent”.
Jeff Johnson does not provide good photo opportunities. He doesn’t walk, he doesn’t talk and his condition is confronting.
Wallsend Aged Care (WAC) started out as a hospital. It’s unique in that regard, David tells me. It’s an aged care facility which could be used as a model for aged and disability care nation-wide. But the Johnsons believe the government is eager to shut down large facilities like WAC because of the cost involved in running them.
These fears came true in recent weeks when the NSW government announced it’s decision to hand all government run disability services over to the non-government sector by 2018. Jeff’s home in WAC isn’t one of these assets. It falls under the jurisdiction of NSW Health. But David and Jeff’s mother Barbara fear this is the next step in an ideological process opposed to large residential facilities, which will eventually lead to the closure of their son’s home.
“Have you ever heard of a six bed hospital?” Barbara asks. “That’s the blue print the state is using for the best arrangement for people with disabilities, the six bed group home”.
Jason Carthill is an Ageing, Disability and Home Care (ADHC) employee who works in group homes in the Newcastle area. Like the Johnsons the NSW government has him worried. Jason, like all ADHC employees, works with some of the most profoundly disabled people in the state.
“ADHC tends to be the backstop for the people who non govs can’t take on because their needs are high, ADHC takes them on. So we tend to take on the more difficult, the more highly complex clients.”
One of Jason’s main concerns is how these clients with complex needs are going to be cared for appropriately if there’s a mass exodus of disability workers from the sector. An exodus Jason fears will take place in reaction to the state government’s decision to force 15,000 government disability workers into the private sector without their consent.
This selling off of all state disability assets includes the forced transfer of all current government staff to the non-government sector and the closure of all large residential care facilities. A move which Jason fears risks the quality of care of his clients and the quality of life of his colleagues.
“Take the night shifts for example. The non-govs don’t pay active night shift. They have what they call a ‘sleepover shift’. It’s $35 instead of eight hours pay. Who’s going to want to work eight hours for free?”
Aside from the issue of appropriate care, Jason tells me, is the problem of appropriate housing – the issue of available infrastructure for the creation of more group homes. He believes this problem will become particularly apparent when the government follows through on its promise to close facilities like the Stockton Centre
“The problem with closing Stockton is, where are they going to go?”
The Government says residents will be able to choose where they go, the NDIS is all about choice. According to the ADHC website the NDIS is “focused on the needs and choices of people with a disability”. The problem, Jason, says is with the many severely disabled clients that he works with, who may not be able to choose for themselves.
“A lot of the people we work with have difficulty with choosing ‘do I want a cup of tea or do I want a cup of coffee’. The basic daily requirements that you and I just take for granted a lot of them don’t have that capacity. So they don’t have the capacity to consent and they definitely don’t have the capacity to make large life decisions.”
For some the choice is physically impossible.
“A lot of our clients don’t have someone to go with them to the planning process. A lot of our clients can’t even speak.”
A government worker even more directly affected by these changes is Sarah Heart, a nurse who works at the Stockton Centre, the Hunter’s largest residential care facility. The centre is home to 357 people living with disabilities; some who have lived their whole adult lives at the centre and are now looking at having to find a new home.
Sarah says her clients are happy where they are, pointing to features such as the recreation hall which doubles as a cinema and the grounds where clients can go for walks unsupervised or be wheeled around without cars or trucks to worry about. There’s an activity training centre, a swimming pool and an access path to the beach.
The ADHC website doesn’t state, explicitly, why all NSW large residential care facilities are being closed down, but it does set out its vision for the future.
“They will be replaced with contemporary accommodation in the community which will be designed to provide a home like environment, with more privacy, flexibility in daily living and opportunities for increased participation in the local community.”
This doesn’t come as much consolation to Sarah, who doesn’t understand, if the NDIS is all about choice, why the people she cares for can’t choose to keep living in the home they’re happy in.
“Really what the government needs to realise now is this is a community. It’s not an institution. It is a gated community. They’re becoming common practice. Lots of non-disabled people live in them. Why can’t these people?”
(All quotes are from recorded interviews I’v carried out. Names have been changed to protect the subjects’ privacy)