We can’t wait for the PC report!

By Yasmin Noone

State, territory and Commonwealth governments must not wait for the Productivity Commission to tell it what to do about disability and aged care services.

Instead, governments must act and provide more funding to better support young people with a disability now.

This is the call from advocates of younger people living in residential aged care and it is timely. It comes off the back of the release of an Australian Institute of Health and Welfare (AIHW) report trumpeting the success of the joint federal and state government Younger People with Disability in Residential Aged Care funding program, which ceased last month.

The report stated that since the program’s inception in 2006, the number of people under 50—the program’s initial priority group—admitted to residential aged care fell by 22 per cent. AIHW also  found that, as a result of the five-year program, there was a 29 per cent reduction in the number of people under 50 living in residential aged care. Over the four years to 2009-10, around 139 people under the age of 65 years also moved out of residential aged care into age-appropriate accommodation.

Even though funding for the program officially ceased on 30 June, the Commonwealth and some of the states have promised to continue to support those already in the program by providing a further $122 million over the next five years (per state, territory or Commonwealth government).

But, according to the national director of Young People In Nursing Homes National Alliance, Dr Bronwyn Morkham, that is not nearly enough.

She, along with other advocates, want additional money to look after the 6,500 young people not yet covered by the program, to prevent them from ever moving into residential aged care and to enable those already there to move into more age-appropriate accommodation.

“This Commonwealth funding will really just contain those people already in the program,” Dr Morkham said. “The money will cover those people who have already been helped but the $122 million [over five years] won’t be enough to start new services – it will only sustain the old services.

“It was clearly stated that this program was supposed to be a starting point not a solution. Around 6,500 people aged under 65 are still waiting in nursing homes for the same opportunity to participate in this program.

“It has been frustrating that some of the young people have aged beyond 50, waiting for [more money]. It’s unfair that they have not been given an opportunity to participate in the program.”

CEO of Youngcare, Marina Vit, echoed the same call for additional growth funding. She said that although $244 million over five years may seem like a lot, realistically, “you can only build an average road for that”.

“There is no growth in the funding provided and no new people can access it,” Ms Vit said.

“Yes, there has been some improvement where a small number of people [under 65] have left aged care but in reality, the numbers are pretty much the same as when the program started. That means a lot more has to be done to tackle this problem.”

“There are also 700,000 younger people being cared for at home by family and friends. This problem is a very large problem and it should be addressed.

“The funds were always supposed to be just a start – a toe in the water. The issue is enormous and there is no way that $244 million was going to solve the problem…No one should be patting themselves on the back about this.”

Actually, let’s not wait for the PC

The Productivity Commission is due to hand its final report from its inquiry into Disability Care and Support to government at the end of this month. The PC is expected to recommend how a long-term disability care and support scheme should be designed and funded to better meet the long-term needs of people with disability, their families and carers.

“The government has not yet adopted the PC’s [draft] recommendation for a National Disability Scheme,” said Ms Vit. “So in the interim, this black hole has been created where no one is doing anything as everyone’s waiting for the final report and for the government to act.

“That’s not appropriate. There are thousands and thousands of younger people with a disability who need support. It’s not appropriate to sit on our hands and wait for an outcome. People need help right now. This is a growing problem.”

In the lead up to the government’s response to the heavily awaited PC final report, both advocates have called for greater collaboration between Commonwealth and state health and disability services to ensure there are clear pathways between the sectors.

“There are massive gaps in the system,” said Ms Vit. “There are some illnesses the health system will look after but if you have a degenerative illness, you are put in the too hard basket. It’s the same with brain injuries. So there has to be greater collaboration between health and disability services to look after people properly.”

Dr Morkham agreed. “Disability services, as they stand, stop at the door of the nursing home and that is wrong,” she said.

“Disability services need to go into aged care and work with it. There needs to be more collaboration between the sectors to stop young people going into nursing homes and to help those who are in nursing homes who have chosen to do so.

“Without the development of pathways [from one sector to the next], we will go back to square one. This kind of reform is significant and absolutely essential.”

The situation is dire and in urgent need of attention. But, she stressed, “this is not the nursing home’s fault”.

“They are there to support a very different population. They are not meant to be living after young people with another 50 or 60 years left of life.

“For example, I can think of one younger woman living in a nursing home who is engaged to be married but she said she can’t get married while she is in a nursing home.

“She said that if she got married, her husband would visit her one or two hours a day but how will that be a sustainable marriage over 60 years? She wants to get on with her life and contribute to the community but, at the moment, she is denied that opportunity as the state government has not committed further funding.

Living in a residential aged care facility before your time, according to Dr Morkham, means “isolation”. “It’s an environment where people are dying around them. It can be depressing indeed.”