Making the NDIS Work for Young People in Aged Care

Young people in aged care are struggling to get onto the National Disability Insurance Scheme. Commonwealth and state governments, as well as the NDIA, need to take action, writes Luke Bo’sher from the Summer Foundation.

There are over 6,000 young people in aged care waiting to get onto the NDIS. These young people are living in aged care facilities because the current disability system has failed them.

The NDIS is Australia’s opportunity to turn around the systemic failure of an unfunded and broken disability system. Governments have committed an extra $11 billion per annum to the NDIS to fix this problem.

But the early rollout of the NDIS is showing that there are enormous challenges in making the system work for people with complex needs. The first part we need to get right is making sure that people with disability are getting onto the NDIS. And this is not working well for many young people living in aged care.

The Summer Foundation has reached out to young people in aged care and connected one in three of all young people in aged care who made it onto the NDIS in the trial sites. This work highlighted the barriers for young people in aged care to get onto the NDIS.

The NDIS is a team effort between governments. Fixing the access pathways for young people in aged care requires the Commonwealth and state governments, as well as the National Disability Insurance Agency (NDIA), to review what is and is not working and take action.

There are five areas where governments could take action to ensure the NDIS rollout works much better for young people living in aged care. This would transform the lives of young people living in aged care.

We need to focus on getting young people in aged care onto the NDIS as quickly as possible.

The promise of leaving an aged care facility is, unfortunately, a long way away for many young people in aged care, often taking 18 to 36 months from when the person gets into the NDIS.

COAG’s Younger People in Residential Aged Care (YPIRAC) initiative demonstrated the complexity of working out what their preferred housing option would be outside an aged care facility.

The first 12 months on the NDIS is often a time for participants to work out their housing goals and identify appropriate community options.

It can then take up to two years for a housing provider to build the required housing. This makes for a three year journey from getting onto the NDIS to leaving aged care for many young people.

The NDIS is being rolled out progressively around Australia. The Summer Foundation’s analysis has identified at least 2,280 young people in aged care live in a site that does not get access to the NDIS until at least November 2017. Some of these young people will not have access to the NDIS until 2019.

Because housing and support takes so long to organise, these young people will have very limited chances of leaving their aged care facility by the end of 2020, while many will wait as long as 2022 to leave aged care.

Young people waiting five years in inappropriate accommodation is detrimental to their family relationships and for their mental health. The one in four young people in aged care with school aged children will spend the next five years having their kids visit them in an aged care facility.

And it’s bad for the country. People’s living skills decline in aged care, so when they finally do get into the NDIS the cost of their support will be significantly higher.

       It is critical that young people in aged care get onto the NDIS as quickly as possible. And yet, on the ground, just getting into the NDIS is proving to be a very difficult endeavour for many young people in aged care.

Why is getting into the NDIS so complex?

The NDIS trial site experience shows that over 98 per cent of young people in aged care are eligible for the NDIS. And the NDIS is designed to give every one of these young people the funding to leave aged care and move back into the community.

Yet many young people in aged care are not connecting with the NDIS because the process is too difficult.

Young people in aged care often face particular disadvantages, such as:

1. Communication Barriers: Limited access to computers or internet, or to assistance with communication to enable phone calls means these young people cannot call the NDIS information line to register, or understand and fill out of forms posted by the NDIA.
2. Lack of access to information: Most young people in aged care are not connected to the existing disability system, and so they have little or no past experience of disability and community supports. They are not connected to an organisation that knows how to get them onto the NDIS.
3. Social isolation: The social networks of young people in nursing homes are likely to be complex or non-existent. There is often very little informal support available to them due to family breakdown, or isolation.
4. Under-documentation: Many young people have inadequate or non-existent medical or allied health information about their functional or health needs. This means they have to go through time consuming and expensive assessments to get the evidence of their disability.

The government’s current target is that 2,000 young people should get onto the NDIS between July 2016 and June 2017.

No data is currently available on their progress, but on the ground experience suggests that the number of young people entering the scheme will be significantly less than 2,000.

Below are the key steps involved in connecting young people in aged care to the NDIS.

Governments can take action to get young people out of aged care sooner

The government has an opportunity to bring forward the date that young people in aged care can leave aged care, without having to change the NDIS roll out schedule or NDIS funding levels.

Governments could make an enormous difference to the lives of young people by focusing on the following five action areas:

Reduce the bureaucratic hurdles to get into the NDIS and actively support young people to get in

• The Department of Social Services should designate being in aged care as one of the 75 programs across Australia that are listed as giving automatic entry to the NDIS.
• The Commonwealth and NDIA should commit to a one-off initiative to get all young people in nursing homes fully connected to the NDIS. This would fund a dedicated outreach initiative to make sure all 6,000 young people get an NDIS funded plan.

Bring young people in aged care into the NDIS faster and with a higher priority

• The state and Commonwealth governments should allow young people in aged care to be eligible for the NDIS within the first three months of the NDIS becoming available in each site.

Bring forward support for young people in aged care who live in the last roll out sites

• The Commonwealth should fund a small “housing planning” package for all young people in aged care who live in locations where the NDIS is only available after November 2017. This would fund young people in aged care to undertake all the preparations to leave aged care so their first NDIA plan is the funding to leave aged care, not just to develop a plan to leave. This is funding the NDIA is already planning to spend, it just brings this funding forward so that the planning can occur sooner.

Build the capacity of aged care providers to be ready for the NDIS

• Better prepare aged care providers to get their young residents into the NDIS through the Department of Health funding a targeted information campaign and provider workshops to skill up aged care providers.

Stop the pipeline of entry into aged care by making the NDIS work better for those in hospital

• The states and Commonwealth should declare fixing the hospital discharge pathway with the NDIS a strategic priority for 2017. The Disability Reform Council should establish a group of experts that reports back with a strategic plan to addressing the health-disability interface, including discharge planning, access to slow stream rehabilitation and clinical services in the community.
• Governments should consider whether an additional discharge planning role is needed to make sure young people in hospital do not fall through the cracks or suffer from blame and cost shifting between NDIA and hospitals.
• Young people in hospital at risk of entering aged care should be able to become participants immediately. This will allow them to access funding to move back to the community and avoid ending up in aged care.

This issue can be resolved. No young person in Australia should end up in aged care simply because there are no other options.

Governments should commit to the above actions immediately to make the NDIS work for young people in aged care.

The Summer Foundation has produced a free Practice Guide on how to get young people into the NDIS and can help guide families, aged care providers and advocates on getting into the NDIS.

About the author: Luke Bo’sher is the Summer Foundation’s head of policy and strategy, leading the organisation’s work to develop housing for people with disability using NDIS funding. He was intimately involved in the development of the NDIS, working extensively on scheme’s design and housing policy in his roles as a director at the National Disability Insurance Agency and advisor at the Department of the Prime Minister and Cabinet.