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High care needs doesn't have to mean full-time aged care. Especially if you are only 26.

30 October 2015
Kirsten Lees
Principal, Think First

High care needs doesn’t have to mean full-time aged care. Especially if you are only 26.

Today I watched five people spend $200,000. In under four and a half hours.

They didn’t even break a sweat.

We weren’t at a car dealership in downtown New York, or on Singapore’s shopping strip. And it wasn’t the price of a garden shed in Sydney’s overheated housing market.

The venue: suburban Brisbane. The big spenders: representatives of Youngcare, a charity that has worked for over 10 years to find better alternatives for young people with high care needs than residential aged care. And Griffith University, which has led the research behind so much of what Youngcare do: analysing the need, stress-testing the solutions, collating best practice worldwide. And finally Wesley Mission Brisbane, who actively provide the care at the Youngcare Share House and Apartments.

The occasion was the annual allocation for the Queensland round of At Home Care Grants that the Youngcare panel administers on behalf of donors, fundraisers and corporates, Australia-wide. The goal: to make a difference to as many peoples’ lives as possible.

More than 7,000 young Australians with intellectual and physical disabilities are living in aged care homes around Australia.

The target of these grants are young people (aged 18 to 65) at risk of entering aged care, when there are viable alternatives, or when there could be if a small amount of money can be found to buy equipment, make home modifications, or to give hard pressed carers support or time out.

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On the table was $200,000. 

61 applicants were seeking a combined total of $433.000.

The panel knew they could make a difference to a number of lives. They also recognised that, despite their best efforts, some needs would remain unmet, some people would be disappointed.

“We are seeing more and more unmet need . We would like to be able to fund more aspirational items – such as equipment that would allow for at home study, improved mobility scooters or lifestyle facilitators. More and more we are seeing requests for support that simply makes life possible. Lifestyle remains a wish.”

Shane Jamieson, Liaison Officer,   Youngcare Connect

So, how does Youngcare approach making a decision in such circumstances?

The first thing I learned, is that it isn’t about who deserves. Everyone deserves help, consideration and support. The focus had to be where the biggest difference could be made, where the applicants could be most helped, or the need had become most critical.

The analysis was structured, with four – at first glance – simple criteria:

  1. Are they at risk?
  2. Will the grant keep them at home?
  3. Is Youngcare the last resort?
  4. Will it improve quality of life?

But when applied to the complexity of disease and injury as diverse as early onset dementia, Huntington’s, acquired brain injury, stroke, paraplegia, MS, amputation, epilepsy, cerebral palsy, the simplicity fades. Add the varied complications of living circumstances and existing support – from families working full time, to carers in their late 70s, or who face considerable health challenges themselves, to people living alone or in isolation, answering these seemingly simple questions is a demanding and fraught process.

That’s where the range of expertise on the panel is so vital. Youngcare has been administering At Home Care Grants since 2009, and run Youngcare Connect a free national information and support line which helps families navigate the maze of the healthcare system and the support available to them. Combine this expertise with the front-line experience of Wesley Mission Brisbane and the evidence-based research analysis of Griffith University, each case was considered with careful, informed examination, in terms of of how needs could best be met, with the greatest impact.

It was a challenging discussion.

But it was a discussion that uncovered as many stories of fortitude, strength, determination and compassion as it did of need: so many people with high care needs, determined to live independently and contribute to family and society, as parents of young children, as students, as active members of their communities, and of the families and friends committing themselves to shoulder the burden of care.

It’s easy to overlook the importance of basic needs like the ability to shower independently, access to a bidet for personal hygiene, a bed to allow a newly married couple to share a room, a hoist to help with the heavy lifting or three hours a week in-home care to give family members time to work, sleep – just breathe, perhaps. I hadn’t thought it through. The reality of the impact of Youngcare’s At Home Care Grants on people’s lives is immeasurable.

34 applications funded at a total value of $203,600.

Funding fell short by $228,960 – 27 applicants could not receive funding.

To support Youngcare’s work finding alternative appropriate living environments for young people with high care needs, donate now.

To stay in touch with Youngcare’s work, clients and fundraising activities, find them on Facebook.

Kirsten Lees is the Principal of Think First. She attended the Youngcare At Home Care Grants allocation panel on the invitation of Youngcare. And she is very pleased she did.

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