Warwick & district disability needs analysis: final report, December 2011

Warwick & district disability needs analysis: final report, December 2011

[Executive summary]:

Introduction:
The University of Queensland was commissioned by the Warwick and District Disability Support Group Incorporated to conduct a needs analysis for people with a disability and their Carers in the Warwick District. The output is this report and the Warwick and District Disability Resources Directory.

Methods and Sample:
A survey of Carers and people with a disability was conducted, with 56 Carers and 26 people with a
disability providing data. Eight Carers, two people with a disability and four Key informants were interviewed.

Results:
Carers
The profile of 56 Carers who completed the survey questionnaire shows that approximately th~ee -
quarters are parents, a similar proportion care for one person with a disability, more than two-th1:ds
of those they care for require assistance from a Care giver and approximately the same proportion have more than one disability. On average these Carers are 55 years of age, but almost a third are 60 years or over. More than three-quarters of these Carers are female. On average these people have been Carers for 22 years, with just more than half being sole Carers. Three-quarters of th1s sample
report receiving financial assistance from government for caring for a person with a disability, and for almost one-half, Centrelink is their primary source of income.

The eight Carers who were interviewed were selected to represent diversity in terms of location, age, age of the person they cared for, and the type of and number of disabilities this person had.

The interviews revealed that the main everyday challenge for Carers is that caring is 24/7 - it is continuous whether it be because the person being cared for has high needs or because constant supervision' is required . In addition there are difficult behaviours to contend with, and these in addition to the relentless nature of being a Carer require patience. The physical demands through lifting and providing personal care are taxing. The role of Carer is unpredictable because it is dependent on how the person with the disability is managing on a day-by-day basis, but also because service delivery can be erratic. The outcome of these everyday challenges for Carers are fatigue and mental stress, and the lack of a social life.

What these Carers said keeps them going when life is very difficult, is simply that there is no one else
-they have no choice, but to continue . That most interviewees kept on caring for the person with
the disability because there was no one else to provide the care is telling. While support from fam1ly
and friends and their interests help Carers, their key driver is that they feel responsible for the
person, and despite the everyday challenges, keep on with this demanding caring role.

The 'costs' of caring are significant. While the emotional costs are deep, it is the social limits that serve as constant reminders of simple pleasures these Carers may never have. The financial costs range from struggling to purchase basic requirements such as food, to the provision of accommodation for long term care.

Remarkably Carers did not report using any services directly for themselves. Instead the few who commented here indicated that either they were not aware of any or they 'muddled' through with help from friends or on their own. Carers who completed the questionnaire reported higher levels of psychological stress than in the general population.

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