Page 5791 - Week 14 - Tuesday, 7 December 2010
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families to care for their loved ones, it is difficult to imagine the physical and emotional toll on the primary carer and other family members.
Through the submissions received and oral evidence, the committee was able to gain some insight into the plight of carers in the ACT. People do not choose to become carers; they do so out of necessity when a child is born with a disability, a child or partner develops a mental illness or chronic condition or an elderly parent develops an age-related disability. Most families accept their caring role as an extension of the love of the family unit. However, love alone is often not enough to meet all the needs of care recipients.
For example, children with disabilities, like everybody else, grow into adults with intellectual, emotional and social needs that cannot necessarily be fulfilled within the family unit. Adults living with a mental illness or an intellectual disability require support outside the family unit to develop independent living skills in preparation for a time when their primary carer may no longer be able to provide care.
For all people, young or old, with a disability or without, social interactions and friendships outside the family unit can only improve one’s quality of life. For this reason the committee chose the title for this report, Love has its limits, from a quote by a parent, Ms Karna O’Dea, in recognition of the difficult and frustrating situation in which many carers find themselves.
The committee embarked on this inquiry to make a difference to the lives of carers in the ACT but were surprised at the lack of confidence expressed by many carers that anything would change. One carer told the committee:
ACT families are too focused and too fatigued, to concern themselves with yet another bureaucratic inquiry, to answer yet more questions that have been asked a thousand times and see the same tokenistic action.
During all the inquiries, policies and action plans that have gone before, the voice of the carer was clear—little has changed over the years. While carers have a range of needs, depending on age, ethnicity and the care recipient’s needs, respite care was identified as an essential service for all carers. Without it, many families would not be able to continue in their caring role for as long as they do. Care recipients also need access to quality services to occupy their days, particularly in the post-school years or when their primary carer is no longer able to continue in the caring role.
This was not an easy inquiry. The angst and frustration expressed through submissions and directly by carers who appeared before the committee at public hearings was disturbing. The daily struggle for these families was exacerbated by the lack of certainty for the future of their loved ones.
The committee made 28 recommendations, including recommendation 1, the importance of a common understanding and definition of respite care for all carers that includes the role, purpose and benefits for carers and care recipients. Respite care is a discrete service that should not be confused with other support services.
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