Mum, 75, struggles with caring for ill adult kids
PAM Handley was mentally and physically exhausted as she celebrated her 75th birthday yesterday, struggling to fill gaps in the care provided her two adult children who both have profound and worsening disabilities.
Disability Services Queensland says the help it funds is adequate to the needs of Mrs Handley's 42-year-old daughter Anna and son Rafael, 39.
The reality is an aging mother is at her wits' end as she watches the final stages of her daughter's debilitation from the happy, healthy kid she knew 22 years ago.
Both siblings suffer from the progressive, degenerative genetic disorder, Friedreich's ataxia.
"I'm just exhausted Mrs Handley said.
Anna struggles to sleep at night. Nights have always been bad for her, unable to sleep as contractions and spasms rack her body and she needs manipulation to give her some relief.
Both need constant care.
Mrs Handley said there were different levels of ataxia yet the government treated every one as having similar conditions.
Anna had been a healthy kid until 22 years ago when she was diagnosed. Her life has become progressively more difficult to where morphine now provides her with only limited relief.
"Rafael is not as advanced but he has a heart condition. A friend helps who knows he needs monitoring," Mrs Handley said.
"People need support that fits their condition. Anna receives 65 hours a week but needs 24-hour care. I wonder how others are going with it because it is getting beyond me.''
A Department of Communities, Child Safety and Disability Services spokesperson said support for people with disabilities was based on their level of assessed need. However that support is offered within benchmarks, "with 65 hours being the upper level of funding for each person with disability and is not related to any specific condition".
"In this situation, each family member may be assessed as requiring this level of support,'' the spokesperson said.
"There are a range of options available to increase flexibility. For example, some people choose to pool support hours with one or two other people who have individual funding to increase the hours of support. Others self-direct their funding and design flexible arrangements to suit their particular requirements."
The spokesperson said the government is getting people with a disability ready for transition to the National Disability Insurance Scheme.