Bob and Julie Flack planned to spend their retirement travelling. But that changed when Bob was diagnosed with motor neurone disease (MND) in 2013.
Because he was diagnosed when he was 68, Bob isn’t eligible for the National Disability Insurance Scheme (NDIS). Instead, he must rely on the aged care system, designed for age-related conditions and criticised by health bodies for not supporting the needs of people with complex disabilities.
Although Bob recently moved on to the highest level package available, he says it is still not enough to cover the increasing costs of living with MND.
He and Julie used their savings and superannuation to buy supports, such as hospital beds and shower chairs, as well as modify their house with ramps.
“The service providers couldn’t give us the help we wanted,” Julie said. “We kept on saying ‘We need more help, we need more help’ and they kept saying ‘We don’t have the staff, we don’t have the staff’, so we changed ships to another group.”
Bob is one of more than 2000 people living with the disease in Australia. Half were diagnosed after the age of 65.
MND Australia has called on the government to ensure everyone with the disease has access to the right care, regardless of their age or which sector funds the service.
“Unlike the NDIS, aged care packages are designed to help those with age-related frailty and do not address the needs of someone living with a disability,” said the organisation’s chief executive Carol Birks.
“People with MND must have access to early intervention, ongoing expert assessment, complex support co-ordination, palliative care, respite, aids and equipment – the range of services to meet their assessed needs.”
Many people aged over 65 with other complex disabilities report similar experiences.
Polio Australia says polio survivors face similar challenges.
“It is a most unfair double whammy – born too early to benefit from the vaccines, and now too old to benefit from the NDIS"Gillian Thomas
While the estimated 400,000 polio survivors overcame initial infection, they are now experiencing the late effects of the disease, which may include post-polio syndrome. Diagnosis of the later effects can take years.
Polio Australia president Gillian Thomas, a polio survivor herself, understands the situation better than most.
She said people experiencing the late effects of the disease contracted polio before vaccines became available in 1956 and 1966. New polio cases ceased by the mid-1960s and knowledge of the disease faded.
“Services dried up once polio was considered to be a solved problem,” Ms Thomas said.
“Over the last few decades, polio survivors had been emerging as a group who have special needs, but the understanding of our condition has been lost in the fullness of time.
“Many health professionals are unaware of polio and the impact it can have on survivors in later life.”
Ms Thomas said some people were told the symptoms were all in their head, or related to menopause, depression or weight.
“Now, as we age past 65 and need disability support services, we are ineligible for the NDIS and can only access the inadequate supports available through My Aged Care,” she said.
“After initial recovery, many polio survivors have never received disability services so cannot join the NDIS under the continuity-of-support provisions.
“It is a most unfair double whammy – born too early to benefit from the vaccines, and now too old to benefit from the NDIS.”
Aged care v NDIS
- A person is automatically entitled to treatment on the NDIS but needs to be assessed for aged care
- NDIS has no financial limits but the highest subsidy amount for a level four home care package is about $49,500 a year
- NDIS funds all necessary supports but aged care does not necessarily encompass disability needs
- There is no NDIS co-payment. Aged care providers may charge a means-tested co-payment
- Once a plan is in place on the NDIS there is no waiting. There is a limited number of aged care packages
- NDIS plans can be revisited to increase supports as needed. Changes to the aged care package require reassessment
MND Australia is lobbying the government through its Make Aged Care Fair campaign. To sign the petition, go to www.mndaction.org.au
This article first appeared on www.thesenior.com.au