23 July 2012
Maryanne Diamond asks, what will the National Disability Insurance Scheme look like for Australians who are blind or have low vision?
At the moment, Freddie, Nanna and Lucy all get support for their vision loss conditions under a number of current state and national government funded programs.
Blind Freddie will probably be okay, but what about Nanna and her granddaughter, both of whom are losing their vision?
Freddie was born blind with a genetic condition, and will be eligible to be assessed for support under a National Disability Insurance Scheme.
Nanna is 78, lives in her own home, but was recently told by her doctor that she had to surrender her driver's licence because her vision isn't what it used to be. Nan isn't happy, and is worried she'll end up in residential care as her eyesight gets worse. She has macular degeneration, which affects many people as they age.
Her granddaughter, Lucy, is a bright young thing in her 20s, and she's having a struggle with her sight too. Lucy is university educated, and has got a good job in the Public Service. She's got retinitis pigmentosa and is losing her sight. She has to learn how to navigate the world with a white cane, and undergo training to use equipment that will allow her to keep her job.
What isn't clear yet is whether or not any of these folks will continue to get the support they need under the proposed National Disability Insurance Scheme (NDIS). The NDIS is a once-in-a-generation social and economic reform, eagerly awaited by the broad disability sector. It will put in place appropriate and long-overdue support for people whose lives are overwhelmed by the consequences of severe disability. It is a scheme for which people who have disabilities, carers, service providers and disability organisations have campaigned for decades.
And under the auspices of the Council of Australian Governments, expert advisers, regulators, technicians and consumers have been given the task of taking the Productivity Commission Report Recommendations on an NDIS (2011), and making some decisions on eligibility and assessment, workforce planning and how it will function on the ground. This is a big job, and no one under-estimates the complexity nor the magnitude.
While blindness and low vision are recognised as sensory disabilities, the incidence compared with other disabilities is not as great. And people who are blind get recognition of their disability with a non-means tested Disability Support Pension. It is therefore true that within the whole disability sector, blindness and low vision is not seen in the same debilitatingly catastrophic way, as for example, Muscular Dystrophy or Cerebral Palsy.
The kind of supports needed under the NDIS include early intervention and rehabilitation. Babies and children need early intervention so they can learn and flourish and go on to live their lives as other children do. Younger people need supports and equipment so they can get an education, a job, and make their own decisions about their lives. Older people need to relearn living skills. With these skills of independence older people can live in their own homes for longer and be less dependent.
While the special advisers take on their tasks, it's timely to raise some of the issues that affect people who are blind and have low vision. Not because decisions have been made to exclude these conditions, but because it is now that the nuances have to be considered.
If, for example, legal blindness only was the defining criteria for eligibility, then Lucy wouldn't get the mobility training, or the technological support and equipment she needs to continue as a productive independent member of the Australian workforce.
If, for example, the Productivity Commission recommended age-limit for the NDIS of 65 was set in legislation, then Nanna wouldn't get the assistance that she needs to remain independent.
Nanna's supports and assistance wouldn't necessarily have to come through the NDIS, but the reforms already announced in the Aged Care packages, would need to explicitly address the needs of people with sensory disabilities. For example, under these reforms there are more Home and Community Care packages available. Mobility training and independent living skills should be part of those packages.
A National Disability Insurance Scheme is built on a policy of choice, need and independence. This is exactly what future services should reflect. Vision Australia provides services, including advocacy and information to about 50,000 Australians who are blind or have low vision.
And like many not-for-profits dependent on government funding and the generosity of donors, we are up for the challenges of the NDIS. Our first task is to do what we can to influence the decision makers to ensure that no one gets left out.
The next task is to meet the aspirations and expectations of the Freddies, Nannas and Lucys so they can make their own life choices. These are real challenges that will sort quality and service relevance from the chaff, not only in the sensory sector, but across the whole disability spectrum.
You can find out more information about Lucy here.
Maryanne Diamond is General Manager of International and Stakeholder Relations at Vision Australia and President of the World Blind Union.