Support & the NDIS

Now that participants and their families are given greater input into the design of their support packages under the National Disability Insurance Scheme, has the role of a support worker change? 

Perhaps I should explain what a support worker does first, despite the role being a around for over 10 years now, the job is often confused with that of a paid career.  Generally the term 'career' in  2017 is used to refer to an unpaid person who provides some type of 'support' or 'care' to an older Australian or person with disability, usually a family member.  The term 'career', implies that a person has some sort of responsibility for a persons well being. 

This may include responsibilities such as finances, medical needs, medication, diet, accommodation and general well being.  A 'career' paid or unpaid may also provide, personal care support, support in the community, transport, support with banking and shopping, social support or support to attend activities.  These types of supports have been separated by terminology for over 30 years and yet we commonly still refer all 'care workers' by the term 'careers'.

Just as not all people living with disabilities need assistance with their daily lives, not all people who need some assistance day to day need the type of 'care' given under the 'medical care model'.  The medical care model emerged from a system where people with disabilities were routinely placed in the care of a institution.  

The birth of the disability human rights movement gave rise to the awaking that not all people with disabilities needed the same level of care. In fact many people with disabilities could living independent lives in the community given the right level of care.  For example supervision with taking medication. This type of support was still viewed as 'care' and workers were still referred to as careers. 

This level of independence is different to those who need to live in supported accommodation.  Supported accommodation has many different levels, the highest level of support is dementia care nursing home units. These individuals need care at a level to protect their own safety and the certainly can not be responsible for things like medications and money matters.

Sadly some younger people with disabilities need 24 hour care to survive.  There community living options are very limited and they are either cared for in the family home or high care supported accommodation and nursing homes. The ndis recognises young people living in nursing homes is not appropriate and alternatives need to be sort.  

At the other end of the supported accommodation scale are houses or individual detached homes or unites that have some type of 24 on call support on site.  These residents may need very little 'directly care' day to day.  However the might need high degree of support.

The ndis is a system that finally puts to rest then one size fits all approach to disability care.  People with disabilities, their families and their supporters have made it very clear they not longer want to be made feel like patients. This was the pre-ndis model of care. 

As early as 30 years ago it was decided we needed another term for career, for those that only needing support or assistance. Yet many in the industry are still engaged as paid careers or refer to themselves as 'carers' or the job title PCA.   If you as me the term 'personal care assistant' is sit under the medical model.This doesn't really fit with being a paid employee of a person with a disability.

As the ndis moves away from the medical of disability through embracing the social model of disability.  The social model of disability, says it is not a person's impairment that disables them, but the structures society has created  It is the ndis direct roll to dismantle these structures. Services that support people with disabilities are included in the structures that need dismantling. 

While we need to rethink how we address disability access and broaden what falls under the label of disability access, the real challenge is to increase the knowledge of disability.  Under the ndis disability does not have a face, but many faces.  Disability comes in many different forms. Physical, intellectual, neurological, sensory, behavioural, physiological and dare I say it, attitudinal. The most disabling factor in mt life is the attitude of others.  Sadly support workers rank high on those who disable me.

Under the ndis the role of a care or support worker is to empower people with disabilities to achieve the goals the have set themselves.  Where the participant has a guardian or under the directive of the adult-guardian, then they may require some level or care in addition to assistance in their daily lives.  The last thing people with disability and their families want is protection 'form perceived threats identified by support workers'. 

The protective roll of a paid career is no longer consistent with the ndis legislation the delivers choice and control.  It is no longer up to a paid support person to decide what an individual with disability needs.  In an environment where participants or family members are now-self directing their own supports, the role of support worker and support agency has dematically changed.  

Services need to adapt to the new environment before they lose clients, because advocates like myself who were part of the Every Australian Counts campaign aren't going away.  The ndis may be rolling out, but our human rights and freedoms are still being breached.