Choice without risks
Is not real choice
The roll out of the National Disability Insurance Scheme known as the NDIS is set to be the champion of choice for people living with disabilities and their families, carers and guardians, who support them.
However what will this 'choice' look like? What happens when back choices are made? What role does the service provide play in duty of care? Does the person making the choice understand the choices the can make and the potential risks each choice can have?
My largest concern around the NDIS and provision of choice and empowerment for people with disabilities is how dose a person with disabilities make choices about direction for the future when they have never made choices before?
How do we define choice?
Firstly we should define what choice is and perhaps isn't - real choice is made when the individual knows the options available to them and the conquences that each choice can impact on their lives. Our choices have positive and negative conquiences. Ultimately the individual making the choice with be positively and negatively affected.
Ability to make a choice is dependent on the information available to us. Let's look at a simple choice: Ordering a meal at a restaurant.
- How do I know all my options?
- If there is a menu outlining my choices, did I need an assistance?
- Was that assistance available?
- Do we understand the menu? Many times their are dishes on a menu I am not familiar with.
- Not everyone is literate - if reading is the only way to access the menu we many become dependent on recognition to make our choice. Hence our choices become limited.
- The price of a meal and my personal budget choices may influence my choice and pose limitations.
- I have order from the menu to be told sorry we're our of prawns. So any dish with prawns is not available. Suddenly I find not all the information I needed to make my choice was available. (No safe guard)
- If I chose a dish I not eat before I run the risk of not liking it! Remember offering people choices has risks! Each of us takes risks every day.
- Eventually I chose what to order based on the information available to me. My meal is serve with chilli on top! The menu I read didn't give me that information and as a result of being allergic to chilli I can not eat the meal.
What things can influence our choices?
Even not being disadvantage by a 'disability' my choices have risks. Sometimes when I order from a menu I have a support worker with me. As I am short sighted their are times I need the support worker to read them menu for me, suddenly I am dependent on my support worker to give me all the information I need to make an informed choice. What if that person decides only to read out the choices they would chose or they assumed I could afford. Is it ok for a support worker to filter my choices?
Ability to make choices is redistricted by external factors. Thinking about our restaurant experience, our choices are bestirred by costs and personal budgets. In my case choice is also restricted by food allergies. In this case is a 'food allergy' a disability?
Here we see how a person's disability, can begin to limit their freedom to make choices. We have not even begun to explore how the introduction of the NDIS increase choices and the increase in potential risks that may occur.
Is it ok for others to limit out choice?
I always find discussions around 'duty of care' interesting, when talking to support workers. I not sure if we're aware how often our personal values and judgments influence our interruption of duty of care.
'Duty of care' issues are not limited to the role of a support worker. We will all experience duty of care issues at some time in our lives. As parents we have 'duty of care', we take responsibility for our children's or those under our guardianship until they reach the legal age of 18.
In terms of 'duty of care', many of the responsibilities of a parent are around the issues of safety, finical responsibility and legal responsibilities. No one is truly able to make any choice they wish. If parents are found to be irresponsible in their 'duty of care, their are government agency who can step in and protect children who are continually at risk.
However not all unpleasant experiences are the result of bad or incorrect choices. As a child learns to walk, the will fall over and collect their fair share of bruises. However if parents prevented their child from learn to walk out of fear they many be hurt and some how restrained them, then this would be deemed a fail in the 'duty of care' as a parent and the child protection agency would step in.
So the notion the we are free to make any choices we like is not founded. Of course every day people make bad choice and some people chose not to obey the law and this has consequences for them and the people around them.
I know a man who chose not to get a licences as a result whenever he drove the car and chose not to stop and the red traffic light, his wife would be fine and lose points on her licence. As a result eventually as a result of this man's choices his wife loss her licence and she had to appear in court.
Even though this man was not penterlise by the law his choices still had repercussions, as a result his wife could not drive for three months. So what happens to the right to make bad choices or even brake the law when their is proven diminished responsibility.
Do people still have the right to chose to break the law. I guess the simple answer is 'no'! There are many incidences in the course of our life span where adult guardianship is enforce legally on another and and as a result of that their may be times when the adult guardian may be held legal responsible for lack of 'duty of care' and chargers can be laid.
If you are the legal guardian and carer of someone with dementia and who knowily allow that person to drive or hand them the keys to the car, then you are liable in a court of law if that person has an accident and kills some one. But what about areas which are not so clear cut. Where is the line between the right to choice and a parents or careers 'duty if care'.
As a person with a physical disability there are laws that apply to only a person with my particular disabilities. As I have uncontrollable seizures I am by law prevented from driving a car. I would not chose to break that law. However, also mobilized using my power wheelchair. Usage of this chair means I must comply with the same laws as those driving a car.
So I can not legally go out and chose to drink like anyone my own age. Generally I am compliant with this law. I stick to my one legal drink known that may mean I over the limit due to other factors such as medication and what I have eaten. All in all I like to think I am pretty responsible with my consumption of alcohol.
However, what if I was in the company of a support worker, whose duty of care states she will ensure my safety. Does that worker have the right to stop me from buying the drink knowing it may put me over? Even I admit that's a difficult call. However, if I am using my manual chair I maintain I have the dame rights as anyone else over 18, I am yet to find a worker to agree. Not that I ever expect to test it, ultimately my personal budget is the restricting influence here.
So we see even though the National Disabilities Insurance scheme is designed to empower people living with disabilities and those who care for them, these choices as all choices do have limiting influences. However if any increased ability to make choices for our own lives opportunities to make bad choices and negative conquences of the these risks increase. To empower people to make choices for the own life or the lives of a family member or guardian, means we will see 'some people' at increase risk.
In terms of 'duty of care', many of the responsibilities of a parent are around the issues of safety, finical responsibility and legal responsibilities. No one is truly able to make any choice they wish. If parents are found to be irresponsible in their 'duty of care, their are government agency who can step in and protect children who are continually at risk.
Our choices are govern by laws.
For us as adults, parents and guardians one of the things that governs our choices are the 'laws of the land' In terms of guardianship of children we may be responsible for this like teaching our children 'right from wrong', to achieve this we use discipline. This enables our child to begin to established boundaries in their lives. The child begins to learn that bad behaviour or bad 'choices' will result in some type of punishment.However not all unpleasant experiences are the result of bad or incorrect choices. As a child learns to walk, the will fall over and collect their fair share of bruises. However if parents prevented their child from learn to walk out of fear they many be hurt and some how restrained them, then this would be deemed a fail in the 'duty of care' as a parent and the child protection agency would step in.
So the notion the we are free to make any choices we like is not founded. Of course every day people make bad choice and some people chose not to obey the law and this has consequences for them and the people around them.
I know a man who chose not to get a licences as a result whenever he drove the car and chose not to stop and the red traffic light, his wife would be fine and lose points on her licence. As a result eventually as a result of this man's choices his wife loss her licence and she had to appear in court.
Even though this man was not penterlise by the law his choices still had repercussions, as a result his wife could not drive for three months. So what happens to the right to make bad choices or even brake the law when their is proven diminished responsibility.
Do people still have the right to chose to break the law. I guess the simple answer is 'no'! There are many incidences in the course of our life span where adult guardianship is enforce legally on another and and as a result of that their may be times when the adult guardian may be held legal responsible for lack of 'duty of care' and chargers can be laid.
If you are the legal guardian and carer of someone with dementia and who knowily allow that person to drive or hand them the keys to the car, then you are liable in a court of law if that person has an accident and kills some one. But what about areas which are not so clear cut. Where is the line between the right to choice and a parents or careers 'duty if care'.
As a person with a physical disability there are laws that apply to only a person with my particular disabilities. As I have uncontrollable seizures I am by law prevented from driving a car. I would not chose to break that law. However, also mobilized using my power wheelchair. Usage of this chair means I must comply with the same laws as those driving a car.
So I can not legally go out and chose to drink like anyone my own age. Generally I am compliant with this law. I stick to my one legal drink known that may mean I over the limit due to other factors such as medication and what I have eaten. All in all I like to think I am pretty responsible with my consumption of alcohol.
However, what if I was in the company of a support worker, whose duty of care states she will ensure my safety. Does that worker have the right to stop me from buying the drink knowing it may put me over? Even I admit that's a difficult call. However, if I am using my manual chair I maintain I have the dame rights as anyone else over 18, I am yet to find a worker to agree. Not that I ever expect to test it, ultimately my personal budget is the restricting influence here.
So we see even though the National Disabilities Insurance scheme is designed to empower people living with disabilities and those who care for them, these choices as all choices do have limiting influences. However if any increased ability to make choices for our own lives opportunities to make bad choices and negative conquences of the these risks increase. To empower people to make choices for the own life or the lives of a family member or guardian, means we will see 'some people' at increase risk.
The right to choice under the NDIS
The National Disability Insurance Scheme is design to give people with disabilities and those who support them such as families great choice in the way they are supported and give greater emphases on individuals goals, personal, aspiration and lifestyle choices. When we think about what this change may mean for individuals, families or even those who currently live "in supported accommodation" our person concerns over the increase risk to vulnerable individuals, who maybe unable to make informed decisions (remember our ability to make choices is dependent both knowing and understanding all the choices available to us), we are looking through glasses that are tainted by an historical approach to the way people with disabilities have been "cared for" and "protected" until now.
Historical all people with disabilities have been 'cared for' by the state, and all attempts to provide for their care and protection have been insufficient. The concept that people living with disabilities will suddenly be "unprotected" or "at risk" because the now have a right to make choices for themselves is incorrect.
As we had seen, the choices we all make as individuals have a degree of 'risk' involved. I like to ask support workers how they got to work today. "Hurh!" is the usually response. What does this have to do with choice? "Did you "chose" to drive to work today? " Some will say it was the "only choice" they had." However the choice to drive or travel in a car puts anyone at anytime "at risk". Does that mean we should ban all cars in order to protect people from car accidents. Of course not!
More accidents on the road injury and kill people than anywhere else. Currently people living with disabilities who are either care for by a family member of someone paid to provided their care aren't given an option on how to travel. We as rational individuals, equip with knowledge and information make choices for people with disabilities in 'our care' all the time. Without realizing we are in fact putting people at 'risk'.
So I challenge the thinking around "risk" and the "fear of risk" that giving people choices and options for their lives under the NDIS may put people with "particularly those with intellectual disabilities" increases their risk. As we have seen there are protections up in place by governments to protect all of us as residents of Australia and they are called laws. Which the majority of Australians keep. As we have explored in terms of the 'duty of care' parents have for the children.
The introduction of the National Disability Insurance Scheme does not throw protect of individuals living with diminished intellectual compasticity due to their disability out the window, just because they will be more empowered to make choices for the own lives.
In fact part of the changes occurring under the NDIS is to introduce new laws and better protection for individuals living with disabilities in our society. That is one of the struggles we have that we are judging a new concept based on what we currently know. However despite what we think we currently understand about the NDIS how it make improve lives or disadvantage certain individuals, I think is skewed by our thinking on what the scheme is about.
The NDIS is not solely about providing the support needs and equipment needs of people living with disabilities and family members who care for them. That is the biggest misconception we need to address! While the scheme will now focus on the needs and the goals of individuals or families, the NDIS is for all Australians.
Primary the goal of the NDIS is to assist in the building of a inclusive society, where all of us are empowered to make choices. I think where the problem lies in our lack of understand at what level this occurs and the process and support people with all disabilities will be given to make those choices.
Yes people and their families are encouraged to take a 'wish list' into the NDIS, and I imagine that some of those things maybe, to move into my own home, knowing I can have a shower, when I want a shower. Or for an Austic child it might be, access to a phsyio, speech phologist. ot, support to attend school, transport to and from school, support to socialize outside of school hours and respite services for the parents, perhaps a family might ask for an assistance dog or communication device.
However, the first safety check is What goal does this 'wish' help the individual achieve. So an assistance dog, may provide an child with epilepsy, muscular dyspeptic or autism more independence from there parents and have some type of respite value. Currently I choose to address some health issues caused by my cerebral palsy via hydro therapy at my own expense. Under the NDIS this will be covered and a physio to assess ongoing changes to my program I need as I age. Currently is a guess and something is better than nothing, so that's a calculated risk I take by choosing not to have my therapy supervised.
So much of the discussion and debate has been around disability services and the hope for increased support hours, that we haven't stopped to think about the long term goals and how to address some costs associated with aging. In the long term government assistance with hydro costs mad help lower support workers costs as I age.
So the NDIS becomes an life span approach to supporting those with disabilities, rather than how do we meet the needs of an individual now. These things are difficult to comprehend for those or us who have only every received one type of choice to our precieve needs, far to often it has been individual support where an assistance dog may of given enough support and increased independence of the person thus being more cost effective.
More changes occur under the NDIS than a change in the way support is funded, so when our focus is redirected from the traditional care model we know, then giving people greater choice, may make more sense.
Initially the was some concerns about people choosing unqualified staff to provide support or services. How can we ensure standards are meet? An example of house modification for those who become disabled. The NDIS addresses this issue to require all service to be regesitered as NDIS providers. So if my wish of hydro thearpy is approved under the NDIS the hydro pool I access will need to be registered as a NDIS provider. The same applies to equipment, assistance's dogs and communication devices. I can not pay my neighbor to do the housework from my package unless she was registered as a provider.
So while the power of choice sounds high risk, new laws and safe guards have been introduce and most trail sights have seen an increase in service providers, not a decrease five months in no takeovers or closes have occurred. So may of our precived 'risks' in empower people to have choice in how their needs are meet. Are based on not understand the National Disability Insurgence Scheme, not only changes the game, by the goals or type of game we are playing. For all I know I might be talking about soccer and the National Disability Insurance Scheme might look more like a polo game.
We are basing our fears on 'what we know'; personal experience, personal insecurities, guesses, and misinformation. Humanily understandable, but not particularly helpful as we journey towards the transition.
The ability to make choice is dependant on knowing all the information and understand how those choices affect us as individuals, families, support workers, service providers and therapist or potential employers of people living with disabilities. In Queensland we don't have all the information yet, nor do I believe people have got their heads around the revolution in the way people needs will be meet in the future under the NDIS.
In this post I not begin to touch on advocacy, transport, access, justice, human rights issues, budgets cost or employment. The change are mind blowing and much more complex than we can currently address. How this will even become my guide book to the NDIS I do not know answers seem to lead to more questions. So clam down the jury is still out on the NDIS!
No comments:
Post a Comment