Making Choices

The Queensland Government has just released it Disability Action Plan to rolled out over the next five years, as we move towards the introduction of the National Disability Insurance Scheme which will bring all services for people with disabilities under on national banner.  For the first time the same eligibility cirtera and the same rules will apply to all Australians living with disabilities.  To check your eligibility under the National Disability Insurance scheme you should use the accessibility checker  on their website.

This is the single biggest change in disability sector since its introduction. Traditionally the sector has been underfunded and fragmented. In many areas in  Queensland receiving support has been liked to winning lotto. Packages seem to be awarded without rhythm or reason. 

People and families were given little choice or directions over their own lives. Once families secured support funding the child living with a disability there was very limited freedom and funding packages were tied to a geographical region, determining where people could live in come instances and which services people could access.

The most important change clients, families, caregivers, services and support workers need to understand is that from today we are moving gradually away from a system where most things for people with disabilities were decided from them by a government employee who didn't know them into an open market place which will be more transparent, create more opportunities, employ more support and more jobs. 

Where services are currently operated by the Queensland State Government these services will be sold to private corporations or absorbed into the structure of the National Disability Insurance Scheme by the end of 2019. Services currently operate under the not for profit disability sector will be in the main unaffected by this shift. 

That being said, the sector will now be govern by market place principles where consumers have the buying power and the ability to chooses service providers and the types of services they want to access. Those offering support services such as personal care, domestic assistance, community support, respite, and life skills programs, will now need to operate as a business to attract the customer base. 

It is now for people and their families living with disabilities to determine the ways in which they want to be supported, when they want to be support, and how often they want to be supported.  For service providers the choice is about how to better market the service they provide or whether the want to take this opportunity to transform and diversify you can offer any service you want, but it is not what your customer wants . . . the future is dim. 

As individual and families move towards making informed choices about their futures, the Queensland government has release seven areas of priorities. As we work towards the introduction of the NDIS in Queensland in 2016.

Historic changes and closer of government departments is not a push of the button. We need to change and adapt our thinking to the changing climate and make sure every one in the community - all Australians understand how the introduction of the National Disability Insurance Scheme will affect them, their family, their workplace, and the community as a whole.

The only way to ensure a successful transition to the National Disability Insurance Scheme is to get our house in order now.

The Queensland Governments priorities as we walk towards is introduction are:-  

1. Support people living with disabilities and communities to be informed and confident in understanding in what the NDIS means for them.
2. Support people with disabilities, their families and carers to exercise choice and take up new opportunities.
3. Support non-government disability support services to operate competitive in a open market environment
4. Develop a strong skills based workforce. Services need to employ professional support workers and paid award rates.  They are now in the customer service industry.  Support workers are a service sale point. People living with disability deserve quality support.
5. Prepare for Queensland Government Departments to transition disability funding and services to the National Disability Insurance Scheme peak body.
6. Enhance mainstream services and facilitate to enhance geniune choice and participation in all areas. Including education, employment, justice system. health and housing.
7. Promote participation in the community.

The changes we seek to create not only turn the tables on the disability support sector but will have an impact on all levels of society and the communities in which we live.

It is challenge the way we provide education and the ways we teach, it will challenge our transport system and demand people living with disabilities can and do use public transport; It will challenge and demand the workplaces become accessible to all Australian - looking at things such as physical access, visual access, IT access, sensory access and those with behavioural challenges. It will challenge and demand reform to our legal system,  beginning will challenging the right for those with intellectual disabilities to have the same citizen rights as all Australian and an end to automatic disqualification from voting, and access to the justice system. Lack of access to the justice system has allow systemic abuse of people with intellectual disabilities and dis-empowerment.  We need to find was to make our justice system accessible;e and present the law and political climate in a way that everyone gains and understanding and is truly protected and we urgently need to address the lack of accessible accommodation and the living conditions of young people living in nursing homes.

Any one who is still tempered to think this is a mere changing in funding arrangement is in for a rude awakening. .  

Dreaming of Possibilities

Deb's Rave!

The hopes and dreams that the National Disability Insurance Scheme will bring for people living with disabilities and those who provide unpaid care, seems to balance on a uneven seesaw. What I am beginning to see emerge is that different agreements that have between different states and territories, and the Federal Government, sees a different approach to disability care, being adopted around the country.  A reality I find disheartening, when the principle underlying the NDIS campaign was a universal approach to supporting people living with disability and greater access to choice regardless of whether people live in Hobart Tassimia or Alice Springs in the Northern Territory.  

So the anticipated mistrust of governments ability to deliver a disability support system that people living with disability and their families, unpaid careers and those who seek to support them on a daily basis were well-grounded. 

What was known from the outset, under the recommendation of the productivity report, was there was to be a nation wide shake-up to the eligibility criteria . With the promised the more people with disabilities and their primary careers would be eligible for support and the state-by-state regulations on supported career and accommodation would cease with individuals and families to be offered greater choice and flexibility in the way the receive that support.  That was the very essences of the National Disability Insurance Scheme campaign, a principle that disability advocates will not be negotiating.

The scheme must deliver a universal approach to supporting those living with disabilities and those who career for them.  In the push towards early intervention, fostering independence, the needs of families and those who care for them seems forgotten.  Loss in the former labor governments push towards priorities such as employment.    

While I cheer on reform that is founded on social inclusion, real employment opportunities and equality, these much not be at the expense of providing esscentual respite care and providing support to the family unit the live with  24 hours needs of a love one.  Everyone has a breaking point and everyone needs a brake and end to residential respite does not provide that break.

No one wants separation in any form but the reality is that unpaid career like every other Australian, has a right to annual leave.  The absence of being paid does not remove need.  We can debate all we like about what people with liabilities need, what the like, how to define choice, how do we create choice, how do people with disabilities make informed choices after a lifetime with out choosing basic things like the color of their toothbrush, what they want for lunch and what the will wear on any given day.  

As we face the road to a fully operational National Disability Insurance Scheme that delivers full equality to people living with disability and their significant others the challenges to ensure everyone has the same degree of choice regardless of type of disability, lifestyle and postcode are enormous!

The principles of the National Disability Insurance Scheme are not as secured as various governments have assured us.  We as the voice of those who can not speak must not be silence or rest. The right to choice must be secured for every Australia. Every Australian has the humane right to have their rights meet. 

Roles in Disability Care Australia

In the disability sector the most vital role is the relationship between their support worker and the clients they work with. In the main the introduction of NDIS now known as Disability Care Australia, these already established relationships and relationships the will be introduced will be relatively under changed, where these  Client/worker relationship built on well grounded polices and procedures will continue unchanged.

In Queensland in preparation for the introduction of the NDIS in 2016 some clients who already receive packages through Disability services have switched to self-directed funding,  under this arrangement with the state government clients and/or their adult guardian have a greater say in how they  use their funding .

This funding is allocated under the Queensland Government's Growing Stronger Program. Where greater emphasis is placed on client choice. My life! My choice! Is  the principle that underlines this funding and much of the funding that will be distributed under Disability Care Australia. If you have not been contacted by the Department of Disabilities Services of you service provider to change to this new fund system, then for now how you use your support will remain unchanged.

My life! My choice! Gives clients and families three different models that enables them to be more empowered to make choices around their daily living needs and support goals. Eventually all people with disabilities living in Australia will be able to do this.

However this is a huge shift in thinking for everyone involve. We need to take slow steps to allow these changes to take place, understand what the mean for clients, families, carers, guardians, the adult guardian board, support workers, service providers, the dismantlement of the Department of Communities, the staff and all people working in the sector.  The changes are a few years away, but now is the to discuss what these changes mean for us as individuals and collectively.

Any change creates uncertainty, this uncertainty use in the right way can be a powerful tool. Or we can let this uncertainty be ruled by fear leading to a state of confusion. The introduction of  Growing Stronger and later Disability Care Australia is simple to give people as greater say in the life style choices.

Both systems allow this to occur in a number of ways:

1. Structurally it is predicted that many clients and families will chose not to make any changes in how the are supported and who they are support by.  For these people the greatest joy maybe to know the equipment needs will be meet.
2. Then there's a group of clients who would like a greater say in who supports them, when they are supported, how often they are supported and how they wanted to be support. Currently they may go bowling on a Saturday morning, they might decide they now like to go fishing on Saturdays or the want to attend a respite center to make new friends. This is about real people making real choices for their lives. The people chose a provider to 'host' the package on their behalf and disperse funds to produces the services the clients want from one or more service  providers.
3. It is expected that only a small number of people will chose to apply for an ABN and completely self-manage package.  This means rather than use staff from an existing service provider such as the Cerebral Palsy  League or the Endeavor Foundation, clients will advertise, interview, train and employ their own staff.  These people will be subjected to the same rules and regulations as all small business owners and bound to maintain the disability standard.

So you see while on the surface level, service delivery appearance will look the same, the governing principles and governance model will undergo significant change.  The word governance is the decision making process around what a support system will look like.  Until now this governance roll in Queensland has been undertaken by the department of Communities Disability Services, Board members of Service Providers and Case Workers, Community Linking Officers and Client Coordinators.

Only now as self-directed funding is being offered can families and clients say, I don't want 10 hours in home support, what I need is 5 hours in hours per week to assist with personal care, landry and meals preparation  and I like to use the other 5 hours to be support do a TAFE  course. In order to change the way people with disabilities are being supported some people will meed to look for new support providers. 

This is a major shift in thinking and methodology for case workers and coordinators. People who have previously been employed to design, write and implement support plans, with only assist in the writing and implementation.  The days when someone working for a service provider decides a client will spend 'x' number of hours at a shopping centre are thanking ending. Where traditionally support workers have felt the need to prompt or decide activities for clients, these types of governance decisions will be directly made by clients, a family member or appointed caregiver or guardian. 

More than ever before support workers must be able to make the shift from a more traditional role of 'a paid carer' to support worker.  A support workers role is to enable a person to achieve the goals.  The days when client are only receiving support as respite care for the caregiver(s) in their lives are ending.  Under the watch of Disability Care Australia all support will be linked to the goals the person wants to achieve.  

If that goal is to be able to make themselves a sandwich for lunch the support worker will find it hard to defend taking a client to a movie.  People with disabilities want and enjoy the same things as everybody else.  With the right to make decisions about how the will spend their time to comes responsibility. Where a client lives independently and chooses to go bowling instead of doing the shopping when supported, then lack of choices of things to eat is the consequences.

Many of us like to protect others from harm and making mistakes, NDIS or Disability Care recognizes that even people with disabilities have the right to make mistake, bad choices even where they can be harmful. Support Workers will no longer be directly the client through the daily routine.  The client will decided if the have a shower at the start or the end of the shift, they may chose to do both and they may chose even not to have a shower.  It is their life and their choice.  It is not the role of the worker to make judgments on how the person asks to be supported. 

Many workers who have worker in the sector for many years will struggle with this change in governance, for those accustom to making decisions for the people they support this will be difficult.  While some clients and families are very happy with how they are supported now, many tell us, they want to decide what type of voluntary work the like to do, to go ice staking rather than swimming. Under NDIS individualized support is set to become even more individualized. 

Workers who unable to adapt to a change in governance will struggle to please the clients. As we saw yesterday that means they may struggle to keep their employment. 

Disability Care Australia comes to Queensland

Taken by Judy Dickson on behalf of ALARA Association. 

Yesterday I was privileged to witness the combination of many years of hard work and determination by people with disabilities, their families and those who care for them.  As Julia Gilard an Campbell  Newman signed the historic agreement between the State Government of Queensland and the Australia Federal Government. 

To people with disability and their families this is about much more than funding to meet their day to day needs.  While by 2019 some additional 50,000 families in Queensland will have their support needs meet for the first time.  The real victory for NDIS campaigners in the revolutionary thinking build this world class system. 

Like landrights for indigenous Australians and women gaining the right to vote, for the first time our leaders have acknowledge our right to the quality of life other Australians enjoy.  The legislation looks specifically at real inclusion for people with disability for the first time.

Its a long road head until the 50 000 Queenslanders who currently have no assistance receive the help they have hounded the Queensland government for decades. But certainly the signing yesterday was caused for celebration.  

While for some its a case of too late, the real work and challenge for service providers is ahead as we make the shift from service provision to a true market place where people are empowered to make choices about their lifestyles.

So to does the challenge of bring about community awareness.  What is disability?  How does it impact the lives of  those affected? What are the true abilities of these people to contribute in real and meaningful ways to our society.  The real challenge for us is  the challenge to long term attitudes towards people like myself who had enough of watching life from sidelines.  Its our time to join in and enjoy all that life has to offer to leave the house!  To go to work or study.  To be creative and use the same innovations we use to create and design the NDIS to create small business and design technologies. 

History in the making as documents are signed 

to allow the Introduction of Disabilities Care Australia. 

             

Plugging Holes in the NDIS

Growing up I remember the tale of a young Dutch boy who placed his finger in a hole of a Dutch dike to save his homeland from being drowned by the sea on the other side of the wall. I assume at the time it was only a small hole that could be plugged by the size of a small child’s finger.  The trouble is the small holes left unchecked and not repaired can grow into larger holes creating a potential disaster.

Boundaries as I was explaining on Tuesday last week are ‘the fences’ or in this case a wall; that protect us from potential harm or abuse.  For clients and workers in the disability sector these are known as polices and procedures. Each of these links back to the laws that are unpinned by the Queensland or Federal Government’s legislation that protect the human rights of people living with significant disabilities and their families and carers.

These are also known as the Disabilities Standards, As we look forward to the introduction of the NDIS or Disability Care Australia, these standards are underpinned by the Human Rights of people with a disability by the United Nations.  In other words polices makers from the federal government down to me as a board member who is responsible for overseeing my organisations polices and procedures are written and abided by are govern by the charter of the UN Human Rights.

None of us truly live independent lives just as I am dependent on the assistance of support workers to meet some of my needs to get out the door for work in the morning, so too are we dependent on others to protect us from harm, neglect or abuse. These are important principles for clients, families, carer’s, guardians and support workers to grasp as we move away from the traditional model’s of service provision to a more open market of service delivery, which will from July 1 this year start to drive the choice of how people with disabilities and families meet their own support needs as the work towards full community participation and economic equality.

The NDIS revolution as set out by the Productivity Commission is designed to do much more than provide the support and equipment needs of people with disabilities and yet in the discussions I’ve been involve in so far; how does the NDIS or Disability Care Australia meet my needs or the needs of my child or clients. As we begin this journey over the next 5 years, this for many the have repetitively been failed by state governments over 5 to 6 decades is right so the first question being asked ‘how can I be sure my needs or the needs of my child/client be meet.   

This is a question the current ‘needs’ based funding has trained us to ask. The governments have failed to meet my/our needs for decades. What makes the new system of Disability Care any different? I have no doubt after reading the legislation under NDIS some people with disabilities and their families are going to be disappointed with what the system provides for them.  The words ‘permanent’, ‘stable’ and ‘serve’ point to uncertainly around the question of eligibility.

However the NDIS is not ‘needs’ driven but ‘goals’ driven, the very premise of disability care is about to be turned on its head and yes, for many of us that is scary. It involves a journey into the unknown and still many holes in the framework in which we will be required to work with in remain unplugged, some of the natural safeguards that protect clients from abuse have been removed.  We can not give people with disabilities the real choices they’re asking for without introducing risks. As we have seen all choices have conquences which lie with the decision maker not law enforcements.

As clients and families take greater control over the futures and services relinquish there traditional guardians roles, the risks become greater. The traditional mechanisms such as workers entitlements, awards wages, worker health and safety regulates, risk management, equipment checks and repairs, and even home modifications may now be the responsibility of the service user rather than the providers.

Not only does the NDIS promise to give people with disabilities greater choices about meeting their needs and lifestyles choices around how to meet those, For example greater choice around accommodation, how to meet their individual accommodation needs but it also allows them a voice about the postcode.  Traditionally those with high needs support have been house to close together for funding reasons.  Now people with disabilities are saying I want to live on the Gold Coast not in Brisbane. Everyone else has the right to make that choice and I want the same opportunity to live where I chose. I don’t want to be govern by where I must access the services to meet the needs associated with my disability.

To enable people with disabilities and the people that support them to determine their own lifestyle choice the NDIS has shifted the goal post. Services will be required to delivery services where the client and families needs to access them rather than require clients to travel. This is what we mean by ‘service delivery must become market driven’.  There no use setting up shop in Alice Springs if no one wants to by your goods.

In its quest to offer people more flexibility in the lifestyle choices, the federal government has responded by introduction flexibility in the way people with disabilities and their families can access the provision and delivery of their needs.

Disability Care Australia will offer three different service models

·       ‘Traditional’ ─ where the family or client will go to a website or shop front that lists all the services that offer to meet their needs and they will choice what suits them and the current goals and lifestyle. For some of these people the delivery of their services will remain the same.  Only who is paying the bill will change.  Others may chose to only change a provider or some delivery services changes to better suit their needs and goals. This is their choice and for many it gives them what they want. However others tell us they want a great say in meeting their needs, so these people may choice . . .

·       ‘The middle ground’ ─ Some where between giving all their funding to a service to provider or providers to meed all the request needs and having no responsibility for the organisational and administration for their funds.  This model has a middle person between them and the service provider that can give assistance and guidance in the areas their not sure on like employment of staff, worker compensational, repairs and maintenances of mobility and communication aids and referrals to professionals such as a speech therapist. The person or organisation will be responsible for this like quarterly reports to the Disability Care Australian office to say you have spent your money how you agreed to spend and not on a family holiday to Fiji or a new play station.

·       ‘Autonomous self-direction’ ─ will be where an agreed amount of money is payed to an individual or family by Disability Care Australia.  That individual then becomes an employer, who directly employs support workers and therapist themselves. Choosing this method of service delivery means, the person or family is responsible for training, safety standards, wages, sick leave, workers compensation, public liberty and meeting industry standards. The people need to write their quarterly reports to the Disability Care Australian office to say you have spent the money how they agreed to spend and not on a tree house of a red luxury car.

Remember the person or persons now making the choices become responsible for the results of those choices.  If you employ a support worker who drives your child to and from school in a car that in not road worthy resulting in a car accident, an absence of a road worthy certificate, results in a default in the insurance payment. You are left with your child has major injuries and you need time off work. No insurance is a result of you as a employer not doing a road worthy on staff cars.  You choosing to cut corners you are left to deal with the results. No service provider to run too.          

We as governments and service providers only have ten fingers. Human rights and the laws that protect them can on plug ten wholes.  If your creating and eleventh or twelfth holes by not having public liability insurance or not enforcing safety procedures the holes allow crack and crack without repairs grow bigger and sooner or later the wall crumbles and there’s no safety net.

I know because in the past I have failed to put putty in the hole before cracks appeared and pay the emotional toll. As the NDIS rolls out and more people make the choice to take direction over their funding, both support workers and clients need to carefully navigate the pot holes in the road.  The third umpire to ensure correct policies and procedures are followed has been removed. However, that’s what equality in.  No one makes my sister get up and get the kids off to school and then drive to work if she sleeps in being self employed she loses sales.

In my next post I might tell you about some of the cracks in the fall that can occur when you don’t put putty in the holes.  

Revolutionary Thinking

As we march towards the introduction of the Disability Care Australian (formally known as the NDIS) we must ask ourselves if we as Australian’s are really mature enough to reorganised the true value of human life.  Are we ready to stand up and shout to the world that every life has equal value regardless of the peoples abilities.

This human rights statement is the driving force behind the NDIS campaign. For people with disabilities its not about the money, but the dream to belong. Sure, we want our basic needs and rights meet.  We are demanding equal standards of living, no one under the age of 60 should be force to live in a nurse home because, that is the only way the tax payer will fund 24 hour care,

For us the realization of the NDIS is about real inclusion for people with disabilities; their families and carers. The fundamentals that drive the NDIS legislation is not a funding reform.  Funding reforms in themselves can only hope to produce more income to support a growing population of people with disabilities.

The Australian Governments decision to introduce the NDIS into parliament is a recognitizies  of the rights of all people with a disability and their families, not just those who can like me voice the needs, desires and goals.  The start of Disability Care Australian on July 1 is not based on needs as various funding systems have done in the past, but the goals of people with disabilities and their families.

Almost universally, these people tells us that their individual goals are linked to their desired for social inclusion.  For many that’s the goal to live in a community of their choice and not to have some government department make that decision based on determine needs and service availability.  Disability Care recognises people with disabilities have the same rights to services regardless of whether the person and/or their families live in Hobart in Tasmania or Lismore in country NSW.  Services and equipment needs to be available where people live not centralized and capitalized in major Australia cities.

However are ordinary Aussies ready to make this fundamental shift in attitude from ‘caring’ for people with disabilities to ‘providing the care and support to enable people with disabilities to fully participate’ in our Australian lifestyle?  Because that ladies and gentlemen is what this piece of legislation demands.

After a week of debate, argument and opinion polls by television and radio programs, I’m not sure we in Australia have that type of maturity, although I hope we find it soon.  When we have the CEO of one of the finest retail companies in Australian claiming an increase in the medicare levy of 0.5% with hurt his companies bottom-line. Then it is plausible to draw conclusions about current attitudes to those with disabilities and their ability to full engaged in Australian society. We are neither seen as taxpayers nor consumers.

The look on the sales assistance face said it all, “Why are you letting her look at a $200 pair of shoes.” I am just a poor disable girl about to earn $55 hour. I definitely can’t afford to buy those shoes, nor would I appreciate there value.  Stereotypes are a strongly held as ever and its going to take more than the Prime Minster signature on a whitepaper to change this ingrained attitude that all people with CP have intellectual disabilities.  Poor thing stuck in a retail job at 55 because she was able to get a degree like me.  I really do feel sorry of these people without degrees and ability to challenge social norms.

I was not the only one on the receiving end of this attitude yesterday, as I sort out a lifestyle our Prime Minister states we are entitle too yesterday.  My friend and fellow top 200 Leaders with a disabilities in Australia Maralene encounter the same.  Poor dear with CP busking with a jumping castles (Do you know how much those thing costs to run an hour?)  Poor dear lets give her 10 cents.  Bloody hell that doesn’t get the thing in the truck let alone the fuel – a total insult to this future leader of our country.

These are the attitudes that stand in the way of the best chance to revolutionised disability care since federation!

       

Is it time to rethink disability?

Disability should not be a barrier to employment!

The introduction of the NDIS legislation and the discussions around its introduction and how the scheme will be administrated, has highlighted to me is the numerous misconceptions in the community about people with disabilities.

From Cape York to Hobart the needs and support people with disability and the families and full-time carers, vary considerably. My last post was called From welfare to community engagement, highlighted one of the predicted flow-ons of the NDIS was increased community participation for people with a disability and their families.

When we talk about this disability, what images each of us sees in our mind is very different depending on our life experience.  With 4 million Australian's experiencing some type of disability changes are that each of us knows someone with a disabilities.  However, no everyone with a disabilities will requires support.  The NDIS is designed to assist those people who require assistance to complete daily living tasks through funding for equipment to assist with mobility and communication, early intervention programs, access to respite care services and medical care that is additional to costs provide to by the medicare system.

Despite the hopes and perceptions of some pockets of the disability community the NDIS will not be giving anyone a direct payment.  To that end the use of the word 'insurance' has for some been misleading.  The notion that a person will be able to share their funding for mobility aids with 'the mob' is unfounded. It angers me that the media has even allowed these stories to be circulated. There is enough confusion and public education that needs to occur with out the media running these types of stories.

Rightly so there are many questions concerning the set up costs and the full cost to the Australian tax payer. I have read and head many different figures and projects in the last 12 months.  But until the trial is fully operational I suspect may figures to be tossed around. The current government costings through the Productivity Commission estimates a fully functional NDIS will cost an additional $6.3 billion per year to what us already being spent.

However for all governments public spending is a balancing act and in terms of the NDIS what isn't being discussed at least in the media is the savings to the community as people with disabilities move away form the tradition welfare system toward community engagement.  There is a wide spread misconception that people with disabilities are non employable and the costs of workplace modifications are not cost effect, despite research study after research study showing employees with a disability take less leave and experience lees workplace accidents.

In terms of gaining employment the physical and attitudinal barriers are insurmountable for the majority of us. This is certainly my own experience.  I certainly don't challenge the conciseness, that I am unemployable in the traditional workforce due to my seizure disorder. However, like a percentage of people with disability I am an underutilized resource and self-employment at a part-time level is achievable.  A fact highlighted by my participation in the Leaders For Tomorrow Training Program.

My employment barriers are attitudinal, even as an unpaid volunteer community attitudes and assumptions frustrate me.  My management role in the disability sector creates confusion and yet also opens up opportunities to educate those who should be most aware.  Many times until I am introduced as the Vice-President of the organization it is assumed I am a client and/or I have an intellectual disability. This attitudes frustrate me as I am constantly needing to verbalize my CV before I conduct business transitions, which is why I love not having those barriers while working online.

Pictures of peoples with disabilities in their working places being posted online how much public education is yet to be achieve. 

So how about you? Is it time for you to look at what disability is? Let me assure you people with disabilities don't need handouts. We want to engage in the community. Are you ready to help provide that opportunity? 

     

    

My home

The Journey Home

I remember when I was growing, probably around the age of 12. I thought a lot about the future and what it might look like.  Some of my dreams like making a deal that my best friend and I would share a house seems so crazy now. Other dreams like buying my first car, were possible at the time, but life changes and unexpected things happen. 

My first 'home' of taste of independence was living on campus while studying for my arts degree. At this stage the car thing still hadn't happen as my focus was on getting my degree to get a job, to buy my car. Which was pretty much the story with most uni students.  Besides at the time my boyfriend had a car (for what it was worth, it soon fell apart and was off the road.)

I knew I had a disability which at times cramp my style but at 20 I was still living a life no different to my friends although the boyfriend had ditched me by this stage.  After uni I decided psychology was never going to be my thing and I begun working as a Christian Youth Worker and had my first taste of 'house sharing', still no car.

And then . . . About September the year after I graduated I got sick! At the time the doctors just thought I had a virus, little did I expect to spend the next 10 years of my life sick and develop clinical depression with my weight dropping 45 kgs and eating a chocolate bar would become a major battle.  I quit work and move back home with my parents . . . It was 'home' but not the 'home' I deamt of at 12 years of age.  I was disparately unhappy and wanted a life of my own, without my parents rules.

By then I had learned that I never would be buying my first car.  I had acquired  my third disability epilepsy and as my seizure remain uncontrollable by 25 I knew I would never be able to drive a car and many believe I would never be able to live independently.

It was during this time I became a writer and was writing for a small independent Christian publisher and would eventually publish my first to poetry  book with. And so I realized I had achieved another childhood dream which was to write a book. 

It was quiet the book I saw when I envision writing a book at 16, but it was a book and would be the first of 5 books I would publish.  I co-wrote a devotional book of poetry around the same time.

Eventually there was an opportunity to apply for a department of housing accommodation designed for people with disabilities and at 29 I was 'home'. I was renting a 1 bedroom unit from department. My dream I had a 12 to have my own place had become a reality.  

Today, 15 years later I still live independently in my own home with 22 hours a week in home support through various agencies. 

But my 'journey home', is very different to hundreds of adults with disabilities living around Australia. The truth is I encountered little resistance to build an independent life for myself. I am an exception to the rule.  Inch by inch I have fraught to kept my independence. Only now am I learning of the few choices people with disabilities and the chronically ill have in terms of accommodation. Their journey home is all to often enforced on them by others.

Current there is over 6000 young people with disabilities under the age of 50 calling nursing homes 'home'. These figures do not account for the number of people living in 'group homes' or with relatives against their wishes.

Independent Living options the Young Care is one of the few
options for young people with a disability.

The official Department of Communities policy known as Growing Strong. The rhetoric begins with Your Life, Your Choice!   For the the 100's of Queenslanders living in nurses homes, and their families, their are no alternatives for those needing 24 hr assistance.  The Young Care alternative is individual independent units for those with disabilities that still allow them to have some level of independence for the majority of the day, while having 24hrs on site assistance when it is required and I am aware that there similar accommodation arrangements available through Uniting Care and the Cerebral Palsy League.   .

Somewhere between Nursing Homes and Young Care sits what we term 'Group Homes'.  These 'homes' are shared by a number of people with disabilities who require a high level of care. The homes are 'staffed' 24/7, with staff often making daily choices for their clients. While often the decision for a person moving into a 'group home' is made by a parent of guardian, under the current department of Communities regulations, a person can be force into a group home because funding for that individual to live independently is denied. As we saw previously with Rosy.

'Remember Rosy's fight with the department'

   The choices for young people living with a disability and those with chronic illness remain very limited. If you'd like to help build more accommodation options for these people you make a donation through  Young Care or Building Better Lives click on the links. 

Of course the introduction of the National Disability Insurance Scheme  (NDIS) is home to go along way towards addressing the accommodation needs of young people with disability and established them in independent lives. With the Federal Election looming and the legislation  only being in draft from, these are worrying times not one those searching for accommodation options but all people with a disability and their families.   

After years of campaigning  the continuing steps towards the full introduction of the NDIS hangs on a knife edge. These reforms and the accommodation needs of people with a disabilities needs to be high on the political agenda and debated vigorously through the election campaign in order to ensure more and more people with a disability can find their way home.              

My Life! My Choice!

Rosy's Fight Continues  

My Life! My Choice is scribble across every document that I read on the governments current disability brochures! However these words are only true, if you tick the Departments boxes, that I yet to find any fits. These word are certainly not true for Rosy, as the department of communities are asking her to move from her own home to a group home on Sunshine Coast. One fails to comprehend what part of this is Rosy choice and why she would want to live 2 hours away from the TAFE she attends.

In the article published today in the local Sunshine Coast paper. The department claims to be working with Rosy as her emergency funding is not sustainable.  Hello! What is the department doing using emergency fund, when this lady needs a full time support package!  It is obvious is was appointed in appropriated funding in the first place, if it has continued to needed to be topped up.

Once again the department has failed in its duty of care to carry out future planning with their client.  Despite all their claims a consulting process does not exist. Funding is assigned according to what you can't do. Not what you want to do.  The policy should be called Your Life! Our Rules!

OK so maybe that's a bit unfair of me, here's the choice I was given 14.5 hrs per week or risks dying!  Some choice! I actually yet 22 hours a week support by supplementing it with some HACC funding . So tell me Mr Newmann how is it that I can get more funding than this lady?  Tell where the funding system is working.  Tell Rosy she has choices about her life. 

Why are we told one thing when the reality is completely different.  Own up and admit people with disabilities have no say and no rights about lifestyle choices.

The assessment process in outdated; funding is incorrectly assigned, policies are not meet, even the department admits best practices are unattainable and the reality the department as half the funding it needs just to operate!  Tell me what part of the wheel works.

Please share Rosy story, the human rights commission said Rosy rights are being violated. Rosy has no time to wait until the NDIS is introduced.  Come stand with Rosy and tell the department It's her life! It's her Choice! .       

Choices

You’re life! You’re Choice! Is the name scribble across the document Your Choice, but these words are meaningless to hundreds of Queenslanders with a disability and their families who struggle to gain the support just for the basics needs, like a support worker to get them out of bed.  Make no mistake the disability funding system in Queensland is critical ill and has been for 20 years.

It a System where the needs of people with disabilities and there families by the departments our admission can not be meet by current funding levels. Consecutive Queensland State Governments and policies makers have failed in there attempts to address the growing needs support needs of people with disabilities.

From my view vantage polices made surrounding the needs of people with disabilities swing from individuals having power over decision making process back to organisations being the major stakeholder in the decision making process.

Despite the rhetoric under the current “Growing Stronger System” the decision making processes that surround our lifestyle choices and support needs, lay at the feet of public servants making and currently in Queensland may positions are being axed, its a frighten time to be living in the state. Decisions about our personal lives with a file no. due to privacy our names are not on files.  In a true reality people with disabilities support needs are reduce to a dollar amount attached to a faceless number on a file. See (     A better disability system) for relevant documents.

Recently I was speaking to a Senator about the NDIS before Campbell Newmann made a half-hearted bid to support the introduction of the NDIS. It at these times I want to throw my hands in the air and say ‘there are no answers’; to ensure individuals with a disability have the right to identify and be supported to gain a lifestyle of their choosing.

The senator informed me that per head of capture a people with a disability receives on average $2000 per head, per year. If the government is spending around $20 000 per year on my care that’s 6 to 8 people with disabilities and their families that receive nothing at all.

The current system is at such a crisis point in Queensland that many public servants in the department admit its is irreparable.  While the State government remains primary responsible for the care of people with disabilities, it at best can only offer a few band-aids of inappropriate care.

From the late 1970’s when our larger care institutions close its door, the Queensland government had it wrong from day one and thus has struggled ever since to correct the balance to provide support to everyone who needs too. In the main the department was originally support people with a disability to move out of institutional care and living in the community.  These costs were hugely over estimated resulting individuals given amounts of money they could never spend. However, initially the money was assigned to individuals and was not attempted to be based on individual need.  So people previously living in state care were assign packages that don’t need, don’t used and can’t be taken from them. The people given life time packages in late 1970’s and 1980’s under then legislation retrain their funding until their death, until the time of their passing the money sits in a government bank account. Thankfully that kind of rational and individual lifestyle packages no longer granted.

This fundamental floor was compounded by a failure to include in its a system that catered from people with a disability not previously living in state care, people born after 1980 with a disability or those who acquired a disability during their lifetime. Is it any wonder a system founded on two fundamental floors is irreparable?

By its own admission the current system of disability support is layered system where individuals are locked into rules the funding system which they were originally granted funding. Under such a fractured arrangement funding can never fairly be divided. No wonder there is opposition to the NDIS and a healthy sense of skepticism.  

So lays the misconception the all people with a disability are funded on a level playing flied and if you need help you get it. The truth is gaining a faction of the help needed, is like winning the lotto!’ I wouldn’t pretend to able to explain to you in any more detail how funding is structured, this comes from my own very limited understanding.

My point is to dispel the notion that Queenslanders with a disability have the same ability to make lifestyle choices as my readers.  Most of us like to think we have a choice in where we live and the type of accommodation, to my horror I discovered this is not presently the case for people with a disability in Queensland, who have high level care needs.

For those needing more than 8 hours per day support, choices increasingly become limited.  Last night I learnt of the plight of a young women of a disability who has increased support needs and has been offered a placement in a group home hours from her current home, because ‘that’s where a place  is available. If she declines the offer she losses all existing supports, including assistance to get out of bed in the morning.   Not only is this women about to loss her ‘own home’ and her independence but she will be removed for her ‘natural support networks’ and existing friends.    

No consultation and no choices, rather blackmail move or receive no support at all. I admit this is here say and I have no details of how the miscarry of justice has occurred. I can only stab in the dark to say she has no individualized funding and it is linked, like my to the service provider. Gone are the days where offers must be in a set geographical area.  My community link officer has said she had to offer people living in Ipswich placement in a day service in Toowoomba knowing it is impractical.  As to how they can legally withdraw current services from this poor lady, I am unsure. All I know under the growing stronger legislation people with disabilities seem dis-empowered to make choices about their own lives.

I am hoping to write a series of ‘posts’ aim at helping others outside ‘the system’ to understand our plight. The disability system is without rhythm or reason.  If you have a questions please let a comment if there is an answer I’ll track it down but often the an answer defy logic. . . Welcome to our world.