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. 

Access for All Australians

Last week I attended Arts Access Australia’s “Arts and Disability Meeting Place” in Hobart, where I heard the term, “Access for all Australians” used for the first time.  But what does the term mean? 

It quiet simply means creating a society that all Australians can enjoy at every stage of life. For too long in this country we have scene “access issues” as a issue for those experiencing a physical disability.

During the day we also discussed ‘language’, the use of language when referring to someone with an impairment or mental illness can also have a disabling effect as I discovered recently. So when we begin to talk about ‘Access for all Australians’, we can achieve both objectives.  In terms of addressing access issues un general if we determine to create a society which all of us can access at anytime, we remove the need to use language that needs to label others are different to the norm.

In a truly inclusive society everyone has equal access to buildings, employment, education, sporting opportunities, leisure, the arts, community venues, newspapers, the internet, housing, transport, health care and the list goes on.  In such a society there would be need to find terms to label and identify those who may be different to ourselves.

Since we are yet to achieve a society that is even remotely inclusive for all Australians for the purpose of this discussion please excuse me if I use terminology that you personal find isolating,  correct and inclusive language is a whole another debate and I find people who have a permeate impairment that affects their ability to function in some capacity, like to identify themselves in a number of different was and many choose not to identify as having an impairment for fear of being judged, mistreat or isolated for this reason.

Recently this has been particularly true in the Arts in Australian at present with the release of the Cultural framework policies.  But this is not a language debate but a debate on giving all 

Australians true access to all aspects of our cultural community.  The reality is each of us at some point in our life face an access barrier to something.  Not to experiences some type of barrier at some point would be highly unlikely.

Sadly when we being to dialogue about access we all think of the obvious, the stairs, ramps, footpaths, buildings, transport and toilets, but access is deny in so many other ways.  Language is a larger barrier for many Australians and rarely discussed.

Language whether it is written, read or spoken is difficult for millions of Australians. Reading or accessing technology dependent on a persons ability to read if a barrier for a cross section of Australians.  We often underestimate how much we read.  So much of our lives are direct by signs and instructions.  The inability to read either caused by English being a second language, learning difficulties, lack of education opportunities, undiagnosed learning impairments, lack of access to eye care, visual impairments and often laziness to read instructions and signs can all prove barriers to many in our community, unless all these barriers are address we do not live in a society that gives equal access to all Australians.

This access to written information or visual stimulation may be permanent or temporal as in the case of someone learning English.  In our society most signs are written in English, to have signs written in every language would be a logistical nightmare. There are those for other reasons who can not read and will never be able to read.  The challenge then is how do we make information accessible to them. 

Even those who can access written language may still experience language barriers due to an inability to write, speak, hear or a combination of these impairments. Even I with a mild speech impairment and dyslexia with my university education still experience some level of barriers in terms of language and communication, especially when it involves a telephone and an impatience person on the other end of a telephone.

Even within what we like to label mainstream society, we have subcultures with their own ‘lingo’ I’ll leave you to Google that one just to prove my point of the many different language barriers that prevent all Australians from having equal access to all areas of life.

Hopefully I am starting to defuse the myths that access is an issue of primarily concern of those living with some level of temporary or permeate impairment. You may of noticed I been referring to temporary impairments, unlike other issues or needs of those living with permeate disabilities access or lack of access with create barriers for each of us. 

Written and spoken language is a great example as we look across a persons lifespan as we experience different levels of access to language at different ages for many reasons.  A child must learn to talk and read & write before the can fully communicate in an adult world. At the opposite end of the spectrum as we age people experience a range of impairments from hearing and sight loss; to loss of memory, mobility and daily functions.

Either end of the age spectrum isolation barriers due to access is an issue. It may not be one of communication, mobility or intellectual ability, it could be one of social acceptance.  Social acceptance may be a matter of your simply trying to access inappropriate social settings such as a teenager trying to enter a night club underage, or some at ninety may not be so welcomed; and a five year old doesn’t belong at a bowling green.  Social acceptance isn’t solely determined by tolerance of those around us.

Indigenous cultures and tribes are govern by their social structure is a prefect example of who social exception is not always the result of discrimination. I think if people in our society could be more grown-up and honest in the way we discuss issues social isolation and access for all of us as Australians, great grounds towards social inclusion could be made.  Especially if we owner our fears and prejudgouses. We are all human and to deny their reality in my book delays the need for intelligent discussion towards understand and social inclusion.

To own my own humanity and failings in this debate is an illustration of how our language regardless of the topic of conversation can be inclusive rather than exclude key players in the debate.  

So your probable wondering how all this affects the arts.  Well to remain inclusive ‘the arts’ is essentially about creative communication that requires the use of one or more our five senses.  When one of these sense is impaired the person ability to access artworks and performances as its produces intended.

Most notably in terms arts this impairs those with sensory impairments most significantly and to increase Australian ability to access the areas across the board we need to look to technology to bridge the caps.  In terms of the performing arts we are looking at making captioning available in chimera and theaters. As well as audio descriptions of performances and visual for those with impaired visions.

While physical access continues to be a barrier for some Australians as new venues are designed due to government legislation demands all new buildings meet accessibility standards.  What better time to ensure these venues continue to be accessible for all Australians in the future to ensure all building have the capacity to include all Australians in the ability to enjoy the arts in the format in which  it is produce.

The O

Access 4 All

at MONA in Hobart, Tasmania Australia

Interesting when I visited Mona Art Gallery and Museum later in the week the use a electronic advice called the‘O’ which allows patrons to access two or more media for information able the artwork and give personal reviews. This technology gives all Australians better access to the visual arts not just those affected by impairments.

Access should not be about enabling a few Australians to attend art festivals and chimera but all of us accessing every aspect the arts has to offer us as individuals.  By increasing the capacity to reach a greater audience we to will invite a greater diversity of artists to participate in all art forms and their production.

The arts industry has an incredible opportunity to lead the way in making society accessible for all Australians and advocate for social inclusion. It is such be to great of gift for us not to take up the challenge.  In the digital age the access issues look very differently to the previously generations.

I hope that helps you my readers understand what I mean by access for all Australians. As we have an incredible bright future ahead of us.           

See the Child not the Disability

UNICEF seeks to highlight both the needs and the rights of children with disabilities. 

By insuring rights through birth registration Children with disabilities have access to 

education and medical care leading to an increased ability to reach their full potential. 

This results in meaningful inclusion in their communities.

Choices creating possibilities!

Young man with Autism Graduates 

with his Masters!

It's a statement I hear often, It is not our disabilities that limit us, rather attitude and the attitudes of those around us. The change that has urushered in a new system of Disability Care in Australia, is on of the biggest shift in thinking Australia has even gone.  It requires a shift in thinking . . . and shift in attitude.

On July in 5 trail sites around Australia the doors to Disability Care Australia will open for the first time.  For the first time people with disabilities  the families and adult graudin will be given choices about the way the want the support needs to be meet. While Disability Care Australia will see in real injection of funding to meet the unmet needs of 10, 000's  of people living with primate serve disability, it also aims to 'revoluationalised  the way we have historically thought of disability and how we have 'cared' for these people.

Often during these debates I have heard these people refer to as 'the most vulnerable members of our community. Our ingrain first reaction and need to protect these individuals with disabilities is very strong. I living with a disability know first hand their are many people in our society ready to take advantaged of those who are traditionally viewed as having a weakness.  Sadly there is an element in our society that will exploit anyone with any type or weakness and we do not have to have a disability to fall pray to these people.  Our expressions tell powerfully stories of how we view people with disabilities and labeling them as being the most vulnerable people in the community, makes a powerful statement for protection.

However these statements and therefore judgments are made on traditional and historical views of people with disabilities. Historically people with disability and their families were isolated from their community. They were not given opportunities to be educated or seek employment.  No one challenge that their was more that one way people could play tennis and ruby.  People who need to mobilize in wheelchairs and artiphical limbs now compete on an international playing field.  My friends playing powerchair rub is a new normal even for me!

So as we march towards a new era in Disability Care we need as a society openly acknowledge that we need to work together to extend the bounds of "possibilities".  People with intellectual and sensory disabilities are now guarduating from high school and going on to territory education.  People of equal education levels should not been label 'vulnerable' on the bases of diagnoses along. 

Thus the first change we will see under Disability Care Australia is a shift in the way people with disabilities and their families are assessed.  Not longer will we ask what a person can't do, we will ask what the person who like to do or about the 'dreams' parents have for their children.  Even our fundamental assessment tools have contributed to the undervaluing of people with disabilities.  So in order to make these major changes and see a true enrichment in the lives of people with disabilities, their families and those who care for them we need to choose to ask smarter questions.  It a child with Cerebral Palsy has intensive physio is it possible the may be able to walk?  Not can your child walk?  

Hopefully as we shift the way we make our assessments and the way we define what is possible. Our natural insticts to protect to people with disabilities will decline and we will be willing to lossing the  puppet stings enough to give people real choice and real direction over their lives.

As my regular readers know to give people choices means we need to accept that some people with disabilities and some family members will make poor choices resulting in people being harmed in same way people chose to smoke.  To give people real choices means the person making the choice is responsible for the results good or bad.

One I the things that will leader to greater acceptance of choice is to begin now to ask ourselves, is it possible that my son or daughter could live independently in the community if they were given the right support.  It is only after we ask 'what is possible' when can then ask how do we make this possible, what are the right type of supports for 'my child'.  What does my child need help with to get out of bed ans to arrive at TAFE/work or the day centre on time?

To get the right answers, we need to learn how to ask the right questions.  To do this me need time to allow ourselves to explore possibilities that have never been there before. Need possibilities because of better supports, advances in medicine and technology, shifting in attitudes and more access to education and early intervention programs.

The first step we can take in this journey together is today.  Today we can start to change the question we are asking ourselves and service providers.  Today we can begin to ask what it possible given the opportunity to make different choice.  What could our future look like.  So when we reach our turn to switch to Disability Care Australia or be assess we already know the possibilities we want to make real!  Are you ready . . .  ?

Can you see my abilities

(c) Original Artwork by Debbie Chilton 

When people see me rolling down the street the make assumptions.  Don't tell me otherwise because I am guilty over the same thing.  A large of weight (the 'fat' word often followed by lazy comes to my mind.) struggling to walk towards Macer's in the food court . . . only the keep walking and order at subways.  Our eyes make many judgments. But as I have just illustrated, judgments are often incorrect.  Our eyes often see disabilities that registered in 'our mines' and Aline with other memories to form conclusions. Physical disability = intellectual disability, not so true in my case. 

People can see I clearly have disabilities but my true abilities are hidden.  Not many people in the community would assume I was a writer and artist and ever few would twig I have an Art's Degree.  Just making a general observation here that may be correct or incorrect. My piece of artwork above asks, ' can you see my abilities'?

I've not posted about my artwork or progress of leadership goals for a while.  Been so busy working on achieving them.  I have continued to spend one day a week on creating my art however a large portion of my week is spent developing my ArtISability program. 

   ArtISability is a professional development program I am developing for people with disability living in the Ipswich regional. Artist with disabilities have obstacles other artist don't face in a very competitive industry. Such as phsyical access to venues, art space, travel, finding accessible accommodation, access to training and workshop do to intellectual impairments, hearing impairments, visual impairement and reading written materials and all this is before we begin to deal with the assumptions others make about our disabilities.

One of the main focus of artisability is getting the creative space right.  The difficulty in locating accessible accomondation and art space in Ipswich is challegenes, which is something that tells me the huge need I will uncover for the program as physical access it the tip of the iceberg.  How do I move forward to create an accessible market place on graduation from the program. 

I also need an accessible art gallery to exhibit the work.  Then theres' all the everday challenges that every artist has as the begin.  My employment (earning money) vs my passion art work/life balance even as a arts worker this is a challenge, finance, marketing travel and training all need to be juggled in their too.

Training and learning support is the key component of the program, accessing training is differcult enough, without the access issues, learning support need for those who can't read or write or hear.  A spech impairment itself brings access issues.  So the program in focus around providing accessible training with the phsyical and learning support people need in place.  Things like accessing a support worker without having the burden of the cost.  Just trying to level the playing flied. 

As an artist with disability I know the reality of these challenges which is why I am setting up a facebook page to promote my work.  e 

     Doodles & Dribble

People can read about my work, view my work, find out where my work is on display and even purchase my work.  For now I am doing much of my own design work, so lagging a bit on the computer tech stuff but overall I am building some monment.  At present I have some work in the Ipswich show and next month I am off to Tassie for my first art show.  

From previous posts you have read my advocacy work and I still have six months left in the leadership program. . . 

If you can share the link to Doodles and Dribble with your friends and family I be beautiful for the free advertising. Oh an if you know any artists with disability living in Ipswich Queensland please tell them about the ArtISability program.  They can email me for an application form.

Cheers,

Debbie   

Challenging the Meaning of Possibilty

They say a picture paints a thousands words as I struggle to aid you in your understanding of the new Disability Care Australia and who we as a community must begin to challenge what is possible I came across this u-tube clip. What do I mean by access to all areas.  I think in a historical context this pair of highly trained dances would of been denied access to this stage.

Certainly neither of this couple would qualify for assistance under Disability Care Australia.  Nor are they the types of impairments that the system seeks to assist.  The video does however challenge our preconceptions of disability and what is truly possible.  One by one each barrier must be removed as we march towards full inclusion and allow people access to all areas.  Not just a spectators but full participants in the recognition we are all gifted in some way.   

She without arm, he without leg - ballet - Hand in Hand - YouTube: 

The maze towards the introduction of Disability Care Australia is a difficult one, as we train our selves to ask what is possible and how do we get there.  Where are the safety nets in this new system?  How do we give people with disabilities and their families real choices with Access To All Areas while protecting their vulumberity to preparatory that may not want to play the game fairly. 

Tonight as I write this posts their are many questions I can not give you.All I can reassure you of is Wednesday's agreement between the state and federal government means for the first time people with disabilities have access to support and resources to enable them to access all areas of Australian live for the first time in history.

The people will like the two ballet dances can live lifestyles of their choosing, without being governed by geographically boundaries and locations where support services are available.  The workings to a system we calling market driven are not yet as clearly defined as I like.  How can I receive a service in Dably Queensland if that serivce that I need does not exsist?  I do know under the Disability Care legislation service will need to change the way they deliver many of their supports.  To answer these and many other question is going to take some pretty revoluationary thinking just like the corrgraphar of this dance.  

Access All Areas

The ability of people with disabilities to access all area is a the core of the legislation that underpins the introduction of (NDIS) now known as Disability Care Australia.  As I been sharing Disability Care Australia is designed to do much more than bring needed funding reform to the disability care sector.  While care and support are essential elements is the legislation they are not the focus.   

Rather Disability Care Australia aims to ensure the Human Rights of people with disabilities or access to all areas. Historically people with disabilities, their families and careers have been segregated in Australia. This has meant previously the abilities of those with physical, intellectual, behavioural, neurological and psychological impairments have often been overlooked as we have attempted and failed to meet the needs of a growing population.  

As medical discoveries are made, more people survive the initial critical period where the impairment occurs. Thus the historical life expectancy and predicted outcomes on which traditional social funding systems were founded are no longer applicable.

In Australia it is time to take a more mature look at 'disability' and what it is and what it is not. Broadly speaking disability is a lost of impairment resulting in the reduction of a persons ability to function at standard compacity.  Impairment can be physical, intellectual, sensory, behavioural,neurological, psychological or a combination of one or more of these impairments. A person with disabilities lies somewhere on a continuum between total loss of abilities thought to be less than 2 % of the population with disability and those classified as having no impairment or disability.

So as we begun to have mature discussions around the implementation of (NDIS) Disability Care Australia we need to be clear on two accounts:

1. The definition of disability and varying levels of impairment.
2. and how does that or does that not impact an person's abilities 

As we move away from historical models of 'disability' were these two issues were traditionally inter-winded, we must now begin the road to untie the two and learn to define them clearly for each individual we label as living with a disability. For each person the dot point on the continuum of level of impairment and level of ability will be very different.

       

Historical models of funding have only looked at the first of these continuum(s):- level of impairment. Until now the decision to assign support and how much support has been solely based on impairment levels. Using this model administrators would compare the impairments of all types to define a person living with a serve disabilities. That's a bit like comparing a Granny Smith Apple with a Pink Lady.

Luckily for people with disability and those who share their lives the signing of the Disability Care Australia legislation leaves behind the use of comparison models and funding based on impairment,  what a person can not do.  For we now recognize ability for its true value.  Regardless of the particular ability it still an ability. A person's impairment may only allow very limited ability such as eye movement and breathing. Regardless of their perhaps profound impairments we now must recognize all of the abilities of the person being assessed and ask, given the right supports at the right level what is possible.

Is it possible this person can have a life in the community without being accommodated in a nursing home? Can this person with a profound level of impairment have access to all areas and how can that be achieved. As we learn to ask these new questions this revolutionary system is demanding our answers our time will change as too will our definition of level of impairment. 

Certainly the productivity commission in setting the prematures for the NDIS sort to challenge the limitations and the limiting conditions that have historical lead to the exclusion of people with serve to profound n disabilities and their families for community activities including education, employment, sport, leisure, art and cultural, business, housing and politics. Disability Care Australia is very much geared towards giving people with disabilities and their primary career givers access to all areas, based on their abilities rather than level of impairment.

One tool. that enables us to offer more access to more areas than ever before is the role of advances in technology and the way they allow more people with disabilities to independently communicate with others and move independently about our community. It is our attitudes to these rapidly changing abilities and possibles for people that needs to very quickly take a turn around.

The person who only has physical abilities to breath and move their eyes has a spinal cord injury given the right equipment and support from Disability Care Australia it is possible for this individual even with a profound level of disability to live in their own home, move independently in a wheelchair through breathing, enjoy computer access, communicate through communication aids and gain employment.  A person previously requiring nursing home care is able to full access all areas providing we enable those areas to be accessible. 

Unfortunately community attitudes and ignorance of the possibilities that continue to deny people with disability regardless of the level of reduction of impairment true access.  We are still struggling in tradition common ground such as accommodation, education and retail and now Disability Care Australia on July with begin to challenge the area of employment and justice. We have a lot of public education to do before the fully functioning Disability Care System arrives in 2019.     

Let us stop focusing on what people are not able to do so together we can assist each other to see the possibilities and provide the resources for people with disability reach their potential. Let's enjoy the revolution that gives access to all areas.  

                    

Is your house ready for the induction of (NDIS) Disability Care Australia?

Very few of us would by a home without carrying out a building inspections and checking council mud maps.  We all know that small cracks in the ceiling or walls can be a sign of major structural damage we can see.  We also want to know if the property and house has flooded and how high the water was.  Was it as high as the floor boards or as high as the ceiling? When making major investments for our future we want our eyes wide open to all the risks involved in that investment. We definitely want to know the building is built on firm foundation.

  

However no all investment we make in life have four walls, as we have explored in my pervious posts. Boundaries often don’t come in brick and mortar, these types of investments such as the trust of our children in day care, schools and sporting clubs. We want to know our children are safe. Very few of us would chose to fly with airline with a poor safety record. Many of us are not prepare to make investment in plan tickets with airlines with poor safety records.We can stand round cheering and celebrating the introduction of (NDIS) Disability Care Australian or we can begin to prepare our house, for revonnation.  The way we think about disability care and those with disabilities needs to be challenged. Now, not in 2019 is the time to sand down the walls. However before you reach for the undercoat and spend hours studying the colour charts.  How well do you know your walls? Who painted them last time? Was you or the previous owner?

The federal government has just taken ownership of the keys to Disability Care, but forget everything you thought you understood, take our the old scrubbing brush and start scrubbing away the old foundation of the disability support funding.  On July 1 that system is to be declared out dated, even that way we apply for assistance and are assessed in changing. When I was assessed I was asked what I couldn’t do. How well can you walk? How far can you walk? Can you walk to 10 stairs . . . 15 stair . . . How long can you stand.

These types of questions are more about what we or our family member can’t do.  Whether I can walk a 100 meters unaided, is a useless question if my goal is to represent Australia in power chair ruby. If a person’s identify goals are not associated with walking do we need to ask how far they can walk?

A couple has a 2 year old who has just been diagnosed with CP or an intellectual disability, the Pedicatian suggests a visit to the Disability Care Australian office to check for eligibility for an early intervention program. 

I sorry but when your working with a 2 year old and you tick they can’t sit up, stand up. Talk, feed independently nor are they toilet training, I think you could swap the application form between the parents with the child who has CP (with potentially no intellectual impairment) with the form from the child with Down Syndrome and the could look identical.  Assessments based on deficits are floored.

So open you eye are look more closely at the stains, the water marks and the chips and make you’ll be unlucky enough to find a crack.  Or a birth deficit not pick up, like a heart mummer.  Just because you can’t see a cancer doesn’t mean its not there.

That water mark on the bottom left hand corner do you know how it got there or did you just buy the house.  Let’s pause our assessment of wall # 1 there and step back and look at the wall again.  Now in your mind I want you to seal the cracks or replace paster where you need to.  Once the putty is dry apply the first under coat and step back, now tell me how that wall is different.  Has the expectation for the wall change.  Can you visualised what other options or uses you can have for the wall, may be now you thinking or other colours or may be you’re not sure about the repair job, maybe you want a second opinion. 

Maybe those possibilities you imagined for the revenation underestimated what the house can become. People with disabilities are just like the walls of a house, all to offer when we explore the cracks we see things as irreversible or unrepairable. How many times has a child with a disability or person with who had a stroke succeeded all expectations.

In disability care and support its time to ask what might be possible.  Let’s stop putting people with disabilities in boxes and assuming the child with Down Syndrome will not complete year 12.  At the age of 2 let for now put that in the possibilities box.  Aged two it is possible for a children with Down Syndrome to complete year 12.  What about the child with CP is it possible he or she may never walk, but complete a law degree? Yes! Let’s say at age 2 that is possible.

What about are stoke patient, six weeks after the stroke he or she is regaining the ability to talk. Is it possible this patient might be able to regain something of what their life looked like before the stroke,    

Can you see how by changing the question we ask even though the circumstances haven’t changed, the answers, the attitudes and the possibilities have. Welcome friends to the future we’re about to create for people with disabilities and the families.  A future where the disability does not define what is possible.  Rather when begin to ask what might be possible. Might it be possible for my child to be mainstream school if we develop an early intervention program?  Might he or she be capable of full time employment.  Let us start to ask what is possible?

Yes those crack are forming, yes there are potential risks, yes we might need to go back and to re-sand and plugs holes in the walls and make a plan B.  However Disability Care is not about dead ends any more than its about funding models we know failed! 

Let us reach a point when we’re happy with the wall’s and the potential to protect us.  Let’s together make a choice to take a chance and ask what might be possible for people with disabilities and their families.  Lets us be bold enough to ask questions differently as we meet the needs of the valuable members of our community.

What might our community look like in the future?  Just maybe we’ve never asked the right questions before.  I wonder what else we’ll discover as was exploring and secure the appearing cracks?

Do you still think Disability Care Australia is more of the same?

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!

       

My two and a half cents worth on the NDIS

Here’s my two cents on the Reality of NDIS or Disability Care Australia.  The introduction of Disability Care Australia is about eight weeks away form introduction. Regardless of how you feel or view its introduction is about be rolled out. Both sides federal government are on agreement on the introduction of a ‘federal oversight for disability support services. 

Today’s announcement of an increase to the medicare levy has nothing to do with people with disabilities or us the NDIS campaigners, so sorry if I’m a little taken back by the small minority of taxpayers who are venting their dislike to the increase to the medicare levy.  Which for all intentionally purposes is a form of tax, which the labour government has decided will be used to fund Disability Care.

Regardless of how the government choses to balance the books of the upcoming federal government is incorrect to put it at the feet of those of us who have disabilities. We are not the cause of your medicare levy just people who by default may or may not benefit.

May I add that people with disabilities and their carers are also tax payers.  The media commentators are behaving like all people who may benefit for the introduction of Disability Care Australia are unemployable. Don’t worry commentators aren’t the only ones who are month off by misusing facts and figures.  The plenty of people with disability and family carers with mixed view on the introduction of the scheme.  A new government is once again asking us to trust them to get the funding arrangements for ‘our care’; ‘our equipment and medical needs’ and ‘our therapies needs’ right.

To our fellow taxpayers this many be about dollars and cents to you, but for those of us the live with disabilities, our families and carers, this is about who gets us out of bed and feeds us breakfast?  Disability Care is about my right to chose what time I get up in the morning and whether  I want a shower before or after work. These are choices our fellow Australians take from granted. The choice to be assisted to go to the toilet or wear a incontinent pad all day.  Let’s get the fact straight we’re not asking for a trip to sea world once a year, for some of us having the right to most basic choices is what we have campaign for.

A very small percentage of people who will be eligible for support from Disability Care Australia will have very high dependency support needs resulting in 24 hr care.  Yes these people form a portion of the recipients who are unable to work and contribute to the federal governments income.  However regardless of who we are and the hours of week we work we the consumers all pay tax its called GST.

The issues surround the introduction of Disability Care Australia are merkly and I get a lot of needs to be define answers to questions.  We are going into this new arrange based on a knowledge of what we know.  Many people reliant on support services are very sceptical and just expect more of the same with new packaging.  But what is promised to be delivered is a 21^st  century approach to the 21^st  needs and choices of people with disabilities.

The NDIS campaign has been based on the desire of people with disabilities, their families and carers to be included in every aspect of society.  For people the level of inclusion will vary will their individual compasitiy to participate. For a small group of about 6 000 young adults it is the opportunity to choice alternative accommodation to aged care facilities,  for each individual that will look different depending on a number of lifestyle choices. 

This a revolutionary system designed to be driven by the market demands of the individuals who are eligible to use it.  Services will cease to be able to dictate how and when they will meet the ‘perceived needs’ of their clients, hence many are on the back foot and defensive. If clients don’t -want to attend respite care but chose one-to-care to go off to tafe, uni or study from home, providing the individual has the $ to purchase the service must provide it or the client is free to go to the market and use the funding to access a service that allows him to buy one-to-one care.  Likewise if a client wants five days a week centre based  care to meet their high support and social interaction needs at the same time, provided they have they funding they can make that choice.

Funding will no longer be calculated on meeting needs, rather on enabling the person to achieve the goals, which will be driven be lifestyles choice. To image assistance to training and work require huge changes to my thinking. Until now if you could study or work in open employment support was not an option.  Now if some choses to work and support worker can go in at lunch to support them feed them lunch and attend to needs.

A parent  will be able to chose any school for their child.  Rather than be dependent on schools who provided the needed educational support, the government under the ndis most support the families choice as long as them meet the stated goals.  For a child with a hearing impairment that may mean an interrupter for the school day. A hearing impaired child will be able to attend a local school weather they living in Alice Springs or Port Lincoln.

While employment for people with disabilities remains the biggest challenge under the Disability Care Australia, its introduction and market driven client choice could mean creation of new jobs as people with disabilities seek out new opportunities and new possibilities in the way the achieve their lifestyle goals.  Teachers-aid for impaired maybe able to assist with another children in the same class parents could then chose  to pool the resources and purchase other therapies such as early intervention speech theraphy or physio stimulation.

Such a fundamental shift in the way funding is distributed means a huge shift in the way each of us thinks about the support needs.  Is there any wonder why myths, confusion and uncertainty exist. Now I get why we need 5 years, to completely dismantle systems across the states and territories and built an new system based on market place demand and supply mechanisms .  A service can offer any type of service they like, buy it will be the purchase power of the clients with there funding who shape what is viable in the area.

It no service meets their needs or they simply chose not to use a service they can directly employ their staff themselves and that has a lot of people worried.

Eligibility for the scheme is not means tested.  It is base on what is fair and reasonable. Right now much equipment, motor vechial and home modification are means tested or not offered.  If you need a wheelchair get around your house in is unreasonable to expect siblings to carry you or push you in a oversize stroller. Access to mobility aids should be dependent on exposable income or fundraising.  Parent should have to have cake stalls at school gates to buy a child a wheelchair.

 

At the risk of offend my fellow taxpayers independent mobility is a basic human right, a wheelchair is just as essential as clean drinking water.  Yes people can survive without it but they should have not.  All Australians who are eligible under Disability care should be entitle to a mobility device, a guide or assistance dog, car and house modifications regardless of their income.

I my view the NDIS or Disability Care should where possible be on an even playing field for me that’s providing a power wheelchair, some help around home and a worker to help me safely access the community while I am performing one of my many community roles.    Is not about providing care but enabling all Australians the fighting chance to reach that potential. 

Until we squash this nourish of ‘need’ or ‘charity’ in supporting people with disabilities. Until we get that this is not icing on the cake.  Until people understand the NDIS is about an equal right to choice for all Australians. People will continue to struggle to understand what the NDIS aims to achieve. I can’t give you a picture of what NDIS looks like, because for each of us it will look totally different. That’s the trouble there is nothing we can compare it too.

Well my fellow Australian’s that’s more than my two and a half cents worth. So its over to you let me know what you think.

  

   

A Question of Ownership

The term ownership denotes a sense of ‘rights’ to an object of value or artistic creation or intellectual property.  Ownership may imply that something can be brought, borrowed, rented or sold, such as a home.

If we purchase a home this gives us legal rights to the property under council laws. However went a person chooses to rent their home to another person for a transaction of more, the tenant although living in the house, does not have the same rights as the owner who remains the title owner of the property.

Usually, this means, unless otherwise agreed to the tenant can not make structural changes to the dwellings the do not have own.  They are not free to tear up the carpet and polish the floor boards and the certain aren’t entitled to knock out a wall to make a bigger room.

However, a rental agreement does give a tenant some room to make the spare reflect who they are as a person or couple or a family. During the term of the rental agreement it is usual that the house or apartment is decorated with the tenant’s furniture and personal belongings. When they sign the lease, they are free to come and go from the property.  They are able to be absence from the property for a period of time to take a holiday, as long as they pay the rent. In others words the daily life function pretty much like someone who owns their own home.

Except the tenant is legally not entitled to sell or sub rent the house.  Common law prevents the tenant form doing this and protects the ownership legal rights of the title holder of the home.

While I was growing up, my grandparents owner a caravan which for a time they called ‘home’. This is a different type of ‘ownership’ because like a snail then could take their home with them where ever the travelled. While they owned their own home, then didn’t own the land on which they parked the caravan on.  They we free to do whatever they wanted to the own home, they choose to sell it and buy a bigger home, with its own bathroom.  We kids liked that choice because we didn’t have to walk to the toilet block when our family visit and usually trod all over granddads garden.

They could renovate and paint the van any colour they wanted and I remember a few different annexes the owned during the years the rented the tiny little patch of land on which to park the caravan on. So while they owned and could do what they liked with their home, they were also tenants of the caravan park and under their rental agreement there were ‘conditions’ of that rental agreement. 

They couldn’t park their van wherever they liked in the park.  Even how and where the parked their van on the allotment was determined by the lease. Some of the conditions I remember well as they affected me!  Visitors were not allowed to park their cars inside the caravan park and my ‘nan’ and ‘pop’ seemed to live a very long way from the front gate.

The other condition that often seemed to affect us was ‘noise level’ and respecting that unlike my other set of grand parents, my dad’s parents didn’t have a big mulberry tree to climb and swing from like Tarzan nor did the have a backyard that held a full size cricket pitch. Although somehow we still managed to find enough room to play cricket. I remember mum and dad standing guard to catch any stray ‘sixers’ and then you knew you were definitely out and some times needed to sit in the naughty corner.,  Very often the crime was our voices were too loud and were often caught by the owner of the caravan park and asked to leave the swimming pool area. It was either that or for bomb driving. Both were conditions of using the caravan park pool area and well this guy knew who we were. My grandparents had lived their long enough by the time I reached adolesces.

So you see with different types of residences come different laws, bylaws and conditions. The law of common property and council bylaws prevent us from doing whatever we feel doing whenever we like.  Living in the suburbs prevent us from having street parties in the middle of the week until 3 am in the morning.

Of course we do have a choice over whether we wish to consent and obey, the council by-laws and or the terms and conditions of our rental agreements, however if we choose to not be considerate to our neighbours or punch holds in the walls of the house we are renting then we pay the conquences. We either have to pay for the damage we cause or pay the fine as a result of braking common laws, which protects property owners and the other residents around us.

At my last rental property we had a common agreement, like the residents car parking only agreement at the Palm Beach Caravan Park where my grandparents lived. The trouble is common agreements can not be enforce like leases, tenancy rules, by-laws and common law.  The can only be neorgated between the parties involved in the common agreement and the individual tenants become liable for the behaviour of their visitors. When I visitor decides not to comply with the TENANTS CAR PARKING sign as they drive in the front gate then the tenant they are visiting is responsible to as their visitors to move their cars.

Which under the common agreement I had with my fellow tenants at the time on many occasion I should have requested many of friend and family member to move their car. I felt helpless as my visitor chose to take ‘ownership’ over my unit.  Claiming despite my common agreement with my fellow tenants, I had a right to a car park and because I don’t own a car, they had the right to park in ‘my’ car park, which I didn’t even own.

The trouble is even when we don’t have ownership over a property, lease, objective or even intellectual property, we still have this built-in innate feeling of entitlement.  This is claiming the same rights to a property or object as it owner.  ‘Debbie has no car, so I will use her entitlement on her behalf and see there’s no harm done’. 

The trouble comes when feelings of entitlement are not based on fact and unlike titles themselves no ownership rights exist, but under a common agreement we have no power to force anyone to move their car.  It is perfectly legal for a visitor to park in a private residential common car park.  Their choice to do so has not broken any law and we legally can’t have their car towed away, tempting as it was at times.

Inappropriate claims of entitlement or ownership although the may be perfectly legal have conqunences often for the person they are claiming ownership for or even at times ownership of another person.  We have all herd of marriage where the husband assumes ownership of his wife and the wife’s freedom and often her body is abused.

The laws, leases, ownership and common agreements I have been at pains to explain are all examples of boundaries.  Boundaries are the things that keep us safe physical, emotional and financially. 

Just as property owners may chose to keep the houses safe with fences, security doors and alarm systems, rental agreements, by-laws and common laws and even common agreement  are designed to kept residents safe.

There is no use having an emergency evacuation plan for my unit complex if there is no common agreement if not all of the tenants to follow the plan.  If everyone meets at the  meeting point except for Harry, who decides to go to the road front, despite the common agreement, we many assume because Joe heard Harry’s TV going just before the fire started, the Harry is trapped in the burning building.  Just because common agreements are not legally binding doesn’t mean the results of keeping to the agreement aren’t devastating.

For every choice we make has consequences, so too do our personal choices not to respect the common agreements between two or more people.  However not all boundaries are that clearly defined, many personal boundaries remain invisible, unwritten, uncommunicated and only reveal when the boundaries have been cross. And has we have seen when ownership issues are confused and common agreements are challenged or ignored then the probability, that people can be emotionally, physically or financially hurt or abused runs high.

For me the greatest damage to ownership is either a direct challenge to that ownership or someone assuming entitlements that are not owned or belonging to them.  When challenges to ownership and rights of ownership are many, then our natural boundaries for defence are compromised.

Sooner or later one too many planks are stolen from the fence and it leaves our homes as defencless as a tent with out a padlock. Only so many railings and posts can keep our invisible defences together, before we are harmed.

I feel hurt many times when inappropriate ownership is taken many and family, friends and support workers wrongly use entitlements that are mine and mine only.

One of the things that blurs the boundaries of ownership or sense of entitlement is feelings of familiarity. A sense or an illusion that a friend, family member or support worker is in a environment where they feel ‘at home in’!

Let me give you an example of how I imagine this might happen.  During my 10 to 15 year battle with the Queensland Disability Services Department a number of friends helped and assisted with daily living activities, which I struggle with as my mobility and ability to do things decreased. Over the years my wonderful friends and family members have assisted me with transport, cooking means, shopping, moving house, washing, cleaning and much more. In a very real sense I owe my continued independence to these friends and family members if it wasn’t for their love and support, I would never been able to achieve so many of my dreams.

My friends have always been very liberal with their time and resources. As a person with a disability I know how truly bless to enjoy so many quality friendships. In the disable community the gift of friendship is a rare treasure and many support workers are surprised I have friends without disabilities as if I live in a ‘closed community’ to which only they are pilivage to enter.  Again this denotes some type of entitlement on their behalf.

I have one dear friend who has faithfully support me every Monday over the last 10 to 15 years. She has assisted me with anything from a cup of tea on days when I not feeling well, to transporting me to medical appointments, doing my weekly shopping, advocating on my behalf with service providers, basic cleaning and meal prep.

As you can imagine over that length of time, my friend has become very familiar with my increasing needs and home.  My friend knows better than anyone else where things belong or should I say where things should belong.  Many weeks I am thank you my friend putting my kitchen back together, only to have it rearranged by the time she arrives back the next week.  I often joke with her, don’t ask me where the greater is I just live her and obliviously someone has found a more suitable home for it.’

For my friend now in her eighties who grew up in an era where ‘everything had a place, and it should go back in its place immediate after use.’  If you were to visit my home you would get a fair indication of how much I rebel against that rule.

If the washing up is only done once a day and my bed only gets made when the sheets are wash, then these never even rate on my annoyance levels. My battle is the bathroom and making sure the bins are emptied.  You know all those little jobs that need to be done that no one likes to do like cleaning the toilet, sadly at times I resolve myself to doing these tasks.

So the fact that my table cloth in not sitting quite right on the table escape me.  Little does she know it’s only on for 2 days per week.  As you my readers know most of the week the table is covered in art supplies.

In the main it is particular friend is respectful and knows better than anyone else the frustrations I have with having up to eight different support workers invade my home each week, each with their own little twist on how they like to worker and exactly what their job description entails.

So its easily to understand how my friend can have a slip of the tongue and refer to my new set of mugs ‘as her pretty cups’.  I just cringe at the thought of the day I have to tell her, I dropped or knock one of the cups on to the floor and it didn’t bounce.  To my friend I think these cups of mine are prized treasured, almost like her great grandchildren.  I must admit to myself when I discovered them in a small country town gift shop they felt like prized treasures and I too enjoy the warmth as I drink my morning cup of coffee.

While I have a sense of appreciation of my eighty year old friend’s familiarity in my home, this is not so true of my support workers, particularly the ones that have worked with me for under 12 months. The other day I shared with you the example of my worker who enjoys a cup of coffee with me.  While than is not usual and most of my workers take time to chat and catch up on my week over a cup of coffee its her approach that gets underneath my skin.

This worker has become so familiar in my home after a relatively short time, the she walks into my kitchen puts her handbag down and pops the kettle on.  The thought to check it I want a cup of coffee is almost secondary as she commences to take 2 cups down. To me this is a sense of entitlement she has developed when she works in my home.  As if someone who works in an office building might commence their working day by making a cup of coffee.  It’s just a ritual in her day, that she probably hasn’t even given though to home she treats my home and how rude I feel this action is.  Because no I don’t always feel like a cup of coffee or tea when she arrives, one of the neighbours might of just popped down or for some reason I didn’t feel like waiting for her to arrive.

Some of my workers find it difficult that unlike many of their clients my day and the choices I make don’t revolved around their arrival. My life does suddenly start because their arrived to save the day.

I like to amuse myself with the thought if the workers are taking the liberty of claiming entitlements in my home if it would be share to ask them to pay a share of the rent for the rights the seem to have.

My hunch is that they be horrified by such a request, so I guess I’d better stick to paying the household bills