The NDIS is not optional!

The federal government and Tony Abbot along with all Australians need to understand that the  National Disability Insurance Scheme (NDIS) is not an optional extra for Australia. The NDIS is a revolution this nation needs to begin to address the Human Rights of people living with disabilities and their families.

The scheme in its current format only begins to address some of the Human Rights and years of neglect, people with disabilities and their families have experience. Assistance to have our daily needs meet such as toileting, showering, feeding, transport and equipment needs are not 'optional extras', when they can be afforded. 

Every  human being needs water, food, shelter and love to survive.  The introduction of the NDIS only begins to address these very basic human needs for people with disabilities.  Without support people with disabilities can not get out of bed, go to the toilet or eat.  Some in our community, speak about the scheme as if luxuries were being provided to people with disabilities. Needing someone to change your incontinent aid is not a luxury.

Excuse me for becoming blunt about the daily living needs of those of us have disabilities, but until the community and all members of government fully understands the urgent need to address the Human Rights violations occurring in one of the wealthiest nations in the world, then we have a problem. The UN knows it, the International Community knows it,  The government knows it, and its time the Australian population knows it too.

If I posted a picture of a women in a nursing home bed, who hadn't been changed in 24 hours and was lying in human waste there would be outraged. Outrage for all the wrong reasons. Outrage that I exposed this lady to the public eye, not out rage that it was occurring! 

When we politely discuss the introduction of the National Disability Insurance Scheme, we tend to hold up the champions and it ideals. While the ideals of the scheme are a huge leap forward in securing the some of the Human Rights of people with disabilities, it does nothing to address vicolance against women with disabilities living in nursing homes, fails to empower women with intellectual disabilities to access the justice system, fails to prevent the imprisonment of men with intellectual disabilities unfit to stand trail; fails to protect unborn children with disabilities from termination and continues to fail to address the needs of people with disabilities living in nursing homes under the age of thirty because the cost of the care is too high.

As we debate what the scheme should cost, what it was expected to cost, how to fund the scheme for who and to what degree, we miss the injustices occurring! Like it or not even if the NDIS is fully implemented as designed by the productivity commission only some of these human rights issues are address. 

When I hear we might not be able to be afford, so these are trails the can be stopped. . . I cringe because people have failed to understand, the human rights message that is the Everybody Counts Campaign.

We here much about the costs and the increasing pressure the blow out costs with place on the budgets around the country. We forget that the National Disability Insurance Scheme will only partially be funded  by the increase to our medicare levy and the viability of the NDIS is also dependent on our state leaders. So much about the scheme, its role in improving human rights and funding arrangements is misunderstood. 

For many in our community it s simple change in funding arrangements, but talk to those who are already benefiting from what we were told was a roll out . . . and we realise the scheme dose much more than fund the basic support needs of people living with disabilities. The NDIS hands them the keys to enjoy ever aspect of life as any other member of the Australian society.  It acknowledges  people with disabilities have the same rights and that includes sharing a house and a bed in that house as a couple, whether they a married, defatos or a same sex couple.  Same country then we have the same rights!

It sounds a bit different when we say, Hang on we're married, we want to share the same bed . . . we need a modified bed to do that. Why should the government on fund beds designed for single people living with a disability or only if the were married.  If we're going to call it equality make us equal. If its only tokenism wrapped up as equality, we have a problem  because with what is a luxury and what is not.  

The equality that the National Disability Insurance Scheme can bring and continue to build on.  The opportunities for early intervention, access to better therapies, communication devices, mobility aids, transport. education and employment opportunities are just a beginning on how the scheme will improve the quality of life for Australians living with disability, their families and the community as a whole.   Mr Abbot the NDIS is not optional, so stopping talking like it is!

Australia again we must united until Every Australian Counts!  

What does the introduction of the NDIS mean for you?

 Changing roles under the NDIS

The introduction of the National Disability Insurance  Scheme (NDIS) affects us all. Not just through an increase in the Medicare Levy. The scheme reminds each of us we are only one serious accident away from a permanent disability and need for assistance ourselves.

Imagine if you had a horse riding accident tomorrow and your spinal cord is broken at the bottom of your neck. The good news is you survive and are eligible for assistance under the NDIS, this can be organised while you spend up to the next 12 months in a rehabilitation hospital, as one of the priorities of the funding is early intervention program to get you 'back into life again'.

The bad news is you will never be able to move anything below your lower neck again and you will need to access 24 hour care for the rest of your life. When you go to bed at night someone will need to come in and turn you every few hours so you don't get a pressure sore. You are now dependent on somebody else for everything. You can't even starch you nose. 

More bad news you have a physical disability. You intellectual process, thoughts and feelings are all as there were before.  You are lucky! You can still speak and voice your thoughts and feelings and soon every therapist, doctor and nurse is going to know about it.

Each person that walks or wheels into your room for the next 12 months is going to have the opinions on, 'how you can put your life back together'. You are forced to listen and proceed with your daily therapy. While you are feeling unheard you are also grieving for you loss of mobility and the life you once knew.

It gets worst you are a professional support worker, you know how to help people with disabilities, you know what you want and you can still communicate this clearly, but your wishes are often dismissed. Instead you receive constant reminders you are the patient. . .

Relax . . . this is not your current reality and I hope no one reading this ever experience this reality. Because the funding for NDIS is so individualized the best way to providing training and understanding of how this new system works is to provide examples.  

The priorities for funding under the NDIS are very different to what is currently here in Queensland. Under the National Disability Insurance Scheme, the funding priorities are early intervention, access to therapies, medical aids, mobility aids and technologies; education; employment; accessing public transport and buildings, meaningful community participation, access to the arts and sporting participation.

Despite popular misconception, the introduction of the NDIS is not a change in funding roles between the state and federal governments. Under the NDIS funding is assigned to and individual or family based on the goals and lifestyle choices. Rather than a diagnoses made by a doctor at birth or time of injury.  For the first time a person’s funding package will look at all their needs and how best to enable them to achieve their own lifestyle goals. 

This is not merely a changing of the guard or a change in who is paying the bills. The choices clients and their families will make about their own lives.  A change which will be directly felt by support workers who work one-on-one with clients. For the first time clients and/or their families will be able to chose the service or services they want to access for their support needs.  

These revolutionary changes will be based on the clients lifestyle choices (ie to life independently in their own home near the beach); and their goals and aspiration (eg to play basketball in the Australian Special Olympics team).  Support to attend training and travel to tournaments with be a large feature in this person support package. My recommendation is the person who supports this person will need to be both fit and a early rises.

This fundamental shift to funding being assigned based on individual lifestyle and goals, will see a big shake up in how and when clients are supported and the organisation that is most suitable to support them. 

While support has always been based on a goal, (such as to enable the client to leave the house), all their goals and how they will achieve them is now determined by them and their families or careers. This is their lives, their dreams, their goals and their choices! The NDIS is ALL ABOUT CHOICE.

MY LIFE! MY CHOICE!

SELF-DIRECTED FUNDING  

Regardless our how you view you're client’s ability to make choices, around their lifestyles. As a support worker it is your job to assist your client to achieve their goals. If their goal is to organised a surprise party for their dad's 80th Birthday, but you doubt their ability to achieve and afford the party, as a professional support worker your role is only to enable the client to achieve throwing a successful party.  Whether they then occur a debt, under the rules of the NDIS is their choice and their responsibility. 

Until now in Queensland people with disabilities and their families have had little choice on who will support them, when they will be supported and what they will be support to do.

Currently, the Department of Communities undertakes an assessment and decides the types of support you need e.g. community support, personal care, in-house, respite care and how many hours that will before. They then place you with a service that will provide that support. 

Despite popular beliefs held by support workers a number of factors which currently determine the way you support clients. This includes their diagnoses, the type of disability (e.g. physical disability); whether the disability is progressive; even their post code.  The chances are whether you are on a in-house support shift or a community access shift has not been determined by your boss, but the Departments of Communities. 

It always amuses me when my staff complain they weren't told what we were we're doing on a particular day. As they are always informed Debbie will tell you what she needs when you arrive at her place. The fact that my support plan clearly states my support will be center around my needs at the particular time of the shift (I might wake up vomiting and that will change what I had planned for the day.) I am a real person and real people get sick).  The change with the introduction of the NDIS is that clients no longer need to negotiate with the scope of what 'my needs at the time of the shift' means. 

Self-directed funding means the client choose who will support them, which what activities the will be supported and when they will receive their support. Without a support service being in control of a client's funding, the division of funds will be directed by the client or their guardian. So if a client wishes to be supported at a time when higher penalty rates are paying and receive less hours of support, under the NDIS that is their choice.  

The major priority for funding under the new NDIS is to ensure the human rights of all Australians with a disability and their families are upheld. Just as you have the right to choose things like where you send your children to school and what type of work you do. People living with disability and their families have the same basic rights regardless of the intellectual ability.

Under NDIS even the Adult Guardian Board will be held more accountable to ensure its client have access to choice and the way they are cared for. The NDIS is very much about empower people with disabilities to exercise their right of choice.

It may interest you to know current there are 30 articles on the Human Rights For People with Disabilities. Currently there are hearings occurring in Geneva around Australia's record in upholding the rights of people living with disabilities. As recently as September the Australian Government was using the introduction of the NDIS as its defence and omission that until now it has been in violation of the convention and these articles. The stakes for getting the implementation of the NDIS spot on are very high.

The changes we are about experiences are fundamental and will be felt far beyond the disability sector. These are changes that demand dignity and respect of all people living with disabilities and a goal of social inclusion.  Therefore will be felt:-

• The Public Health System 
• The Public Trust
• Private Therapist
• Education System
• Public and Private Schools
• Transport System
• Equipment Providers
• Public Housing
• Telecommunications 
• Technology Specialist  
• Medical Providers 
• and Support Services Providers of course.  

As the framework for this new model of social reform was being developed under the guidance of the Productivity Commissioner, people with disabilities and their families were very clear the things they wanted the NDIS to achieve the most is social inclusion with meaningful participation in their community.  

They have asked for specific things to be included such as education, employment, an end to underemployment, accessibility to bookshops, libraries, restaurants; recreational activities, sports, sporting venues, gyms, and theaters.

People were very, very specific and very clear on what the visions was for the future. Remember the person in the hospital who was told they would need 24 care, their minds, their thoughts, the feelings, their passions and their dreams are still present. Their vision about a future living with a disability is now taking shape. Their ideas to will be wishes on how they want to be supported will too clearly stated at the right time.    

The person you next support to develop a lifetime support map, could be your husband, your daughter, your grandson or your father. What kind of choices would you want to enable them to make?

Would you be happy for them to go see a movie every day?  Or sit fishing in the summer sun for six hours? If you was the person with the spinal injury and you wanted to stay in bed an hourly longer or have a PJ day; how would you feel if you were made to get up and get dressed? 

With the National Disability Insurance Scheme, trips to the beach, a night at the movies or local pub aren't on any agenda under this reform. The game has changed. Yes, I am sure some clients, who will chose to be continued supported in same way they have always been supported.

The NDIS means We're no longer debating over a clients right to watch an adult movie or get drunk. Our role is now about demanding buildings are accessible. Assisting the client to apply for work or choosing a swimming coach; engaging an advocate so your client can join a choir (as an  intellectual disabilities doesn't affect the voice, just the way you need to teach the person the words.)

If clients are genuinely continuing disappointed with the service receive and/or if the feel their choices are not herd,  NDIS gives them the freedom to go to another service.

I know there are people who like to complain and nothing ever seems good enough for them.  Want to know how I know this? 

Well, I spend about 10 hours every listing to support workers complaining about everything from the husband not putting the wheelie bin out the night before; the neighbours setting traps for the cats because they’re not keeping them in at night; being cheated on by boyfriend; clients not answering the door; shifts either being too short or too long and then of course there’s the weather.

Excuse me - I the one sitting in the wheelchair, I really need to start charging counselors rates, as my degree is in Behavioural Science. For some workers . . . should I chose to complain, I am accused of being hormonal! The fact I have a disability somehow the gives me a hassle free life. Go figure! (For the record that was the week I wrote three grant submissions!) 

If clients are upset for the right reason they will change their provider, just like you won't return to the hairdresser who didn't listen to you. The game has change!

       

     

Exploring Possibilities

Imagine . . .

If you could help change the world, to make society a more inclusive world for people with disabilities. This October you have the opportunity to join others around the world to bring change to those living with disability, through World CP Day 02.10.13

'

A global exchange of ideas to benefit the 17 million people around the world living with CP. In Australia it is estimated Every 18 hours a child is born with Cerebral Palsy or  CP. 

There are a number of identified cause than may lead to cerebral palsy but no known cure's for the five different types of C.P.  The term Cerebral Palsy, is actually a general term for a number of brain disorders. 

It is a physical disability  that primarily affects the skeletal system and  muscles control. However these symptoms are caused by damage to the developing brain. Put into its most simple terms C.P. is the result of brain damage caused in the womb,  birth or firsts months of life;  and it can mirror thy symptoms of acquired brain injury in adults. 

    

How that presents in an individual is dependent on where the damage to the brain occurs and the extent for cell function that is loss.  The above diagram illustrates some of the functions of the brain and how damage in that area may affect the individual. 

Cerebral Palsy may be characterized by the following. 

• tightness of the muscles and/or muscle spasms
• involuntarily movements    
• difficulties with motor skills, effecting the ability to walk, balance, move limbs, hand eye coordination and speech. 
• perception and sensory  difficulties 

Many people living with C.P have secondary disability related to their cerebral palsy. These are often confused by the physical disability itself.  Those with C.P. may experience hearing loss, low vision, epilepsy and intellectual ability, in the same way an acquired brain injury.  The common belief CP and intellectual disabilities go hand in hand is a myths.  The majority of people with  do not have an intellectual disability something the urgently needs correctly, especially in the medical profession. 

  

I sometimes tell people I have an acquired brain injury the happen at birth because the results are the same.  CP can affect one, two or all four limbs.

Living with CP brings many challenges including the barriers that myths create. Each year WORLD CP DAY seeks to address some of these. Through advocacy, invention, technology and the sharing of ideas . 

October is your opportunity to be involved in the sharing and development of these ideas. You can SHARE, READ, VOTE  OR OFFER TO INVENT AND DEVELOP THESE IDEAS by visiting  website.

Tomorrow I have a guess blogger who will share her story and will repost Marlene's story and u-tube clip to raise awareness, you can help raise awareness by sharing this posts with others. 

Debbie   

The road to the introduction of NDIS

I don't assume the transition period between now and the introduction of the NDIS or Disability Care Australia will not be an easier one, as the frustration. confusion and desperation all ready shows.  People are still left unsure on the simple issues, Will I be  eligible?

"If I am 62 not, but Disability Care Australia doesn't commence here in Queensland until 2916.  It not fair that because I live in Queensland I will not be eligible. My needs as a person with a disability don't cease when I turn 65!"

A very valid point, after years of  tears, frustration and either no support services or appropriate services to meet their needs only to find the launch date in their state deems them ineligible. The good news on the introduction and trial sites of Disability Care Australia is on July 1 the starers gun will be fired. For those nearing the age of 65 or born just a few year too early to enjoy the security of NDIS the goods news the these people will be carer for by current aged care funding packages.  Currently their are thousands of young people with disabilities either living in aged care facilities or accessing services intended for older Australians.

As the people join Disability Care Australia and they are moved into more aged appropriate support services, nursing homes beds and funding will be freed up for older Australian with disability such as people who have experience stroke.  I agree more funding will be needed as Australia's population ages.  However for now let us celebrate the improvements the introduction of  Disability Care Australia.

As I talk to parents, cares and families of people with disabilities in their forties, I see a glimmer of hope in their eyes, but I and see and hear despair, pain and frustration. 'We need NDIS now! Not in 5 years time. I don't know if I'll still be here caring for my child in five years, what if I haven't got 5 years?What happens to my son or daughter if I die before then?"

Again valid point of reference. These are real people living real  with real needs.  The people I talk to are exhausted with the frustrations of fighting past and current state governments.  They and the love ones the care for still have to some how survive as they continue to meet the care needs of an adult child.  Remember many of theirs older carers currently receive no government funded support at all and rely on the assistance from other family members, friends and volunteers for a few respite care hours a week. In all the exhaustion this brings to their lives, they are left to care for someone with a significant disability, while trying to access whatever support they can in the meantime.  Added to this they must get the head around a new system of care, underpin by a different level of government based on totally different parameters, and new fundamentals.

To these people you might as well be speaking another language. Concept of social inclusion, community participation, support for open employment, an end to underemployment due to disability and alternative accommodation options are as foreign to them, as people with disabilities living with their families was in the 1920's. It just didn't happen!  All people in the late 60's and 70's who care for their adult children with disabilities is isolation and marginalization for them all their have ever known. To imagine a community in which the NDIS is designed to operated in is beyond comprehension.

I was diagnosed with Cerebral Palsy in 1970 at about 2 year of age.  At a time doors were just being opened to the community.  These were cracks and only a chosen few passed under the cracks to be allow out.  At that time very few people with disabilities were living as part of the community.  Even my parent were ask to consider state care for me.

I was the only child with a disability at my primary school, one of two when I commenced high  school, one of about 20 when I completed high school.  My school had a support unit for the hearing impaired, and the second person with a disability to enroll at the Darling Downs Institute for Advance Education and the only student ever to graduate from University/College of Southern Queensland.

Like most of the parents of my friends with disabilities, my own parents are in their late 60's who are not as articulate or socially. I know all to well the struggles these people have had because I have walked their journey with them and seen their pain. I too have my on tales to tell of my battles with the Department of Disabilities Services Queensland.

Until now guarded mistrust was a means of survival, when you hear these people talk and listen to their stories, you'll understand both their tears of hope and frustration. The journey forward for us will not be easy.

The concept behind the National Disability Insurance Scheme is much much more the a change in funding for early intervention programs, equipment funding and meeting the support needs of people with disabilities. Each of us holds different hopes for a future under the watch of disability care. For many whose support needs have remain unmet, it the dream of being able to shower everyday, for others its respite to be able to simply doing the grosery shopping and have a cuppa of coffee known their child is being care for at home.

However the NDIS is designed to revolutionize the way we 'think about disability', many will find these principles confronting and challenging to embrace.  The induction of Disability Care Australia in the main a human rights issue.

"It is the recognition the people with disabilities, their families and those who care for them have the same rights to choice as every other Australian.  The right to live in a type of accommodation of their choosing, the right to live with people the own age in a appropriate setting, the right to chose which town or city the wish to live in. The freedom to be able to move interstate without the fear of losing the support funding that already have. The right to early intervention programs and therapies to ensure they reach their full potential and become full participants in the communities in which they live. The right to access thing like education, sporting, leisure and culture activities and the right to full employment rather the the underemployment we have experienced for many years."

For too long in this country we have played lip service to the inclusion of all people with disabilities in the community. Young people with disabilities living in aged care facilities is a far cry from the type of social inclusion people with disabilities and the families are now demanding.  Disability Care Australia is about empowering people with disabilities to have self-determination over their own future.

Yes it is hoped in Queensland that about double the number of people currently receiving support will be  able to receive assistance for the first time. However Disability Care Australia will see major changes on how funding is allocated in many regions across the country. The major change is a specific dollar amount will be attached to an individual's name and that funding must be spent on them.  However some will be surprised than their be no money going into personal bank accounts.  All money must be held in 'trust' by a host provider of an individuals choice.  The money must be spent to help the person with a disability achieve there nominated goals registered with Disability Care Australia.

So some of the fears in remote indigenous communities about people having to sharing their funding with their mob are unfounded.  This is not another welfare payment.  The whole system of the new look disability care  system is to fully engage people in their community and that includes for the majority full employment for the first time.

In order to fully implement the purpose change campaign for under the NDIS the federal government and the wider community must introduce reforms to the education system and housing, transport infrastructure in terms of disability access needs to be urgently address and does public access to building particularity in areas with high employment opportunities for people with disabilities.

I think their are pockets in the community the believe the NDIS is merely a funding shift.  A restructure in funding arrangement between the state and federal governments can not alone create the social changes that are needed to bring about the reforms now legislated.

For the under 40's the reforms perhaps hold the greatest potential for future possibilities.  It is in exploring possibilities that maybe achievable under NDIS that we as a community must now grapple with.  We come from a long history in Australia of a culture that undervalues abilities and achievement of those with disabilities. We have failed despite all the erotic to achieve full equality.

We continue to underestimate the potential for people with disabilities.  When I hear comments from my own support workers about the quality of my work and professionalism.  I think, to myself, what do you expect from a professional?  People do not employ project officers who can not operate professionally and I am in a federal government leadership training program.

Sadly some support workers still see their roles as keeping clients company and entertain, which is carry forwards for the days when support was primarily given for respite care purposes. Today support is about supporting people to achieve their nominated goals.  The goal of my support in the eyes of some workers s to have fun.  Only a few understand the full community engagement I am seeking.  I do not want to be taken to a movie or go out to play the pokies.

There is nothing wrong with these activities their just things I do with my family and friends.  I refuse to pay out if my support funds things I can either do with others or  alone.  My support needs in community access are know their someone with me if I have a seizure and carry things I can't.  This transition seems hard for workers to comprehend when traditionally people with disabilities have been isolated from the communities and support staff are the only people in their clients lives.

I have worked hard to crave out a lifestyle of independence and I celebrate the introduction of disability care and the empowerment it will given me to live, work and grow independently for as long as I can.

However the mindset of what people with disabilities should do, who the chose to hang out, how they form relationships and types of activities the will chose will be greatly challenged by the NDIS.  When we see people with mild intellectual disabilities are now undertaking university studies, those who have supported people with disabilities for many years will feel this shift in types of support services the most.

These workers are no different than other members of community and even parent of people with physical, intellectual and behavioural disabilities I currently work with.

People with disabilities want to be with their friends from school why can the remain a community.  

For some this is what the want and enjoy and the introduction of Disability Care Australia should not take this from them.  However, I challenge how this is attitude from support people in young people lives follows a social inclusive society model.  Sure I see my school friends from time to time.  However when I went off to university our lives took different directions. Today my friends are either people I work or attend church with. Unless a person needs full time supervision provided by supported employment and/or day respite centers, the should not be in my view segregated or set apart from the community  Assimilation in to the workforce and community is a natural progression we all experience upon leaving school. It is assistance in making choices around these lifestyle goals that NDIS seeks to promote.

So when I hear statements like these being made by teachers and teacher-aids in "special education" classrooms I shutter.  I wonder whose "choices" we are really discussing. Are we willing to really let going and let individuals make their own choices, like every other member of the community.  To give people the real power of choice me need to let go and accept they will make very different choices to ones we would make for them.  Some may be wrong  and the consequences painful.

 we do not make choice for our other adult children who are leaving school. Some will chose to drink or smoke and some stupidly will drink and drive.  We might like to control or kids more, but we re frame as the find their own way and make their own choices.

Here many tell me I am wrong and my right to choices goes to far. We have a soical duty to   protect those with disabilities.  I continue to strongly voice this opinion  to give people real choices for their lives we must be prepared to wittiness the ban in order to wittiness who some young people with disabilities will shine.

Yes I think the introduction of disability care will challenge many. The road to NDIS is rocky, challenging and scary. But if we chose to be grown-ups and embrace the journey together the destination will be worth it!

What are the possibilities?

As we approach the introduction of Disability Care Australia on my blog at present we are stopping . . . 

Waiting . . . 

And preparing . . .

To ask What is possible? 

. . . If we don't allow our attitude to define our disabilities . . .  

Herr's an example of one teacher who encourage every girl to do her best and encourage her dreams. 

How about you?

What are your dreams and hopes for your son or daughter?

What kind of future under Disability Care Australia do you see for them?

Education?

Sport?

Dance?

The Arts?

Acting?

Employment?

Independent Living?

Relationships?

Marriage? 

Buy their first Car?

In Australia this is the first time that mums and dads of children with serve disabilities will be asked what is it that you want for your child.  For the first time a parent will be asked do you want to give you're child the opportunity to learn to walk?  Would you like to see if your child can cope with mainstream schooling? Would you like a wheelchair adapted to enable your child to play sport?  These are all reasonable and fair request for support to enable a children to fully participate in the community in which they live. 

What is not reasonable or fair is the isolation families have endured as a result of a family member having a life time disability. This is the equality Disability Care Australia (NDIS) seeks to bring into our communities and lifestyles.  The goals of thias system are the goals people with disabilities and their families have told the government the want.  They have said we want to be counted it in!  We want to be included and we want a greater say in the direction we want our lives to take.

Just as this young girl's team mate willed her to shoot a goal, we want to cheer on the people with disabilities in our lives on.  Are you ready to ask what is possible?