Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012

From: To: Community Affairs, Committee (SEN); Subject: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Wednesday, 23 January 2013 1:10:59 AM

Please consider this email a formal submission by me to the Senate Standing Committee on Community Affairs Inquiry into the National Disability Insurance Scheme Bill 2012.

The current disability system has many problems that need to be addressed.

I find that now I have negotiated the system, it actually is almost working for the first time in 22 years. My concerns about the NDIS, for my daughter, are:

1. She has complex, rare, congenital, life threatening medical conditions. She does not tick boxes and she looks normal. Most doctors have not had a patient with 2 of her 4 conditions. Her medical conditions impact on her every minute of every day but she has become a master at ‘cover-up’ to try to look ‘normal.’ She is very uneven. If she went to an interview with a Centrelink employee it would be impossible for her to communicate those things as she is also very compliant, has trouble with verbal communication and would agree with anything that was said. Our successes have only come after we have sourced Australia’s and America’s leading researchers and specialists and have letters from them explaining the situation to other medical professionals. At present she sees 10 different medical professionals and they are all essential. I don’t know how the NDIS will improve that.

2. She is trying to study for a diploma, at tertiary level, to improve her chances of gaining meaningful employment. She is on a disability support pension but there are no fee concessions for Diploma TAFE courses for pensioners, due to the state TAFE cuts. Her pension is approx $18000 a year and the TAFE fees alone, are approx. $5000. (last year it was $100) The subsidised courses for students with a disability are mainly at Certificate 1 level. This is a very low standard of education and mainly suited to students with intellectual disabilities and covers Work Education courses. I don’t know how the NDIS will improve that.

3. It is a huge disincentive to only be able to earn approx $150 a fortnight before the Carer pension is reduced by 50c in the dollar. This creates a cycle of chronic poverty for a family that already has increased financial burdens through extra medical needs. The Carer pension should never be affected until the total annual family income is at the level of the average wage, or at least close. That way, families with disabled members and carers will be able to live a reasonable life, save for large indispensable household items that have limited lifespans, pursue recreation, mix with society without the stigma of poverty, involve their children in school extra curricular activities, access good medical care and so on. The list is endless. Statistically, most families with disabled children disintegrate and marriages break down. It is usually the mother who is left with the major responsibility for the children. That is distressing under normal circumstances, but almost insurmountable when one (or more) children has a disability. The mother can work and try to provide good care for the children, or become a fulltime Carer and live in poverty with all the accompanying stigma and stresses of being the only parent. If the parent and children are relatively young it is almost impossible to break the cycle or to ever own a home. The cost of renting is often 50-75% of the Centrelink pension.

My Experience as a Carer

I was married with a large house, 100 acres, an inground pool, a husband and family, one and a half professional incomes, friends, support, a community and stability. Overnight I became a fulltime Carer. That’s how it happens. I also became separated, a single mother, displaced, a Centrelink recipient and had to relocate from East Gippsland to Melbourne to access medical services.

In the year prior to that my mother had been severely injured in a motor vehicle accident, my father had died, my son had lost sight in his right eye at the beginning of year 12 and my marriage was breaking down. Add to that my daughter’s frequent dashes to hospital and fortnightly trips to the RCH to access specialist services as well her many and constant daily medical needs and you may begin to imagine my plight.

We then lived in substandard housing in Melbourne where my daughter and I shared a bedroom in a tiny house. In the six years we lived there my son completed a Cert 4 in Music and degrees in Arts and Science at Melbourne University. My daughter struggled her way through 3 secondary schools. We had very little money, resources or support and I am one of the lucky ones! Because I had been employed for a lot of my years until I was 50, I had some superannuation to draw on for legal battles with my ex husband, who did not wish to adequately support his children. That took many years and unimaginable anguish and distress for my children and me.

Because I was a full time carer I was able to put all my energy into battles, and there were many - medical, educational, access to society, legal and more. If I didn’t fight I knew we would go under and join the ranks of the chronic poor. Most people don’t have the support base to do this - particularly those young single mothers with disabled children. It impacts severely on everyone - the mother, the child/ren with a disability and the siblings. How will the NDIS change what is fundamentally a deeper societal problem?

I have heard a lot of discussion about Carers being able to go to work and earn more than the $150 a fortnight. Some parents want to work and that is fine but don’t ever tell us that going to work is RESPITE. That is an oxymoron. Respite is respite: a short period of rest or relief from something difficult or unpleasant. Carers need respite in two ways:

• Sometimes we need respite in the form of a break away from the person we care for. There are many studies and article. explaining why that is essential. It is well recognised and well documented. Work may add to the stress. On the few times that I have taken a few days’ break and gone away and mixed with the ‘rest of the world’ I have found it even harder to return to the situation of Caring. It sort of slaps you in the face.

• Sometimes we need a break from the rest of the world. On a treadmill of medications, doctors, documents, therapies, hurdles, disappointments, grief, illnesses, hospitals, chemists, isolation from normal society, transport issues, educational issues, people’s ignorance and intolerances and frustration, I am sometimes desperate to do something nice, relaxing, ‘normal’ and pleasurable with my daughter rather than without - just like everyone else! I usually can’t afford it and feel guilty doing it. I think it’s important for her too because she has so many unpleasant things in her life that I have to accompany her to. The balance is very lopsided. It must be very discouraging to hear all the worst things that you or your body does, over and over again. That’s what happens every time we have appointments and there have been thousands. It’s very depressing for us both. I have been on anti depressants for 10 years. I can’t sleep without them.

Will the NDIS change any of that for us?

Some people may welcome the opportunity to work, especially if their

‘Caree’ has a recognised disability with good external services.

I chose not to work and I am convinced that was the right decision, in some way, every day. I was often made to feel guilty for not working, from all angles of society. I was amazed at that. I feel that I have been able to access the best medical and educational support possible, by being available to advocate and be involved in her care and participation as well as research information relating to her conditions. I feel that the most success we have had is when the professionals, my daughter and me all work as a team. When we encounter professionals who have alienated me it has not worked and I have kept searching. Because we have a wonderful medical team now, my daughter is achieving things we were told she would never do. She continues to astound her doctors and teachers. There have been some significant milestones and changes in direction over the years. There were some hard won battles, especially with the faceless bureaucracy. If I had not been involved as an advocate and let ‘The System’ make critical decisions there have been turning points that would have had awful, clearly evidenced, inferior outcomes. Based on those times my daughter would now be 150kg, 4“ 11“ tall, sterile, have a year 9 education, housebound and maybe working part time in a meaningless, unskilled job. Instead she is 5“ 6“, 75kg, intact gynaecologically, studying for a Diploma after gaining her VCE, an competent public transport traveller and aiming at pursuing further studies in writing.

The NDIS should not force Carers to work to have sufficient funds to give their whole families a good life with the same opportunities as their peers and should not financially prejudice those who don’t. Caring is a full time job already.

People with disabilities need meaningful work. There are still too many forced into undignified jobs with no benefits or opportunities of social inclusion or enhanced self esteem. e.g. delivering advertising catalogues, unpacking boxes, making beds in motels and collecting supermarket trolleys. While there seems to be some improvement in this area there are still too many people with disabilities in jobs where they are humiliated, teased, bullied and the butt of cruel jokes. They need to have respect in their workplaces and until societal attitudes change dramatically this is very hard to truly achieve. It happens in schools and the workplace. The rest of society needs to be actively educated from an early age. The patronising and intolerance begins in the schoolground and the classroom. We are expecting groups of kids to be tolerant and inclusive to individuals with a disability, when those same kids will cruelly ostracise someone for wearing the wrong brand of shoes or having red hair. My daughter has observed that it’s extremely hard when the disability is unseen and especially when it’s a brain disorder. How will the NDIS address that?

I think that some of the professionals dealing with disability often have absolutely no clues of how it is to live with disability and they are often patronising, bossy and way off the mark. They need to listen to those people with disabilities with the tiny voices, not just the loudest, high functioning ones. They are fabulous too but not for all. I have a close friend who had both legs amputated in his sixties and he rode a pushbike across the Nullarbor and from Darwin to Lakes Entrance. Most double amputees never walk again and many are unseen. We know that this man is the exception, not the rule. We must take time to find the hidden, isolated, unsupported, penurious people with disabilities.

Page 4

The main features of the NDIS that will make a difference to the community are:

• People with a disability can choose the types of support to use,
• More opportunities to participate in the community,
• People with disability/family will influence the types of support and services offered

The most important services for the NDIS to provide are:

• Recreation and community access,
• Support for families and carers,
• Case management, planning and coordination

I support the introduction of the NDIS.

I don’t really know what improvements it will make. The information has been very general and I don’t know if it will address the issues I have.

I would support it if I knew that I could choose appropriate medical professionals, have enough money for a life that is commensurate with average society and not those in chronic poverty and that the rest of society would receive education about disability from a very early age.

I would also like to see a change in the way educational, medical and allied health professionals view family involvement on a long term basis and that they LISTENED to the family and those close to the people with disabilities. There are thousands of stories of frustration and despair from parents who have not been listened to by teachers and doctors. That MUST change.

I want freedom of choice in many more areas and enough money to reflect the job I do as Carer. The successes I have in the early years will improve my child’s chances of not becoming a burden on society and being a productive member of society. That is also more cost effective for the government in the long term. I wish I hadn’t had to fight so many long drawn out battles over the past 22 years. I hope the NDIS will change that.

My 22 year old daughter has exceeded everyone’s expectations and the credit goes to the good medical professionals we have finally found, a few of her teachers and to me but most of all to her. In her supportive environment she has worked harder than anyone I know, just to achieve the basics and beyond. Do you know what though? The better she looks and the more she covers up to be ‘normal’, the more her disabilities are questioned by others. She has complex, rare, life threatening, multiple disabilities.

Thankyou for the opportunity to express my opinions. I hope someone will listen.

I agree for my submission to be made public

Regards,

Ms Maree Kinniburgh Kinniburgh