What others have said...

Andrea Blight

Biggest Issues:

The biggest issues in our life are financial, meaning who pays for equiptment when needed or services that most additional needs children need. My son is 6 y.o he has cerebral palsey and is also intellectual he was born like this... he can not walk or talk and needs 24 hour care, this is an exhausting job and a little help would be great, in home respite for a night or two is expensive... Every piece of equiptment we have needed has had to be put to the aids and equiptment program which means waiting for approval sometimes months of waiting then waiting for item to be ordered amde and delivered, its july now nd we have been in need of a wheel chair since december last year... This is absolutely not good enough and if this scheme will help families like ours to get the equiptment and help they need for day to day living then i\\\'m all for it... I wouldn\\\'t change my son in any way but seriously we didn\\\'t ask for a child with such high needs and i do think there should be more help out there.

How my life could be changed by an NDIS:

With this scheme in place it seems families would have easier access to funding for equiptment or just day to day needs that a special needs person needs.

Lynn Stills

Biggest Issues:

Early on in our journey with our child with a disability, the struggles we had were finding our way through the minefield of services, products and information. Trying to gain good information and services that suited our needs was a huge task. It was a hard time, mentally and financially, just struggling to cope with the sudden realisation that our child was never going to do things that we took for granted in our lives. Add that to the pain loss and grief you feel when your child is diagnosed with a major disability....it is all too overwhelming. Even now, eight years down the track, i cannot really say that we know much about what the future holds for our daughter. We take each day as it comes, for to look too far ahead only brings stress and fear. My biggest issue is what the future holds for my child, when she is an adult. I wonder if my husband and i will ever get to live our lives. I wonder, what will happen to her when we are gone. I wonder if her siblings will have to bear the burdon of caring for a disabled sister.

How my life could be changed by an NDIS:

Maybe to give some vision of the what if\'s and give some answers to what we can do as far as planning for her future.

Kristin Penhaligon

Biggest Issues:

A) Our family and support network are strongly in favour of a disability reform in the way of a NDIS. Since my sons diagnosis we have struggled to recieve any support from the current system & basically have been placed in the too hard basket. We moved from a regional area to Brisbane with the belief that we would be able to access services that our son needed eg education & health services. My son is now 10 years old. We have fought every step of the way for equality and inclusion but have lost on many occasions. The only support that we have recieved was at Xavier Special Education unit via a positive, conductive & inclusive public education. This was closed due to a negative smear campaign brought about by local members of the community and QLD Education. I and other parents advocated strongly in the best interests of our children to no benefit. Even though the allocation of $5 million was for Xavier's SEDU relocation Education QLD has had their own agenda and did not listen to our concerns of marginalisation. It seems we are taking a big backward step in regards to inclusion in the community. The lack of accessable structured services and a forward approach to advocacy and inclusion is something our family has personally suffered. I strongly believe that a NDIS will provide a well needed reform to the way disability services are currently provided. I also believe under this scheme that the view of inclusion not tolerance will surely benefit all of the community. B) The biggest issue for our family is navigating through the unstructured system to recieve any formal approach to support and funding. Having a top down system & new policies that provides services & funding on an individual and group basis is what the current system in Australia lacking. In other countries the approach to NDIS has had overwhelming success. In 2010 there is no reason Australia can't get with the times and provide this to our most vunerable citizens.

How my life could be changed by an NDIS:

Our lives would be dramatically changed by the NDIS with an ease of access to services based on a fair & structured system of individual funding. Current processes leave our family with little support & access to services caring for our physically & illectually impared son. It's easy to get lost and over looked in the system and miss out on vital services that are needed. The system would also provide a strong reliable form of advocacy Carers & those who don't have a voice.

Stewart MacLennan

Biggest Issues:

Congratulations on all that's being achieved with the NDIS. May it happen and happen soon! Is MS Australia or any of the State MS bodies supporters?

How my life could be changed by an NDIS:

I would need to know more about the parameters in mind for the scheme before commenting. As a Person with MS and a wheelchair user it might have a considerable impact.

Bev Roberts

Biggest Issues:

My son is 32 years old with Cerebal Palsey. Every bit of vital equipment he's ever needed has always been a waiting game. A new elec wheelchair took about 8 mths,the seat has been replaced for the second time(needs to be replaced approx every 2 years). Both times taking 6 mths, that six mths of sitting on a bad seat!!! how bad is that for their comfort. THAT'S JUST THE TIP OF THE ICE BERG!!!!! IT'S NEVER ENDING..

How my life could be changed by an NDIS:

NDIS would make a huge difference to my sons life.No more WAITING..that's what people with disabilities do WAIT!!!!

Shona Fenn

Biggest Issues:

My 26 yo son has severe cerebral palsy and needs 24 hour care which as a single parent I provide. For over twenty years with the help of family I worked night duty to get us a home of our own and using our superannuation we were able to get our own specialised transport. But now with our extended family aging past their ability to help I have had to give up work and take the carers payment which is minimal at best. My son needs care overnight and this limits the respite opportunities we can access, and there are minimal respite facilities in our area anyway (Macedon Ranges). He is in a large wheelchair so transport for service providers is a problem so his social access is restricted. He can't talk but could access a computer using a state of the art eye gaze system that allows the user to just look at a computer screen to use it both for communication and also the usual computer items but this costs $25,000! Where can I get that sort of money? I have tried my very best for 26 years but don't sleep at nights worrying about the fact no more CRU's are being built, the fact that he will be at the mercy of paid carers and there will be no-one to advocate for his rights. Even our current service providers object to the fact he needs one to one care but isn't funded for this so a lot of times he will miss out on activities even at his own Day Centre. I am approaching my sixties and neither of us has had a holiday in years and even then it is never alone. We don't go out much and I have to try and provide as best I can as much as I can for his future needs as well as his current requirements. I KNOW AN INTELLECTUAL DISABILITY IS SERIOUS AS WELL BUT IT IS SO MUCH HARDER WHEN THE PERSON HAS A PHYSICAL DISABILITY BECAUSE OF ALL THE EQUIPMENT THEY NEED, THE TRANSPORT NEEDS, THE LIFTING AND RE-POSITIONING INVOLVED AND THE FACT THAT RESPITE CARE IS SO MUCH HARDER BECAUSE OF THESE ISSUES AND OTHERS. I am tired but never get a rest!

How my life could be changed by an NDIS:

A NDIS would allow us to plan ahead so much more easily. We could have regular physiotherapy, speech therapy and he could access equipment as it is needed instead of having to wait for years sometimes for things like a new wheelchair or orthotics. Hopefully we could access services and equipment without being told there is a ceiling on funds and anything over this ceiling has to be from other sources. This means firstly having to go cap in hand to people begging for money and also it would take away the discrimination caused by being a disabled person of high physical support needs caused through no fault of his own.

Katherine Haggarty

Biggest Issues:

Where my 40 year old son will live when I'm dead or too old/incapacitated to care for him with 7/24 supervision.

How my life could be changed by an NDIS:

By providing a family style home with a caring environment

eil & kev clohesy

Biggest Issues:

access to affordable services RESPITE

How my life could be changed by an NDIS:

quicker access to services at an affordable price

Emma Cooke

Biggest Issues:

Felix was born September 2009, he was diagnosed as Down Syndrome shortly after. After suffering from shock, disbelief, anger and grief we gathered ourselves together to then only find he needed emergency cardiac surgery. Not the beginning we had planned all those months ago when we found out we were having a boy. Since then our life has changed significantly often highlighted with the frustration and anger associated with trying to access services that are stretched to the limit.

How my life could be changed by an NDIS:

Services such as physiotherapy, speech therapy, myopathy, cardiology and when he starts shcool to have the one to one assistance that he is going to require in the classroom. The likely hood that Felix will develop Alzheimers at an early age is high, to think that he will have to enter a home for the aged because there are not the facilities available to support younger persons with care requirements makes me feel frustrated and sad. You can change all of this, please help.

Julie Cocking

Biggest Issues:

My 61 y.o. brother was knocked by a car 50 years ago, and was literally sent home to die. With my parents love and support, plus my father working three jobs to pay for speech therapists, plastic surgeons, and all other medical support plus Queens Counselors, lawyers etc etc my brother gradually started to walk, and talk although still uncoordinated with a speech impediment and an acquired brain injury we thanked our lucky stars he is alive. Through years and years of hard going my mother,father, brother and I moved from Melbourne to peace and quiet of Caloundra. My dad always caring for everyone else was diagnosed with bowel cancer in 1998 I was in my 3rd year of Community Health & Welfare and left considering it was an honor to 'care' for my dad after all he had done for us, sadly he passed on Anzac Day 2000 which was befitting as he was a proud digger. Then there was three of us. Mum was always so over protective of us both, any wonder I suppose, I felt I couldn't leave her to 'cope' on her own to look after my brother so I stayed with her. Then late last year my mother went for Xray and Dr came straight out and said she had 3 months to live, we both nearly fell off our chairs, I was so shocked that a Doctor would be so 'brutal' of course this put mum in a spin worried about my brothers future as she didn't want me 'having to care' for him as he can be very beligerant at times, The day after the doctor's diagnosis mum broke her hip and on 28 March 2010 she sadly passed. Now there are two of us and I am 'caring' for my brother the best way I can but I have chronic oesto-arthritis in legs, back and feet but with use of walker and handrails can get around house and help brother.

How my life could be changed by an NDIS:

With this insurance I feel it would take a heavy load off my shoulders as all I seem to do is stress out and become very depressed. It has been my choice to 'care' for my family members (I receive Carer's Allowance $52 p.w.)but feel I have missed out on things mostly social and financial as no superannuation etc Also its tough when a household appliance i.e. fridge, washing machine or TV breaks one has to get another $500 loan from Centrelink (but that is usually already used for car rego)or wait until July for $600 bonus for Carers Allowance which I appreciate so much without it I don't know what we would do! I don't like to think of the future as I really don't see anything changing for us. I regret Mum and I never got the opportunity or chance to have a break and go on a holiday together, it just seems to be one thing on top of the other and with no other next of kin for assistance or support it gets lonely at times. I would just like to think that the future is a little easier instead of tougher. Thank you for taking your time to read this. M/s Julie Cocking