National Disability Insurance Scheme

Denise Jones

Biggest Issues:

My son Jack with a mental age of 5 has just turned 19. This means that his placement with Northern Beaches Interchange has finished. NBI was the only social event at Jacks disposal where he could meet his friends go on outings in their bus with the carers that he loved. They treated him with respect and kindness and were genuine in their interest of what Jack was doing and saying. Jack responded to this and was always happy to be out with them. He has become obsessed with the tv and computer now that he has no social outings gets cross and surely and not too keen to go about in the community without me.

How my life could be changed by an NDIS:

We could extend Northern Beaches Interchange time frame service and create many more places like them. To keep the continuty of a social community open for Jack to maintain the friends that he gradually and carefully made over so many years. Now all weekends and holidays he is at home with me. The other children have left home. Thats a long time considering he only has funding for a 3 day placement for TTW with a service provider.

Pearl & Richard Jahn

Biggest Issues:

We are profoundly deaf, live in Bicton and have a son Liam who is hearing and 7 years old. He is a part of CODA (Children of Deaf Adults). Liam currently attends Fremantle Language Development Centre (FLDC), Willagee and although he beneifts a lot from this school, he is often lonely as his classmates are not in the same suburb where he lives. We planned to enrol him into the other public / private school for next year but this won't be the case as Liam still needs and will continue requiring speech development program from FLDC. Hence, this makes us sad as we really hope for our son Liam to attend the Palmyra/Bicton school within the Bicton area where the peers of his age can interact with him. If Liam were to attend the Palmyra or Bicton school, we would have to fund the out of pocket cost of private speech pathology lessons. Also, we need to move to the hills to be close to the father's workplace - the big question is which school in the hills that can provide speech pathology lessons as well?

How my life could be changed by an NDIS:

We will be happy if this NDIS can cover the full costs of speech pathology for both the hearing and deaf school children.

michael pittaway

Biggest Issues:

Difficulty getting appropriate employment support. Equipment for people with hearing impairments is very expensive.

How my life could be changed by an NDIS:

Purchasing hearing aids etc. Also, supporting my family while I am looking for a job.

Matt

Biggest Issues:

my brother needs support to have a good future.

How my life could be changed by an NDIS:

I support NDIS because I know if it is followed through my brother will get all the help and support that he needs to do what he wants to do in the future. It will also means that when my parents are no longer around my sister and I will know that he will be alright. from Matt

Alison Reilly

Biggest Issues:

Vunerability and lack of financial aid.

How my life could be changed by an NDIS:

less stress

Mandy Dell

Biggest Issues:

The cost of equipment and medical services Time Absolute disorganisation of the current systems - the only words to describe are its a joke. We live in a remote area and this just seems to make it that much harder for the anyone to be effective.

How my life could be changed by an NDIS:

Less stress We are watching our child die everyday, the stress this type of grief puts on a family is unbelievable but to have to deal with the government departments involved in our lives just tops the stress level right off. I can understand why marriages break down and people suffer depression. It is important for me to work but those days are numbered, with assistance I may be able to continue to work.

Alison Dower

Biggest Issues:

There are too many issue to enter into them individually but have a disability myself, I support people with disabilities and have friends with disabilities and all of the issues come back to a lack of funding. Issues include; Lack of funds to access regular support, Mobility restrictions in support programs from funding, Lack of access to essential services and equipment due to lack of affordability. And these are not all the issues faced by the Disability Sector.

How my life could be changed by an NDIS:

It would be a prevention rather than cure approach to support people with disabilities as opposed to part funding that creates an epic level of stress and pressure for people who are already dealing with so much. It would allow for people to actually just focus on the needs and quality of life for people with disabilities instead of spending that time fighting for insufficient funding. It would also have positive flow on effects to the community economically for example more families could stay in work instead of being full time informal carers.

Nikki

Biggest Issues:

my biggest issue is trying to convince those in power that NDIS is the way forward! come on government - we NEED NDIS its not simply a matter of sitting back and being complacent anymore, each and every one of us could be or currently is affected by disability, a person with a disability is the \worlds largest minority\ come on people its time to pull your finger out and support those who may need it now or in the future to live life in the same way that we all take for granted! The system needs change and it needs it now !! go NDIS!! on a personal note, i know first hand how disability affects people, having a disabled child and also having a \label\ myself, and have been heavily involved in disability areas for a long time both personally and professionally. One of the biggest issues i have found is acceptance and inclusion within society, to sustain this requires not just funds but a complete paradigm shift generally. Education is the key in my opinion, and for that we need money!! (as well as a whole heap of other things too but i may run out of words if i start on that one!!) many thanks

How my life could be changed by an NDIS:

knowing that the support would be there for myself and my family for if the time comes that i can no longer work and support myself or my family. knowing that there will be a system that can support me with equipment and modifications so i dont have to risk losing my home. knowing there will be support available for my carers when they need it most. knowing that my financial situation would not be heavily impacted to the point of near destitition.

Heather Foreman

Biggest Issues:

My husband is 57yrs permanently in a wheelchair due to M.S. 6yrs ago we didn't even know he had M.S. he was always healthy. Then every thing can crashing down, at last he has trialed an electric wheelchair through the Aids and Equipment program but we may have to wait for up to 2years for him to be approved to receive the chair. His job is depending on him receiving this chair but even when it is or if it is approved we will have to find the balance of the cost. I can have someone come and wash my floors, iron the clothes but there is no provision to have someone come and help with the things my husband once took care of mowing, weeding etc. I am told I can't have this service. It took over two years and much complaining to have our bathroom made disability friendly and cost us $3,500 after the Aids and Equipment payment and it is the worst job I have ever seen, I could have cracked the tiles and left holes in the wall for a lot less than it cost. I built the ramp at the front door myself with the help of a friend as the only help I got was a pair of portable ramps that were made for one step and there were two steps I struggled every day to get my husband in and out of the house.

How my life could be changed by an NDIS:

If there was a National Disability Insurance Scheme then maybe we could have purchased the electric wheelchair when he first became wheelchair bound and also had the bathroom done when it was needed rather than having to invent ways of getting him into a raised shower base on a commode chair. Perhaps I could also afford to get help with the outside jobs. Use the money to replace the carpet that is stretched from all the weight of me trying to push a dead weight from the bedroom to the bathroom/toilet in the commode chair. Hospital staff and OT's can't understand why I don't use the portable hoist to get my husband in and out of bed, these hoists are not user friendly in the home.

Gillian van Dijk

Biggest Issues:

As the parents of an 8 year old boy with cerebral palsy, involving visual impairment, some mental impairment, and difficulty with mobility requiring a walking frame or wheelchair, we have found that we have not been informed of various available treatment options because the cost of them is considered to be prohibitive. We were not informed by doctors and therapists early on of the benefits of botox therapy and the possible surgical options, until there was govt. funding provided. This leaves us wondering what else we have not been informed of. We have been given absolutely no help with working out what to feed our son George, and even now he will only eat purees and drink liquids. He refuses anything with lumps in it, because when encouraged to try to take these foods he invariable chokes/gags and becomes frightened. I have a nursing background, and have an awareness of dietary requirements, and have made eggflips, found various supplements and pureed so called whole foods like avocado, but I feel sure that had George been given a nutrition option like isocal from the very early stages, he would have developed with less problems than he has. Apart from the lack of available information, we are also frequently disadvantaged as a family because of lack of access to certain venues. We have two boys who play hockey, but this year we didn't continue with it because the venue is not easily accessible for a wheelchair or walking frame, and we have no family or friends able/willing to look after George while we take two hours or so to go to hockey. We also have another son who was learning the electric guitar, but George can't tolerate the noise of a rock band, so we were always unable to attend concerts as a family. Either my husband or I have to stay home while the other attends each sons activity. As we run a family business, it is very difficult to make normal options available to all our family.

How my life could be changed by an NDIS:

A National Disability Insurance Scheme would create a better informed society. It would ensure that equipment would be available when needed, without having to raise funds or wait in a queue (a name on a list). It would give each disabled person immediate access to assistance, alleviating the burden on the family and allowing them to be more productive members of society. It would encourage organizations already involved in aiding the disabled to be more proactive because they would become more financially viable. We require ramp access to our home, modifications in the bathroom and toilet, and handrails around the place. We lose a considerable amount of income when we have to take George to Hobart or Melbourne for a procedure, because while only one of us goes, the other has to only work during school hours and then be available for the boys. While we receive some assistance from charities and funding, nothing fully compensates, and we all suffer disadvantage as a family.