Committee Secretary
Senate Standing Committee on Community Affairs
PO Box 6100
Parliament House
Canberra ACT 2600
Email: community.affairs.sen@aph.gov.au
Re: Community Affairs Inquiry into the National Disability Insurance Scheme Bill – 2012
I’m the mother of 3 beautiful children and am married to a wonderful man. As a family, we have faced many challenges in life as all 3 of our children have special needs. Our eldest son was born with a medical condition and we were initially told that he would only need a couple of reconstructive surgeries and would live a good life. We also met with a Geneticist and were given the all clear to have more children. After becoming a Mum for the 2nd and 3rd time, our lives changed dramatically when our younger children were diagnosed as being Autistic and intellectually delayed. (I’ve included this information about seeing a Geneticist because people are very judgemental and we’re often asked why we had more children). Of course to add to our stress, our eldest son required a lot more surgery and has currently undergone 38 surgeries and we’re still counting.
Our aim in life is for our children to live a fulfilling life and to be “included” into the community as a whole. We want them and us (my husband and I) to participate in community activities. Sounds simple, but what a challenge it has been over the years. At our worst, we became an isolated family, and at that time, we were also providing care for my parents (my Dad became significantly disabled after suffering a severe stroke and my mothers health deteriorated after becoming Dad’s full time carer). My husband and I did our very best to care for us all and without any support from our family.
All I can offer the Senate Standing Committee is examples of our life experience. I shared a lot more of our very private family life when I appeared in front of the Commissioners during the Productivity Commission’s Inquiry into Disability Care and Support. Like many other Australians, we are supportive and relieved that such a scheme will finally be rolled out for the many Australians who live with a Disability and the loved ones who care and support them.
I definitely support the general principles outlined, to ensure the legislation works to support the independence, inclusion, social and economic participation of people with a disability and recognises their right to exercise choice and control over the planning and delivery of he supports needed.
I would also like to highlight the importance of advocacy. If my husband and I didn’t advocate so strongly on behalf of our children and our family, we wouldn’t have received any support at all.
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I also strongly agree for the NDIS to support Carers and Families. In our particular case, I financially support my family and my husband is our primary Carer. He doesn’t receive a wage, he receives a very basic Carer Payment (in which we had to fight for through the Social Securities Tribunal) and he doesn’t receive any Superannuation. He carers for our beautiful children day and night (unless their at school). Our caring role continues even when we have a support worker in the home. We strongly agree with the flexibility in service provision and to ensure equipment is available when needed. I’ve heard of some absolute horror stories that family’s experience when they ask for help to get their loved one a wheelchair. I also support that participants will be “entitled” to reasonable and necessary supports that will “provide a participant with what is necessary to achieve their goals and aspirations and take part in the community.” Isn’t that what everyone wants and needs in life ?
My main concern / query relates to the following:
- Would the NDIS not be providing support that is currently provided through the health, education, employment, transport and income systems and I highlight Item 29 (1) A person ceases to be a participant in the NDIS launch when: (b) the person is aged at least 65 years and has entered a residential care service, or is being provided with Community Care, on a permanent basis.
When my Dad turned 65, keeping in mind he had been disabled for many years, he became classified as an Aged Pensioner, and didn’t receive or access services that were enough to support him. We (my husband and I) were made to feel extremely grateful that we received some HACC (Home and Community Care) support; however, the actual amount of support he needed to even complete the very basics in life was enormous in comparison. Once again, the care not covered was left to my husband and me to deal with (& this is after my mother had passed away). Eventually we had to move my Dad into an Aged Care facility and although he had his own room and received 3 healthy meals a day, my husband and I still had to provide support to physically transport my Dad to his Hospital appointments and purchase the additional essential items he needed. This was because the Aged Care facility didn’t have any transport options or staff to accompany their clients outside of the facility. On top of all of that, to access the facility – we had to pay an enormous bond, which felt like a ransom to us, as we were at crisis point. Transport is another major issue and although Dad had access to the Taxi Scheme, even a ½ price taxi fare from the Hospital to his Residential Care facility was enormous. Dad regularly attended various appointments at Sir Charles Gairdner Hospital and Fremantle Hospital, yet he lived in Mindarie, which from Fremantle is 60 kms away. For a long period of time, Dad was attending up to 3 appointments every fortnight and because of the enormous costs, my husband and I would transport Dad and accompany him to these necessary appointments (as he still needed physical support to get in and out of vehicles and to go to the toilet etc). Keeping in mind, if my husband was attending to our children’s needs, I would take leave from work to assist my Dad. I therefore believe that covering transport costs and organising suitable options for transport should be covered under the NDIS scheme as well as clients aged over 65 years continue to be supported under this scheme.
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People who live with chronic conditions are not fully covered and supported within the Health system. My husband takes on a very active role to coordinate appointments on the same day and days when our son is unwell, my husband and I jointly provide care for him at home. None of this care is funded. Last year for example, we classed this as a good year for our family as we remained hospital free, which to us means that we weren’t formally admitted to hospital. Our son still attended numerous hospital appointments (bloods, scans, consultant appts etc) each fortnight / month as part of his overall care. He did however still experience numerous kidney infections and this resulted in about 40 days off school. If my husband wasn’t our primary carer providing this extra care and support for our son, this would have impacted on me being able to work and financially support my family and of course how do you hold down a job in this situation. My eldest son’s medical condition is called Bladder Exstrophy and he’s currently 15 years old. If his health continues to deteriorate, will he be eligible to come under the NDIS as he’s not currently registered to receive any services or funding through the Disability Services Commission here in Perth. My husband and I can’t rely on the health system to support him and I’m very worried about what happens in the future if my husband and I are no longer here, as his two siblings won’t be able to offer any support for him both physically, emotionally & financially.
My younger two children attend special education centres and what a fight you have on your hands to receive the “full support” needed in mainstream schools. I know that this system is slightly improving, but I can only describe our experience years ago is like entering the circle of no-where. Once you enter, you go round and round. Lots of time wasting, meetings, more meetings, headaches, more meetings and back around you go. I’m sure this is the reason some family’s end up home schooling their special needs children, because they achieve a lot more on their own rather than rely on the govt services that should be educating our children (& isn’t that – all Australian children ?) Why is it so difficult for your child to attend their local mainstream school if they have special needs ? Why is it so difficult to allocate the “full support” they need ?
In summary, I’m highlighting the fact that other Govt systems, such as health, education etc don’t provide the full assistance required by some people & permanent care in a residential facility doesn’t always provide the “full care” required by some people & this needs to be taken into account when legislating this scheme.
I support the introduction of the National Disability Insurance Scheme & lets get this up and running.
I agree for this submission to be made public.
Regards
Dianne Murphy
15 February 2013
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