Jane and Jessica’s story – Every Australian Counts
Jessica is 12 years old. She was born with the most severe form of cerebral palsy. She uses a wheelchair, cannot speak and needs round the clock care. And on top of everything else this family has to do, her mum Jane spends hours and hours filling out forms for respite care and support.
“I couldn’t cope without respite, but there are still times when it is hard and tough and emotionally draining. There are times when you really need help.
The NDIS could make a huge difference to me time wise, because I find myself time poor because of filling out forms.” Jane
TRANSCRIPT:
A typical day with Jessica is she has to have everything done for her. She cannot do anything herself.
As she’s getting older she likes to do things with Mum. If Mum’s in the kitchen she wants to be in the kitchen with Mum. There’s no just sitting there watching a movie or the TV. That’s not in there anymore. Everything’s to do with mum and being there with her.
There are two different places that she goes for overnight respite; both of those places have their own medical forms that the doctor has to fill out.
If there was just one form I had to get and send out to each different place that would be so much easier.
Today we spent half an hour in the doctors filling out forms when really he should be looking after people that need doctor’s attention. He shouldn’t be a form-filler.
Paperwork! I’m really good at filling out forms now.
It’s just so hard, because you fill one form out now and next week they’ve replaced it or they’ve lost your paperwork. So I tend to have a big filing cabinet of copies of everything that I send out, so if the places you send them out to lose it then you have to do it again. Then you got to go back to the doctor again, – so that’s another two hour round trip.
The NDIS could make a huge difference to me time wise, because I find myself time poor because of filling out forms.
For Jessica it’s just part of her day going to the doctor to get forms filled out.
The things that really annoy me are that the funding is through the same source but it goes to different areas, and all the different areas have different have different forms to fill out, So if the funding comes from one place why not one form? One form for all.
The NDIS could make a huge difference to my life having a tailored programme for Jess, or knowing there is always backup that you don’t need to ring round and cry out I need help, knowing that you could get someone in to help or follow through. Somebody once said if Jessica had a PA that would be really good. In the scheme of things if you look at my diary and she probably does need a PA for appointments or even getting into appointments. There are always waiting lists. Always waiting.
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I fully support the NDIS because it is clear that it would make a huge difference to parents and carers who are already juggling a million things in very difficult and challenging situations. It makes absolute sense that forms and other important information is able to be communicated to the appropriate organisations without the carer having to take on full responsibility.
Fully understand Jane and Jessica’s plight. My wife and I care for our 18 year old son who has NF 1, Epilepsy, severe disability, dystonic/athetoid cerebral palsy. We both work full time and yet care for him at home full time with no assistance which puts huge pressure on families like us. He is now 18 years and this also poses greater chalanges as we need to attend to transition.
Can only hope that NDIS will be established to help us families in some way.
Yes I agree the mother is the realy big saint of this family life story. Help is the need . I always want to know the cause and the how fromthe very start. This is the part that is kept secret, why.
I think you are a champ & keep up the good work. I realize this problem is australia wide.My caring is on a different level to yours but those forms really get me going. No one realizes how much it costs in money & time for the ones we care for. NDIS I believe is the only way to go. We get switched from 1 department to another now Paul is getting older & some of these new organisations have not got a clue. He looks functional but as we know looks do not tell the whole story. Anything I can do to help please email me.
Our story is very similar to Jane and Jessica’s. Our Lachlan is 8 years old, has global developmental delay, impaired vision, retractable epilepsy, chronic lung disease and is also fed solely via a gastrostomy. He is permanently in a wheelchair, cannot speak, does not pick things up to play or use and is totally dependant for every part of his daily life on myself and my husband. I know EXACTLY what Jane goes through with forms etc. It is like the minute you approach a different area of an organisation or a charity, or see a new doctor/specialist etc, your child has been born again and you either need to start from the beginning or you need up-to-date confirmation that your child still suffers the same conditions. Our kids are never going to change unless some miraculous world first genetic cure is found, in fact in a lot of cases they will get progressively worse as they get older. It is not that we don’t have hope – it’s purely being realistic. I worked in full time then part time positions until I had Lachlan – there is very little chance of keeping these jobs because your caring role is full on. I could literally keep going about the role we play for pages and pages but that won’t solve anything. I truely believe there needs to be more consistancy in information sharing and also a realistic understanding of our childrens’ diagnosis’s which might prevent all this duplicating of information. I would also like to see a more individual approach to what each child may need so that they receive equipment etc as soon as it is required – not after some lengthy waiting period (Lachie is waiting on a new larger seating system for his wheelchair and he has been remeasured twice due to waiting for funding – at over $5000 it’s not something we can cover ourselves) . We truely love our Lachie and in feel priviledged to be able to see life through very different eyes – we also want the best for him as WE are HIS voice.
Thanks for your time
Megan King
We, too, are in the same position. My little boy, Luke, is 6 years old and we are desperately in need of bathroom modifications, a hoist and a lift. I am currently carrying him upstairs to his bed numerous times a day and he already weighs 30kg. We have gone ahead and are putting a lift in ourselves with funding donations from church friends and some of our own money. It is over $80K! We applied numerous times and were knocked back. He doesn’t need to go where everyone else goes in the house, apparently! He needed a standing frame at $6K. They no longer fund standing frames as they are an ‘unnecessary item’, although without weight bearing his hips will dislocate and he will require an operation and get osteoporosis down the track. There is so much bureaucratic red tape to navigate it is totally ridiculous, and even when you fill out forms, get reports, meet with staff, they often still knock you back! I only have a couple of hours a day due to the workload of feeding, changing and medicating, putting to sleep, monitoring seizures and homeschooling, it is really tough to find the time to do anything else, yet I have to find the time, as well as raise my other two children. We are essentially begging for help for everything we need just to survive and have to justify every cent, which is fair enough, but as one mum said, these kids are not going to change, but in fact, they will require heavier equipment just to get through the day. Bring on the NDIS and a simpler, more efficient system which sees equipment given to families when they need it.
I fully support the NDIS asap.
As a mother of our 31 year old son with CP, and full time carer ( with minimal but regular respite) I empathize with those who have left comments here. My son doesn’t walk or talk and needs help with everything. Any progress that will help our load in any way is a step in the right direction! A lot more funding in the future for longer respite periods, also, would help us to keep going!
Yes, I get annoyed with those DAMN forms! They never end and they HAVE to be filled in every time……….for some reason. Now just WHO had the disability?? And YES, Imyjen’s condition is genetic- means life long! I love my cherub – she is my special gift- both of my beautiful girls are a special gift. Yes, all the money comes from one bucket but gets dyvied up over many organisations so much so nobody seems to know how it all gets to where it goes to- a lot of it in that black hole called bureaucracy. So much is wasted on handing around and running around. If it was all sooo much simpler- it would make life sooo much easier. Its hard enough trying to care for someone without the added stress of being shoved around. I support the NDIS if it provides streamlined and efficient services. And as I have said many times to any and all policiticians- come and walk a mile in my shoes – spend just a day- my darling is not even “difficult” to work with compared to some- so just spend a day and see how it is for us. I am sure the NDIS would be RUSHED through of all politicians spent one day in our shoes…..
Been there ,done that and yes it is very difficult. My daughter who was profroundly disabled passed away last year at the age of 42. It was 42 years of battling for her . Would like to see that stopped and things made easier for the parents of children with disabilities.
My heart goes out to all parents of disabled children – no mattter how minor or major the disability. Our country is wealthy enough to take in uninvited “guests” from overseas who are treated to all the medical and physical needs they require, yet we have our own people, people who have paid their way, paid taxes etc. who are still asked to waste time filling our forms to receive help we should give them without question. Something should be done about it, and done now, not in ten years time. Joyce Long
Hi my heart goe out to Jane and Jessica, as I know and feel her pain and frustration with Government red tape or either Center Link paper works or doctors paper works. I too had been looking after my little Rett Angel Maegahn Akaruru that was born with her Genetic Disorder that we found out when she was almost 1 year old, that we notice the change she was going through. My wife is a nurse that work in Dylasis Unit that deal with Diabetes and she always leave home very early for work and at the same time I drop my older daughter 22 years old at train station for her to catch her train into the city for her school to finishep up her training as a chef. this leave me at home to deal with my disable daughter for the past 15 years from working up early every morning from 4;00a.m. as that when my daughter wake up because she is wet and need urgent toilet and bathroom wash, and after that dress her up for her school even though she can not walk,use both of her legs, and arms and hands, it make things for her very very hard from morning to night time when she get back from school. the school bus pick her up from home at 7.30a.m. and drop her home about 4.30p.m.. It a 24/7 job my wife get home from work about 3.30p.m. and we as a family has to work around our work,school,hospital and doctors appointment and treatments, and school. I have to do all of those task for the past 15 years. An on the 2nd of May 2011 I lost my job I was sack from work accurse of ” Conflict of Interest”, which I am taking this matter to AFW Commission for “Unfair Dismissal”, this is the second time I was targeted at work since a work incident back in 2008 when I was Union Delegate for my work area ever since I was target right up to my termination on 2nd May 2011. It hurt when you know that you have a disable daughter with a life time illness and I also suffer Diabetes and Mental Depression since my Unfair and Discrimination back in 2008, and your home has been modify to accomodate your sick daughter and the worry about losing your home is very stressful. that my heart goes out to Jane and Jessica as I know the pain of paperworks as I do the same as I deal with my daughter case too. I love my daughter so as my wife and my older daughter, despire the hard yarka we just keep on and enjoyed every day that we have our “Rett Angel” with Us and take it in as a Blessing. Yes I also support the NDIS Team as I would like to join them to help all the family’s with Disable member’s. I work in Local Government for 23 years and I had been a Parking Officer, Local Laws Officer, Ranger, Australian Service Union Delegate, complete Court Procedure & Prosecutors and Advocacy and can help out in area that need work on. I fully support NDIS and being a father,dad, and care for my daughter the job ahead is 24/7 never ending story. To me you got to be doing it to see how hard and demaning the task is, In some case it break up family’s due to the stress and emotion the work is just wear you out day and night. To me no matter how hard the task is we keep on making our daughter life as easy and comfortable that she enjoyed and feel love by all of Us in our house. that our Secrect and Commitment to each other. I use to play golf on week-end but when her situation change I stop playing golf as her life is more important to me. Now that I lost my job I get to do more work at home and had start on some home business at the same time. All I can say is this Keep On The Bloody Good Work NDIS.
Cheers
Ignatius Akaruru.
I have worked with children that have the same disabilities as Jessica and I can completely understand the difficulty’s Jane faces, I take my hat of to her and think she deserves a medal. These families have enough to deal with every day and anything we can do to help should be done ASAP. Let’s get the NDIS show on the road and not waste any more time with paper work.
Jayne, I applaud you and every other parent/guardian coping with a situation like or similar to this. You are all amazing and I believe as a mother of two healthy fit daughters that every family of disabled or handicapped children should receive the help they truly deserve.
Jess keep smiling and Jayne you are amazing xxxxxx
Accolades to Jane,I know how you feel. There are to many rules & regulations in this world to even live.
Yes – one form across all services would be great. Jane has a lot on her plate with Jessica and probably has little time for herself, so less time spent on forms would mean a great deal to her. I hadn’t thought of it that way before – that as parents of a person with a disability we do the job of a PA – a sort of life co-ordinator (often for a lifetime).
Forms are everyones nightmare and I understand J & J’s plight. I can assure you there are even more forms when the child is undiagnosed. I’m a single mother of 8yr and 6yr girls. My 6yr old cannot walk, talk, chew do anything for herself, and has has no formal diagnosis after numerous tests (yes imagine the out of pocket expense due to our very inadequate medical system)! The paperwork is unbelievalbe to get support for wheelchairs, walkers, rda etc etc etc……………………………
Until I saw the communication from Jane regarding her full time role with her daughter Jessica I was unaware of the committment required to simply live and then on occasions get some respite from the role. At the end of the day Jane does get her much needed support to breathe but to have to process so much paperwork each time and on top of that to have to take up a doctors time to process it (as well) then all I can say is that something is rotten in the way the system works. I thought the Government was keen to simplify things but to have to continue with this repetitive process over and over again for the same application is beyond a joke. If the NDIS can resolve this task then get on with it and stop complicating the life of people in desparate need! You should get a medal Jane!
Everybody hates forms and to deal with it continously would be a nightmare!!… Working with people who have a disability I have great respect for all parents and carers, understanding how difficult it is trying to sort out and complete forms for all different services and organisations!!!!!… Sharing info would be a great benifit to everybdoy….. including parents, carers and services…….
Enough is enough, lets hope the powers that be finally listen and take a stand!! As a parent of a child with a disability and someone who works in disability, I see the day to day struggles for families to give our children all that they need. If Jane relinqiushed her role as Jessicas mum,[P.A] how much time,cost and paperwork would the govt have to deal with? Its time for our families to be heard, no longer should our loved ones have to sit and wait, let them have the dignity of care and support without silencing them in a sea of overwhelming confusion!!! The NDIS is a major step in the right direction. Jane as one mum to another …Jessica is blessed to have you as a mum, when you are tired and feeling fragile…know I am holding you in my thoughts…Mandy.
Isn’t it time to get behind our fellow Australians? How long is a string, there is never enough money for families living with disabilities but always enough money to put in bike lanes or for politicians to drive their own political agendas. It is sad that mums like Jane have to spend their time filling out forms, come on lets make it easier for these families and support the NDIS.
Australia has apologised to certain people for the way in which they were treated in the past. As yet we have not apologised to people with disabilities and and their families for the tragic, horrendous way way in which they have been treated and continue to be treated. In the late 70′s Australia took the revolutionary move of closing institutions which in reality meant we closed the bricks and mortar and replaced it with paper. People with disabilities were only included on the Charter of Human Rights in 2008.After thirty years of involvement in the world of disability I have witnessed discrimination at it’s worst, de-humanisation, isolation and exclusion from the community, destruction of families, hearts and souls, death and struggle such that you would see in a third world country. It is time for an apology and a revolutionary move to change this part of our community and our very broken systems where if you scream loud enough or relinquish your child you may receive some assistance from “lotto” pool. I stand firmly behind a system of change that has potential for people with disabilities to be valued, participants of communities and at the very least do not have to wait 9 years for equipment, sleep in wheelchairs because there is no assistance and stand by watching carers and families disintegrate under the struggle with the systems.
NDIS let every Australian Count.