Monday, April 26, 2010

Squeaky wheel gets the oil.

Back in December 2009 I got fed up with the lack of services etc available to Isla.

I think it would have been around the time I was trying to sort out an aide for her schooling, and trying to be able to pay for the bulk of it myself.

I sent an email to Nicola Roxon, Minister for Health. It's down below if you want to read it {it's the same babble that I've been going on with here though}.

I mention that we can't access DADHC because we have to go through TSC who give us nothing. They've {Dept of Ageing, Disability and Home Care} told me repeatedly that they cannot help us.

So imagine my surprise when I receive an email from a DADHC Intake Officer who says she's been trying to contact me. Yes, an INTAKE officer.

The email I sent to Ms Roxon was forwarded to Jenny Macklin, who I didn't hear from until a week or two ago, and typically, I can't find the letter now *roll eyes*.

It came with a heap of Govt crap, like we're investing $$$ into blah blah blah, which is great, but I don't care. They gave me numbers for free Govt Carers Counselling {which I'm happy to pass on if any others out there want it} a service I never knew existed. They gave me contact details for Respite.

She {or her representative writing to me} forwarded my email and their response to another Minister who this "issue" falls under his portfolio for his "direct consideration and response". They told me to reapply for the Carer's Payment because the criteria have changed since July 2009.

I did initially wonder whether the reply was in response to the National Disability Insurance Scheme that they're working on, or maybe the Aust Govt's Productivity Commission 's inquiry into Disability Care and Support.

Who knows?

Either way, it'll be interesting to see what happens from here.
Dear Ms Roxon,

My name is Allison Farr, and I am the mother of Isla, who is 5 and has Cerebral Palsy. I am writing to your office for your help, in finding the answers to my questions which no one else seems to be able to provide. I am a single mother and a full time student. I have a one year old child as well as Isla.

I applied for funding for Isla from the Dept of Health and Ageing, who denied her, saying that we had to access The Spastic Centre, who would help us out.

The Spastic Centre classify Isla as mild (in comparison to the severe cases they deal with) therefore we don't qualify for their services, except for group therapy, which is of little help to Isla as she is more "advanced" than the others in her group and is often left out of the activities. It is not therapy as such, more like playgroup/social interaction.

We cannot access the local Paediatric Allied Health Unit of our local hospital for Physiotherapy and Occupational Therapy for Isla because we're involved with The Spastic Centre (and we're on waiting lists, we're not actually accessing ANY services from them whatsoever). We're not involved with any form of Early Intervention. I wanted to apply for the DADHC Family Assistance Fund, to pay for Isla to do Riding for the Disabled, but again we don't qualify for it because we're not involved with Early Intervention. We were able to access the PAHU of our local hospital before we moved into a different region, but no one organised our files to be transferred to the new area, no one gave us names of who to see, where to go. Now we've moved back to our old area and are on the wait list to get back in to these services.

We have to pay to see a private physiotherapist, a private orthotist, private specialists (including rehabilitation specialists, neurologists, opthamologists, paediatricians). In addition to these people we see, Isla also has Botox Injections into her legs to help her walk, which is followed by weeks of serial casting, at $250 per week, and Ankle-Foot Orthotics which cost $1400 per year. It costs me $5000 in therapies etc per year. We don't have access to aides for her for things like toileting because her Occupational Therapist said the wait list is too long, and only the more severe cases get approved.

We don't qualify for the Carer's Payment, because Isla is not severe enough, yet she cannot walk further than 50 metres without falling over and being unable to walk further, also when she falls she's unable to help herself back up. Isla is unable to take herself to the toilet. She is unable to dress or undress herself. She has great difficulty brushing her hair and teeth. She is unable to sit on the carpet cross-legged. She is unable to walk in large groups of people as she has very little balance. She has difficulty climbing into her low toddler bed. She cannot cover herself over with a blanket. She cannot climb into the car. She struggles going up a single stair. She cannot stand in the shower, and cannot get herself into the bath. She has difficulty climbing onto our dining chairs to sit with us for dinner. She has toileting accidents almost daily when she has the Botox treatments. She is five years old.

All these things and we're told she's not disabled enough.

She tests well in cognitive skills, which is where we start to have problems - in that, she's not mentally disabled so we have all our attempts at funding denied. I have to lift her for all the above mentioned activities. I cannot take the children shopping, because Isla can't walk far enough, and is too big for a pram, and too big for a trolley. I haven't been offered any form of respite. No form of counselling. Isla's disability is impacting on almost every part of my life, not just hers.

I have to pay for all her therapies and treatments out of my own pocket. My (now separated) husband and I had to hold a private fundraiser to be even able to afford Isla's therapies. I contacted Centrelink about their Carer Adjustment Payment but was told we didn't qualify. We live in a rental property and cannot make adjustments to the house to accommodate Isla, such things as doors on the bath-tub, hand rails in the toilet, shower and to the front door. We cannot put in a ramp to the front door to help Isla get inside.

She will need an Aide at Primary School in 2010 but they aren't sure whether they'll be able to get enough funding for one, so it may well cost me to send her to the local public school by paying privately for an aide.

We're stuck. No one seems to want to help us. We've slipped through the cracks and no one seems to care.

Please help. Please point me in the direction of SOMEONE that can help me.

Allison Farr


Anonymous said...
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Anonymous said...

Ally, I really hope you get a good response from your letter, it was well written and to the point.

Failing that maybe you should offer them to come and spend a day in the life of Isla!

She deserves assistance and all her therapies. I don't see Isla mild at all, yes she may be doing okay cognitvely but what about all those other needs she has motor wise!

I hate to say it (as I do have lots of friends with autistic kids), but I am kinda sick and tired of them complaining about what funding they get and how it's not enough and we all have to fight tooth and nail to even try to get a scrap of funding! Would be nice to get some of the funding they get!

Keep up your advocacy Ally, your doing a great job! Hugs xx

Alison said...

Great letter Ally - I hope it gets Isla the support she needs.

Big brother, Little sister. said...

HI Ally, I am glad you have been linked in with the carer counselling and respite stuff...even if there wait for it. It is these simple things that having a case worker would have linked you in with ages ago. I have an intake worker coming to see Cooper this week we have been on the waitlist for 3 years.....I think I would have had to mention suicide to get them here more quickly.

Ally {mtm} said...

I don't know how parents of children with moderate/severe CP cope. I really, really hope that there are more services available to them than what's available to us.

Bron, that's crazy. Let us know how you get on with them.

I know there's a lot of other conditions that the govt appears to be throwing money at...I wonder if CP will get a shot?

Samantha said...
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Samantha said...

Hey Ally, I wish I could say we do get more, but the services are crap across the board for children with CP. Our (private) OT suggested we try getting funding for PDD (on the Autism Spectrum - $6000 of funding) as C displays autistic traits, but the paed said no because it can be explained by C's brain damage. WTF?? So if he was autistic he would get funding, but because he has CP he can't. Same symptoms + different diagnosis = $0 funding. Awesome. Thanks a lot.

I think I will write my own letter, you have inspired me!

Jacqui said...

Hi Ally,

I'm glad your letter has gotten you somewhere. I hope you keep them up to date on any progress or lack thereof. It sounds like now is the time for you to keep the pressure on.

I have to agree with the others in that I don't think that the lack of services is because Isla's condition is only "mild". Our service provider no longer provides any type of therapy at all. Somewhere along the line, they decided that wasn't their "job" and they are only about "educating" the parents/carers. I couldn't believe my ears when that doozy was said to me.

We too spend a fortune on therapy and equipment. Because Moo can't go to before or after school care, we spend an even bigger fortune on a carer so that we can work and afford to pay for therapy and equipment. What a merry go round.

Keep it up. You are doing a great job advocating for Isla.