Thursday, April 29, 2010

...why Isla has wobbly legs".

This is how my walk to school went this morning.

I think it's the first time that someone has ever asked me that question. Most of the time I think people wait for me to offer up an explanation.

"She has Cerebral Palsy" I replied.

The mother who asked is Isla's best school-friend's mother, and she is so lovely. I think she was worried about asking me, because she said, "I'm sorry, I mean if it's okay for me to ask?".

I don't know how much information to give. Do I leave it at CP or do I go on about how she got it, where she's affected, what the future holds for her? How much information do people actually want?

I was lucky in that she asked more questions like, "Was she born with it?" and "Do you know why?". All questions I could answer.

I offered up some info on her Orthotics {which we pick up in 2 weeks, yay!} so that they know what they are when Isla starts wearing them again.

I could feel my voice going funny when I was talking about it, you know that wavering feeling just before you burst into tears? But the thing is, I wasn't sad, I was happy. Really happy that she asked me, that she didn't just fob off the kids questions and actually asked and was interested in Isla and her CP.

Isla has started going to Before + After School Care on Fridays while I'm at TAFE, and her little friend goes with her. The mother said she loves Isla so much and always hears about her from her daughter. She said that when she picked her daughter up from ASC she asked the teachers how Isla settled in on her first day there ♥ only to be told that the children there were all falling over each other to be the person to help Isla out ♥

This has been the best thing about starting school for Isla, the way that the other kids want to help her and don't want her to miss out on doing anything. At school, her teacher said the kids race each other to get to Isla's bag to help get her fruit out for munch 'n' sip. They all want to take a turn at sitting on the cushions with her. Kids can be awesome ♥

Monday, April 26, 2010

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

Wednesday, April 21, 2010


So, the Spastic Centre called me today, and asked me if Isla was going to go to the Gym group.

Last year we had an "assessment" with TSC who thought Isla would like their group - which consisted of similarly able children who get together of an afternoon at 3.45pm and do dancing, stretching, games etc.

Sounds great, except that this group is about a 50 minute drive from here, and Isla doesn't finish school until 3pm. I can't imagine how long it would take to get home in peak hour...and I have TAFE too.

I tell them it's not practical for us to get there and we can't make it in time, and I have schooling commitments. She said, "Okay, well if you decide you want to access our service again, you'll need to contact Pathways and wait for the intake".


This is what really shits me about TSC. We're not a priority for them, and I get it, I understand, Isla is mild by their classifications. She is certainly more able than the majority of their patients, but she still has needs...more needs than just a play group.

We're not offered OT or Physio through them. We were offered a speech assessment which Isla "passed" with flying colours. She's never had speech issues {apart from a stuttering problem which went away on it's own accord}. What she needs is Physio and OT, but I can't see a private physio and access TSC. So what choice do I have? Sit around and wait for months for Isla to come up on their lists for review and assessment and not have her seen in the meantime?

I know their resources are stretched. I know they prioritise their services for those who need them most, but we've been dealing with them, and I use the term loosely, since Isla was one. And in that time she's had playgroup a handful of times, where she was either ignored or used as a model, "come on Bob, look at how Isla's knee walking, you do it too!". The therapists didn't spend any time with her...


And I feel guilty for being annoyed with them. I guess they're doing the best they can, but I hate this feeling that my little girl is falling through the cracks in the system, because by their classifications she's mild, yet compared to a "normal" child, she has increased needs. What am I meant to do?

I have a 5 year old, who can't get in or out of a car on her own. Who can't get herself into a bath. Can't stand up in a shower, can't dress herself. Cant brush her hair. Struggles to brush her teeth. Can't cover herself with a blanket. Struggles to walk up the small step into our house. Can't sit with her legs crossed. Can't get up on to a dining chair. Can't walk more than 100ish metres without falling over. Can't stand still without losing balance and falling over. Who can't control her bladder and bowel {still not sure if this is botox or what's going on}. Who still has problems with dribble because she's tightening up around the jaw....Her last assessment showed her gross motor skills to be under a 2 year old level...

I just wish that she was a priority.

Wednesday, April 14, 2010