My Updated List of Helpful Disability Resources in Western Australia

This is a revamped and expanded edition of a post I made about 4 months ago. It lists some of the help that’s available in W.A. for autism and disability in general. I hope they are of help to you or someone you know.

1. The first one is applying for the Centrelink Carers Allowance. If eligible your family will receive a fortnightly carers allowance of $114 or a Health Care Card (or both). The Health Care Card also entitles your family to other benefits. Below is the website.

http://www.humanservices.gov.au/customer/services/centrelink/carer-allowance

2. Check out the Disability Services Commission (DSC) website. If you are eligible for services from DSC then you will have access to (and hopefully a home visit from) a Local Area Co-ordinator (LAC). An LAC can direct you to respite services, government grants (such as the Family Living Initiative) and other community based resources including support networks. There are other resources listed on the DSC website that may be useful for you too.

http://www.disability.wa.gov.au/publication/lacsupport.html

3. Taking my child out into the community has been an important part of our lives. Having a Companion Card (CC) means the carer of the child/person with the disability gets in for free (at participating organisations). One day my son and I managed about fifteen minutes at the zoo before we had to leave. I was so grateful I had not paid full adult admission for that visit! The places I use my card include Sci-tech, Caversham Wildlife Park, AQUA, and the movies. Even if you live outside the metro area this card can be useful, as the CC organisation can contact businesses on your behalf to request their involvement in the program. Also it never hurts to ask-sometimes I have asked businesses if they will accept the Card even if they are not officially part of the program and a surprising number have agreed. My best ‘find’ to date is Skywest Airlines who gave me a very nice discount on a regional flight. This card is not just for older children and adults, younger children are also eligible to apply.

http://www.wa.companioncard.asn.au/

4. Another helpful benefit is the rebate available on your Synergy account. This comes via any member of your household having a Centrelink Health Care Card (including your child). You need to ask (maybe even more than once!). The new name for this rebate is the ‘Cost of Living Assistance Payments.’ As Synergy has recently started to cross-check their information with Centrelink, you will need to ensure Centrelink has all of your correct information otherwise you may cease to receive your rebate due to something as minor as a spelling mistake. Check your Synergy bill regularly to ensure the rebate features on your account. For a full list of all available government (and other) concessions in WA see the link below.

http://www.synergy.net.au/at_home/concessions_and_rebates.xhtml

http://www.concessions.wa.gov.au/Pages/SearchResults.aspx?Category=4&termId=93b13e29-54a7-4527-9ae3-0559fe79ad1c

5. If you want to meet people who are on a similar journey to yourself and your family then you could visit the Kalparrin drop in centre at PMH or check out their informative website. Carers WA also offers support and affordable counselling (call 1300 227 377). Another support in W.A. (that is aligned with Kalparrin) is the Facebook group ‘WA Special Families’. Membership to the group is by invitation and by being a parent/carer of a child with special needs. The group has over 1,000 members and means an incredible wealth of knowledge and experience is available to you right at your fingertips.

http://www.kalparrin.org.au/

http://www.carerswa.asn.au/

6. The ‘Raising Children Network’ is an Australia wide parenting website. The two links below may be useful. The autism link also has a comprehensive guide to ‘Autism Therapies’. It includes a brief description of the therapy, if the therapy has been researched, the cost and hours recommended. Therapy Focus also has a website with a lot of useful links. I have included a link from this website that can help families with Special Needs find everything from Libraries to Respite agencies to Legal Centres and everything in between.

https://raisingchildren.net.au/children_with_disabilities/children_with_disability.html

http://raisingchildren.net.au/children_with_autism/children_with_autism_landing.html

http://therapyfocus.org.au/resources/useful-links.aspx

7. Besides websites and word of mouth, another way to find an autism (or other disability) service provider is to call an Autism Association of W.A. Advisor. I believe that they are not meant to tell you who to go to, but they can email you a list of service providers in your area. Sometimes when the list is overwhelming, I choose three providers…give them a call and find which one I ‘click with’ best over the phone.

http://www.autism.org.au/services-we-provide/autism-advisor-program/default.aspx

8. Make sure you access your entitlements through Medicare. It’s not a lot in my opinion but it’s better than nothing. Also what you are entitled to can be confusing and complicated, and it is all a moving target. Having an informed GP, and an informed paediatrician is extremely useful. It helps to be informed and keep up to date yourself. You can also access a number of Medicare resources without an ‘official’ diagnosis.

http://www.health.gov.au/internet/main/publishing.nsf/Content/health-medicare-health_pro-gp-pdf-allied-cnt.htm

9. I have been able to access for my child discounted nappies and a discounted mattress protector through the program below.

http://www.independenceaustralia.com/health-solutions/products-services/continence-aids-assistance-scheme/

10. Kids Sport Grant. If your child has a Health Care Card and are aged between ages 5 to 18 years of age you are eligible for a $200 grant towards sports club costs. This was the easiest grant I have ever received. No paperwork! I just rang my local council, told them the name of the Club I wanted my son to join and they did the rest for me, including contacting the Club and forwarding the funds directly to them. So find a sports club and ring your local council! (If your child is 4 turning 5 it is still worth asking for the Grant-I did and was accepted!).

http://clubsonline.dsr.wa.gov.au/kidsport

Being informed about what my entitlements are and what I need has been the key for me. Then I can ask with confidence. The ‘system’ is somewhat of a maze and can be a frustrating and tiring place to navigate at the best of times…hopefully my suggestions help a little. If there are any other useful resources I may have missed please let me know. I am open to receiving and sharing suggestions!

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Communication: The journey thus far

Imagine this for a moment …a person having words and ideas in their head that they cannot express, and when they try to express themselves other people may not understand what they are saying. As Temple Grandin (an autistic adult) says “when I was 4 I had words in my head that I didn’t know how to get out, so I would just scream.” I can’t begin to imagine how frustrating that would be.

After my son’s diagnosis of ‘classic’ autism a speech assessment was completed for Kiddo at 20 months of age. He had the expressive and receptive communication ability of a 3 to 6 month old. At diagnosis I remember being told by a professional that about 50% of people with autism are non-verbal (probably not the best time to be told this!!). I was in shock. I felt unparalleled levels of desperation and despair in those early days about the very real prospect of maybe never hearing my own child’s voice.

There has barely been a day since that I have not ‘worked’ with my son on communication. So, in point form, this is the journey thus far…and, believe it or not, it did not start with ‘talking’…that was to come much, much later.

  1. Safety. There was no point working on ‘talking’ when my child was not safe. At diagnosis my child was a danger to himself, and had to be taught safety skills through behavioural therapy. We started on an ABA program modified to be appropriate for my son’s young age and it included a Functional Behavioural Plan. ABA also included Discrete Trail Training, Pivotal Response Training, and Applied Verbal Behaviour to address other goals.
  2. Sensory Processing Disorder. Until we were able to get our son’s sensory needs (mainly proprioceptive and vestibular) met in a more adequate manner there was no learning to be had. He could not learn because he could not focus and he could not manage his own body. He could barely stop moving. When your body is not calm every task is difficult.
  3. Routines. Familiarity and security had to be provided to my son through external structures and routines to help order his ‘disordered’ internal world.
  4. Eye contact = Out, Joint Attention =In. The D.I.R training started for all three of us (a therapeutic approach developed by Dr Stanley Greenspan) and we worked on engagement and joint attention daily. (ABA and DIR. No problem.)
  5. Pointing. Distal and Proximal Points. This was part of developing an adequate gestural (and later signing) system. Plus following my (and other peoples) points.
  6. Hanen Parent training. I attended numerous training seminars and courses plus had ongoing coaching from various therapists.
  7. PECS (Picture Exchange Communication System).
  8. Speech therapy using the Millar Method to incorporate my sons need for movement in the learning (see http://www.millarmethod.com).
  9. Visual icons, schedules, and photos
  10. Babbles…jargon…vocal play…word approximations (‘Na’=Nana or Banana)
  11. High Affect. Animated voice and face.
  12. Typical Peer modelling (see previous blog post on Alexa’s PLAYC)
  13. Video Modelling
  14. Receptive, receptive, receptive skills…then more work on receptive skills…It was like a mantra. We don’t want to just THINK he understands-but does he REALLY understand?!!
  15. Generalisation of receptive abilities. Being sure Kiddo could understand in different places, with different people, at different times and with different tones.
  16. Demonstrating communicative intent. Me teaching Kiddo that he had to direct that ‘message’ to an actual person. Kiddo pulling me by the hand was not ok. Use a sign, gesture, glance, picture…whatever…but it must be directed towards me as a person.
  17. Immediate ‘natural’ or ‘praise’ reinforcement for any communicative attempts – a sign, a glance, picking up an object all got reinforced by getting and giving him what he was ‘asking’ for. Much later on we worked on saying ‘No’ to him requesting and teaching him that he cannot always get what he wants … but at this stage we were trying to get him to understand the POWER of COMMUNICATION.
  18. Language Regressions. I said to my hubby one day: ‘I will give you anything (ANYTHING) if you can get that Kiddo of mine to say the word “BALL” again’… hubby really tried on that project!
  19. Behavioural challenges. Sometimes these challenges would become headline news and forced us to prioritise other goals over communication.
  20. Sleep disturbance issues. Again – hard to work on anything when all three members of the family are sleep deprived zombies.
  21. A word, an actual word…in context…and directed as a message to the intended receiver. There were tears from me! The first time my son said ‘shoe’ (which was about his 4th word) it sounded like ‘Shoo’. He was holding his shoes and switching his gaze between the front door and me. I cried. He said a new word. He was 23 months old.
  22. Consistency. Structured teaching. Incidental Teaching. Trying to get him to use the word ‘Shoe’ again…and again…
  23. Prompt Levels and working with a Prompt Hierarchy. Then reducing the prompt levels over time. A therapist once said to me that one spontaneous word is ‘worth’ ten prompted words.
  24. By 2 yrs of age he had 6 words. I still remember them (Na=Banana, Ma=Mama, Dada, More, Car, and Shoe).
  25. By 2.5 yrs he had 50 words (that was the count of all words ever uttered by him…not all used on a consistent basis)…and yes I would write them down ….
  26. By 3.0 yrs it was 70 words. One (sometimes two) word utterances.
  27. By 3.5 yrs he moved to two word combinations (he now had over 400 words in his vocab). Echolalia kicked in too. I used envy parents who had this as an ‘issue’! But it was tricky phase.
  28. 4.0 yrs he moved to three to four word combinations.
  29. My son has just turned 5.0 yrs old. He can talk in short sentences regularly now. He has an abundance of words and concepts in his head. He can comment, protest, request and explain. He has a great little sense of humour. His receptive language is solid for his age. His expressive language is about 1 yr to 1.5 yrs behind his typical peers.
  30. The plan for the next phase is to work on his ability to respond to social questions. To assist him with his use of pronouns and his sentence structure. He also needs help (scaffolding) with using more expressive language in peer play settings.
  31. Ongoing maintenance and acquisition …a new skill has to be practised and generalised to remain, and the new skills have to be introduced and taught explicitly to keep him moving forward.

I was also motivated to document our communication journey in response to treatments and training that advertise ‘fast’ and ‘quick fix’ results (and sometimes with a big price tag). About every 9 months or so my son has a small ‘burst’ of development and moves along with his language. Apart from that it has been day by day, one building block at a time over many years with a team of professionals (and me and hubby) using evidence based strategies and keeping it enjoyable for us and Kiddo. 

News from November

November was ‘one of those months’ for the Brooks family. It was just a lot. Here are the headlines.

My mother in law passed away after a three year battle with cancer. It is terribly sad. She was 66 years old. My son is her only grandchild and my hubby is her only child, who she raised as a single mum. She is already missed by our little family. My hubby’s father passed away earlier this year (also to cancer), so he has lost both his parents in one year.

Brooksy organised a beautiful funeral service for his mum, delivered a moving eulogy, packed up her entire house, and finalised all of her funeral arrangements and personal affairs. He had some very special people around to help out and provide support. It really was no small feat …considering he is on crutches.

Brooksy hurt his ankle a couple of months ago and it just got worse not better. In the end when he went in to see a doctor it turned out he had ruptured tendons and had to go into plaster for six weeks…possibly requiring surgery if plaster does not fix it. To say it has been frustrating for him (and me and Kiddo) would be an understatement. I have to say we both just sighed when the doctor told him to ‘take it easy’ and keep the leg up and rested. I couldn’t resist letting the doctor know that ‘our son has autism – not moving is just not possible!! Seriously! I told hubby he would have to move out of our house and live in a hotel in order to achieve this rest. Thankfully he must like us a lot ‘cos he is still living with us!

November is also birthday month and our beloved son turned 5! It felt like an important milestone. Kiddo had a great birthday and as a present I had a 5 minute professional DVD made of the past five years of his life with a collation of videos and photos arranged with music in the background. Kiddo loved it! He looked amused to see himself as a baby and as a toddler, particularly at clips of himself attempting to communicate through vocal play as a 2.5 year old.

In November the green light was also given by my son’s school for him to enter into the mainstream class full time next year. There will be aide support (not sure yet how much yet) but it is still a pretty incredible achievement by my son. It really is a credit to his determined personality and a credit to all who work with him and love him. He has spent the past two years in an early intervention class which runs on the same campus as the mainstream primary school. Transition across to mainstream started a couple of weeks ago and all seems to be travelling nicely. After a bumpy first half to this school year, the year has now ended on a good note for Kiddo on the educational/progress front.

Then to round out the month I started to feel sick…and nauseous…and tired. I felt crushed by tiredness. And with that I found out that…I am pregnant!!!

So with my hubby threatening to ‘blab all’ on Facebook I dragged myself off the couch today to write this blog. I wanted to do the ‘big reveal’ yesterday but Kate and Wills stole my thunder! So today is my day to make headline news… in my family… and on my blog!

Due date for Baby Brooks is June 2013.

Kiddo 'having a go' with Daddy's crutches

Kiddo ‘having a go’ with Daddy’s crutches