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autism

Community & KidsDisability

Autism and Travel Insurance

by bronwyn
written by bronwyn

Recently I have travelled to Indonesia for work and as part of my preparation … and because I like to be prepared I wanted to organise Travel Insurance. This was my first overseas trip for work since my children had been diagnosed with Autism. They weren’t travelling with me … but I guess I had it in the back of my mind when I was organising my travel insurance.

Asian woman wearing a hat and standing in front of a plane

Waiting for the plane

I had thought getting the travel insurance should be pretty simple … I could not believe how wrong I was. What I discovered very quicly that while you might think that there are 1000s of different travel insurance policies out there .. well really that is not true. In fact there are really on a small number of business that offer travel insurance and underwrite for other businesses (that more often than not just copy and paste the PDS from the underwritter). And many of them aren’t really fans of people with Autism … well at least their polices aren’t

How does having a child with Autism that is not travelling impact your ability to get travel insurance?

I know this might seem to be a bit confusing and not make alot of sense … but this is how it works. According to all of the insurance companies I spoke to Autism would be counted as a “Pre-existing Medical Condition”. Pre-existing Medical Conditions of not just the travelling party, but travelling companions and non-travelling relatives need to be considered when getting travel insurance.

Why would that be important? Well if you need to cancel your trip and be repatriated quickly because of something that relates to a Pre-existing Medical Conditions that could be very expensive. That is why you get travel insurance. But how can Autism be seen as a potential cause a claim on travel insurance. Well when I was talking to the insurance companies I got different responses to how they would consider the following.

Scenario – Your child runs out onto the road and gets run over by a car. They are hurt badly and you need to return home.

Response – All insurance companies said that they would pay for repatriation.

Scenario Expanded – I then asked if this could this change if it was known that the child had autism and that one of the aspects of their condition was that they had a fascination with cars and had a general lack of awareness of road safety.

Response – Mixed. Some said that they would pay, some not sure … a few said definitely not.

IMHO travel insurance companies are unfairly (and I wonder if illegally) discriminating against people with non-travelling relatives with Autism. Many don’t or won’t provide coverage for autism and potentially will twist things to extend unreasonably the impact on autism to cover well pretty much anything. This is just wrong.

What do you think?

Image: 99Club

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Community & Kids

School Holiday Ideas – Thomas & the Train Shed

by bronwyn
written by bronwyn

What to do during the school holidays … well if LittleMan had his way I think he would be here everyday. It is his favourite place in Sydney … and probably really anywhere. Where is this wonderful place … it is the Train Shed at Luddenham.

For me this time of the year is perfect for a trip to the train shed. The weather is just perfect … not too hot or too cold and wet. We are probably going to do a few visits over the school holidays.

What can I do at the Train Shed?

Well if your little people love Thomas …they will love it and they can

  • Ride behind Thomas, Toby, James, Mavis, Gordon and Percy
  • Be the Train Driver of the Model Trains on the “Self-Drive” layout
  • Explore and empty your wallet at the toy shop
  • Book tables and BBQ for a nice BYO lunch. Otherwise you can have with a Devonshire Tea or snack from the Kiosk

How much does it costs?

It is free admission for all adults and children. All adults and children 3 years and over must have a ticket each to ride. Children 2 years and under ride free but must be accompanied by a fare-paying adult over 18 years of age. (An extra child 2 years or under needs an extra ticket)

Tickets $6.00 each / 6 tickets for $30. Although I prefer the Unlimited Rides Passes $35 per child for the day.

Group discounts are also available.

When is it Open?

Open 10am-4pm Saturdays and Sundays and every day during NSW Public School Holidays.

Where is it?

Where is it Just 20 minutes from Penrith, Liverpool or Campbelltown At Vicary’s Winery, The Northern Rd, 2km South of Luddenham, NSW (see map below)

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Disability

What are you doing? – Film Distributed to all Australian Schools

by bronwyn
written by bronwyn
What are you doing? Autism Awareness Film Movie Poster

I am very excited that Autism Awareness announced yesterday the distribution of their film “What are you doing?” to over 10 000 schools across Australia. “What are you doing?” is a short film which aims to teach school aged children about acceptance and understanding of their peers with Autism Spectrum Disorder (ASD).

The film addresses some of the fears children may have about ASD, answers their questions and helps show them how they can be a great friend to a classmate on the autism spectrum. The film includes enlightening interviews with the brothers, sisters, cousins and friends of children on the spectrum. These friends and family members share their thoughts and experiences on what it is like to share their life with someone on the spectrum.

Through beautiful imagery, engaging narrative and quirky animation, the film sends a message that children with autism should be accepted, supported and encouraged by their peers to be a part of their community. I have seen it and it is a beautiful, wonderful film that I wish not just school children .. but everyone could see.

All primary, secondary, state and independent schools have received a copy of the film, along with accompanying teaching materials. So contact your local school, let them know how important the film is to your school community and encourage them to show it as widely as possible. More awareness simply means children on the spectrum will be better understood …

Please help spread the word. The path to a better world for all people with ASD starts with greater community understanding and awareness.

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Disability

What Good is Freedom of Speech without the Ability to Speak – Communication Bill of Rights

by bronwyn
written by bronwyn
Hand using iPad

Last night after I got my daughter out of the bath ans she started to cry. She had only minutes before had been really happy, splashing and kicking around in the bath but it was time for her brother to have a bath and as they both hate to share the bath it was her turn to get out and get dressed. My first thoughts were that she just did want to get out of the bath but as the minutes pasted it proved to be something more. The thing is that as she when she gets upset she loses the few words that she has. She just gets very cranky and you know she wants something but just can’t express it. She then gets more upset because she can’t communicate what she wants. It then progresses with me dressing her and trying to work out what she wants (and if it is appropriate at that time and place). This is something that is just part of our daily lives and is core to our reality … but it still makes me sad.

Living with 2 children that can not communicate verbally has taught me alot. I love to talk … and as the expression goes could talk under water. The ability to communicate is so central to my identity that I find it hard to think about a situation where I could not communicate. One of the hardest aspects of their autism … for me at least … is that I am unable to talk to them. Ever since they were both born I have been desperately wanting to talk to them. But this is something that has never really happened. And it is a source of frustrations for both them and for me.

Last year I was introduced by my children’s Speech Therapist to the Communication Bill of Rights.   It is something that I now believe in very strongly. The ability to communicate and express our needs, wants, opinions, thoughts, feelings, and experiences are core to what makes us human and I think it a basic fundamental human right. Core to the notion of freedom of speech is the ability to express and communicate. What point is there to have the ability to say what you want .. if you don’t have the ability to say it. More needs to be done to support and fund therapy for non-verbal people to enable them to be able to enjoy this most basic of human rights …

Communication Bill of Rights

All people have the following specific communication rights in their daily interactions. These rights are summarized from the Communication Bill of Rights put forth in 1992 by the National Joint Committee for the Communication Needs of Persons with Severe Disabilities.

Each person has the right to

  • request desired objects, actions, events and people
  • refuse undesired objects, actions, or events
  • express personal preferences and feelings
  • be offered choices and alternatives
  • reject offered choices
  • request and receive another person’s attention and interaction
  • ask for and receive information about changes in routine and environment
  • receive intervention to improve communication skills
  • receive a response to any communication, whether or not the responder can fulfill the request
  • have access to AAC (augmentative and alternative communication) and other AT (assistive technology) services and devices at all times
  • have AAC and other AT devices that function properly at all times
  • be in environments that promote one’s communication as a full partner with other people, including peers
  • be spoken to with respect and courtesy
  • be spoken to directly and not be spoken for or talked about in the third person while present
  • have clear, meaningful and culturally and linguistically appropriate communications

From the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for meeting the communication needs of persons with severe disabilities. Asha, 34(Suppl. 7), 2–3.

Please join me in supporting the Communication Bill of Rights!!!!

Photo by Towfiqu barbhuiya on Unsplash

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Disability

Which country expects a child to wait more than 2 years for a wheelchair?

by bronwyn
written by bronwyn
Wheelchair on a blank background


Answer: Australia – And we still call ourselves the ‘lucky country’. Yes lucky if you are not touched by disbaility. Otherwise you are regulated by government, the health services industry and health insurance as second class citizens.

The National Disability Insurance Scheme will change all of this and provide people with a disability with the equipment, therapy and support they need. It will revolutionise the way people with a disability, their families and carers are supported in Australia.  The NDIS will be a modern, person-centred support system, helping hundreds of thousands of Australians with disability and their families to have the opportunity to participate actively in their communities by providing targeted supports aligned to need.

The NDIS was devised and recommended by the Productivity Commission in July 2011, following an intensive 18-month investigation of the unmet needs of people with disability and their families and carers across Australia, and analysis of high-functioning disability support systems overseas.

But to Make the NDIS Real for every Australian, your support counts. Please get involved … How??

 
 
 
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DisabilityPlay & Rest

Get Your Motors Running – Autism Motorcyle Ride

by bronwyn
written by bronwyn

Riders of Motorbikes, Scooters, Vespas … and just anything on 2 wheels with an engine … come one, come all for the premiere Autism Motorcycle Event of the Year!!

Event details
Sunday 22 April 2012
The Rocks, Sydney to the Shire
Meet at Hickson Road, The Rocks at 9:30am
The ride will finish up at 11am at Cooper St Reserve, Engadine with a Family BBQ / Picnic open to everyone!
Great prizes to be won on the day!

For more information on the event please contact Michael Hart on 0419 236 252 orAndrea Hart on 0407 074 771.

 

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Disability

UN chief calls for greater investment to help countries address autism

by bronwyn
written by bronwyn

The annual observance of World Autism Awareness Day should spur global action to combat the “unacceptable” discrimination, abuse and isolation that people with the disorder and their loved ones face, according to Secretary-General Ban Ki-moon.

“Autism is not limited to a single region or a country; it is a worldwide challenge that requires global action,” states Mr. Ban’s message for the Day, observed annually on 2 April. “People with autism are equal citizens who should enjoy all human rights and fundamental freedoms.”

In his message, Mr. Ban notes that although developmental disabilities such as autism begin in childhood, they persist throughout a person’s life.

“Our work with and for people with autism should not be limited to early identification and treatment; it should include therapies, educational plans and other steps that lead us towards sustained, lifelong engagement,” he states. “Reaching out to people with autism spectrum disorders requires global political commitment and better international cooperation, especially in sharing good practices.”

He stresses the need for greater investments in the social, education and labour sectors, since developed and developing countries alike still need to improve their capacities to address the unique needs of people with autism and cultivate their talents.

“We also need to promote further research, train non-specialized care providers, and enable the autism community to more easily navigate care systems to obtain services that can support and mainstream individuals with autism,” the Secretary-General says in his message.

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Disability

Getting An Assessment 2012 – Autism and Developmental Delay Diagnosis

by bronwyn
written by bronwyn
Little girl with balloon

Here is my second instalment of posts my series of posts on Autism that I have been working on  leading up to World Autism Awareness Day and Autism Awareness Month in April. For this post I want to cover Assessment. I have written on this before … but after speaking with more people I have got some updated information … So I hope that this will be useful.

Time for an Assessment

I know after you first here the words Autism or the Development Delay are days that events that you will not forget for the rest of your life. Many feel like it is a hit to the gut … and one that it is just impossible to get your breath again … don’t worry you will. But what you need to do is work on getting an assessment ASAP. This is the key to getting, if required, access to funding, access to services and treatment.

The reason for why you should get started on this ASAP is

  • for government services they have waiting lists for everything. You have to wait to get diagnosed and then wait for access to services and treatment. The sooner you get on the lists the sooner you get diagnosed and then if appropriate access to treatment services.
  • some funding expires when your child reaches certain ages. The Federal Government’s specific program for funding early intervention unfortunately is one of these. You will often hear this being referred to as FaHCSIA. More information below


Organising Assessment

Step 1 – Referral

Most assessment centres require a referral from a Paediatrician. This includes the Children’s Hospital and Private Centres. I have found from our experience that if you get a referral from to the Children’s Hospital that private centres will also accept the same referral.

Step 2 – Organising Assessment – Children’s Hospital at Westmead – Disability Specialist Unit 

The Children’s Hospital only does assessments where the child is suspected of having a developmental delay. If this is the case … I would recommend that even if you look at going down the path of getting a private assessment I think that it is worthwhile getting an assessment done through the Children’s Hospital Westmead – Disability Specialist Unit. We found that they are knowledgeable and caring … and used different tests to the private assessment centre (Griffith’s Developmental Scale) and they have connections to the Department of Human Services, Ageing, Disability and Home Care that appear to be helpful rather than you having to fight that bureaucracy to find the right person.

What you need to do is call the Children’s Hospital and speak to someone in the Disability Services Unit. They will be able to tell you the nearest centre to your home. Once you speak with them and and give them a copy of your referral they will tell you whether they may be able to offer an assessment.  If you are offered an assessment they will send you a long a very long questionnaire (20+ pages) that will ask you heaps of questions about their development. While it is a bit of a slog to get through, send it back ideally in a express post pack and keep the reference number. This way you can track and even have proof of delivery from the Australia Post website (http://www.auspost.com.au/track/).

Once you have submitted it you will be put on a waiting list for a date. You should receive the date within 6-8 weeks before your date. You will not be told this unless you ask and you will not be notified on the progress of your request unless they call with a date or if you call. They will call when you have a date and send out some paperwork before hand to help prepare you for what is going to happen. You will also get a call from a Case Worker before the date.

To give you an idea about our experiences and timelines.

  • LittleMan 2010 – I had submitted our paperwork on 25th November 2009 and I had confirmation that they had received it on that date. When I called up in January 2010 I was told that he was on the waiting list for a date (~6 months) and it would be at best sometime in May. We ended up being lucky that someone cancelled and we saw them in February.
  • AnotherChild 2012 – Paperwork submitted on 5th March 2012. Appointment for the 17th March (due to a cancellation)
It all just depends on what they have on their schedule. It might be 6 months … and it might only be a few weeks. They do their best with the resources that they have at hand.

Step 3 – Private Assessment

Depending on how old your child is Private assessment may be required due to their age. If your child is almost 6th … you want to get onto it ASAP and get a private assessment (that can sometimes be organised within a few weeks). I would recomend that you want a assessment completed t least 1 month before their 6th birthday to ensure access to FaHCSIA funding. There  many private assessment options available but I have only experience with Lizard and Autism Spectrum Australia (ASPECT) . Both of these services cost about $1000. However Medicare and private health fund rebates are available.

  • LittleMan 2010 – We used the Lizard Centre at Chatswood and found them to be very professional and we were able to get in for an assessment in only 3 weeks. They used 2 assessment tools – ADOS and ADI-R.
  • AnotherChild 2012 – Using Autism Spectrum Australia (ASPECT). They are getting assessed this week. Very positive experience thus far but will update when complete.

Autism Spectrum Australia

http://www.autismspectrum.org.au/

02 8977 8300

Lizard Centre

http://www.lizardcentre.com/

1300 326 484

What to do while waiting Assessment

Early Days Workshops

The Early Days online workshops provide information on various topics related to autism spectrum disorder (ASD). They also help you build a personal plan that you can put into practice at home with your own child and family. The workshops have been developed to provide the latest evidence-based information about ASD and equip participants with some skills needed to promote their child’s early development.

Early Days workshops include topics on

  • Building your resilience to stress
  • Managing stress
  • Supporting siblings
  • Video modelling
  • Self-management
  • Sleep
  • Fathers

 Livvi’s Place Playground

Livvi’s Place is my favourite playground.  It is at Timbrell Park on Henley Marine Drive at Five Dock and it is a “all abilities playground”. For more information read some of my early posts

Researching funding

Check out my posts on Navigating the Funding Maze posts

Photo by Gyorgy Bakos on Unsplash

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Disability

M-CHAT – Picking up on the Early Signs of Autism

by bronwyn
written by bronwyn
boy holding block toy

Can you believe it is half way through February already. This year has just had everything go so fast. I have some wonderful news that I will share over the next few posts but I wanted to start another series of posts on Autism that I have up my sleeve leading up to World Autism Awareness Day and Autism Awareness Month in April.

So to start us off I wanted to start with a topic very close to my heart and that is screening. I know as a first time parent I thought that my LittleMan was no different to any other child. He has his strengths and his weaknesses and seemed to just glide through 95% + of the milestones. What I didn’t know was the signs to look out for Autism … I didn’t know that not pointing was a big deal or that his ‘interest’ in wheels was such a big deal. I just thought everything was OK .. the big thing for me was speech. That was my big clue. But I now know that there were many signs I missed because I just didn’t know and to be honest I don’t think that the nurses or GPs that were helping knew what to ask or look for either … More needs to be done on screening for Autism and developmental delays … but there is much that as parents we can do now.

If you are a parent of a child 16-30 months please read this … or if you know someone who has a child in this age bracket please share. This act may make a huge difference in someone’s life.

What can we all do to better identify children with Autism and get them the help they need ASAP?

Research now suggests that children as young as 1 year old can show signs of autism. The most important thing you can do as a parent or caregiver is to learn the early signs of autism and understand the typical developmental milestones your child should be reaching at different ages. Validated screening for autism starts as young as 16 months. If your child does have autism, early intervention may be his or her best hope.

The American Academy of Pediatrics (AAP) has recommended that all children receive autism-specific screening at 18 and 24 months of age, in addition to broad developmental screening at 9, 18, and 24 months. The AAP recommends M-CHAT Modified Checklist for Autism in Toddlers (M-CHAT) as a tool that can be used for this screening.

The M-CHAT Modified Checklist for Autism in Toddlers (M-CHAT) is is a validated autism screening tool designed to identify children 16 to 30 months of age who should receive a more thorough assessment for possible early signs of autism spectrum disorder (ASD) or developmental delay. M-CHAT is not a diagnostic tool (will not give a diagnosis … but just highlight if further investigations are warranted). The M-CHAT is one of the most rigorously tested screening tools for autism. It has been used to assess thousands of children worldwide. Results of these studies have appeared in numerous scientific journals. You can read abstracts and find links to many of the articles here.

I agree 100% with the AAP and I am a strong advocate for all children to be screened by GPs and nurses when they have the regular health checkups … but until that is done … there is something that parents you can do. You can access the M-CHAT Test online free … please do and take the results to your GP to discuss. It is easy, quick and could maybe make a big difference in your child’s life or the child of someone close to you …

Photo by Caleb Woods on Unsplash

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Inspiration

Favourite Quotations – Steve Jobs – Change the World

by bronwyn
written by bronwyn
Steve Jobs

This is one of my all time favourite quotations. I guess one of the reasons I love this quotation as it makes me think of (not exclusively) but some people I know (or know of) on the Autism Spectrum. They are the misfits, the square pegs in the round holes and have been some of the greatest people to test the waters and push human kind forward.

“Here’s to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes… the ones who see things differently — they’re not fond of rules… You can quote them, disagree with them, glorify or vilify them, but the only thing you can’t do is ignore them because they change things… they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.” – Think Different, narrated by Steve Jobs

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