Taking a Leap of Faith

This week I did something I don’t normally do.  I attended a community presentation/discussion forum about the Australian legislation relating to a National Disability Insurance Scheme (NDIS).  Basically this is about a nationalised system of funding to provide care, supports and services to people with disability across the country.  To date the disability ‘system’ in this nation is described by our own Prime Minister as ‘piecemeal, fragmented and underfunded.’  I believe a significant change is a good thing, and I share the PM’s view about the state of disability in this nation.   I did however need someone to unpack the fine print in the NDIS for me.

Well, attending the forum did this.  The presenters were from DDC and PWDWA (see links below for info on these organisations) and did a really good job at ‘unpacking’ and opening up key areas for discussion, as well as keeping the whole afternoon ‘moving’ along at a nice pace.  Key areas discussed included criteria for eligibility, early intervention, and the nature of the so-called ‘Agency’ appointed to oversee  what has been termed ‘care plans’ (basically what support, services and funding will be allocated for each person eligible) .  There was discussion about the principles relating to these ‘care plans’, whether the role of advocacy needed to be included in the legislation, and what constitutes ‘reasonable and necessary supports’ for people with disability.  See these links for an outline on the key parts of the legislation: http://ddc.org.au/news-ndis/ and http://www.pwdwa.org/.

From the comments and discussions it was evident where people’s passions and concerns lay…There were those with disabilities themselves, some had a special interest in advocating for adults with an intellectual disability, others wanted to advocate for the needs of their own children after they had passed away.  I (one of the younger ones in attendance!) wanted to know about early intervention, possible funding for those children ‘at risk’ of autism, and how the NDIS and the Education sector would interface.  On this point I got ‘fired up’ when outlining my concerns…don’t even get me started…it’s seriously like winding up a jack in the box!

The presenter did a good  job with all of us ‘fired up and vocal ones’ and I was told that in relation to Education and the NDIS the ‘interface’ was not clear…but she said she would follow it up and let me know on this point.

One small remark made by the presenter stuck with me more than any other…it was that ‘we are putting a lot of faith in this legislation.’

Then I had a flashback to my days as an undergraduate studying politics at University.  The Founding Fathers of the Australian Constitution intended for that document to reflect their desire to keep the power with the States and keep a check on having a powerful centralised government.  Would those men ever be shocked now at how the Australian Constitution has been interpreted by the High Court over the past two centuries.  This, along with a number of other factors, has seen the power shift over time from the states to what is now a powerful centralised federal government.

I wonder what history will reveal about this disability legislation? Will successive governments remain true to the intentions of giving people with disability the support and care they need to live their lives …or will there be cost cutting, scrimping during tough economic times, hand balling, exclusions and excuses.   Ultimately, will people with disability and their loved ones be left better off or worse off?   In my cynical moments I wonder how Australia’s care and provision for people with disability could honestly get any worse. I get the feeling with this NDIS legislation that the ‘train has left the station’.

Maybe our job now is to take a leap of faith .  Maybe only the passing of the decades will reveal if Australia remains true to the original intentions of the legislation.  How will the High Court rule when the legislation is challenged? How will the NDIS ‘Agency’ and ‘CEO’ outlined within the legislation decide what each person needs?  Will people with disability and their loved ones truly experience a better quality of life? Who will speak for and advocate for the many, many people with disabilities who literally cannot speak for themselves?   Who will decide what is in their best interests?  I’m trusting that agencies like DDC and PWDWA and the countless others will do their best work and ensure that good outcomes come from this legislation, from this government and from the governments to come.

A complete roll out of the scheme is not scheduled until 2018.  The ‘little baby in mummy’s tummy’ (as my son says!) will be getting ready for school in 2018.  My first born will be on the cusp of high school.  Its a little while off but in this NDIS legislation lies the hope for a better future for ALL  Australians.  In it lies the hope of a global disability community…one that looks to prosperous, developed counties like Australia to give people their basic human rights and be responsible on the world stage.

I’m hopeful that things will BE better because I KNOW this nation can DO better…

And on that note…I hope you all had (or are still having) a Happy Australia Day folks!

Kangaroo with flag pic

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Grab A Cuppa: my (ever expanding) autism blog-roll

Since I began blogging a whole new world of people, and their words, ideas, thoughts, and inspirations have come into my life. I never knew so many people blogged and read blogs! Now I do both. I just wanted to share with you links to some of the blogs about autism that I read. Some I read regularly and some just occasionally…There are more that I want to (and could) add to this list…but right now the pregnant mama is tired and needs to go to sleep! I also want to let you know that I’m waiting for my hubby to show me how to add a blog-roll to my own blog page- (actually…maybe I’m just waiting for him to do it for me!).

Grab a cuppa, pull up a couch, put your feet up and enjoy this list!

cup of tea photo

Autistic Bloggers:

“The Aspie Side of Life” : http://aspieside.wordpress.com/

“Tiny Grace Notes: AKA Ask an Autistic”: http://www.tinygracenotes.com/

“Unstrange Mind: Remapping My World”: http://unstrangemind.wordpress.com/

“O The Places I’ll Go: My Life With Autism”: http://makingprogresswithautism.blogspot.com/

“Stimeyland”: http://www.stimeyland.com/

“Yes, That Too”: http://www.yesthattoo.blogspot.com/

Autism Parent Bloggers*:

“Mommy Buddy From the Planet Autism”: http://mylittlemartian.blogspot.com/

“Autism Daddy”: http://www.autism-daddy.blogspot.com/

“Flappiness Is”: http://www.flappinessis.com/

“Raising Rebel Souls”: http://raisingrebelsouls.blogspot.com/

“Reinventing Mommy”: http://reinventingmommy.blogspot.com/

“Go Team Kate”: http://goteamkate.com/

“Mama Be Good”: http://mamabegood.blogspot.com/

“Just a Lil Blog”: http://blogginglily.blogspot.com/

“Autism and Oughtisms”: http://autismandoughtisms.wordpress.com/

“The Tumultuous Truth”: http://sharon-theawfultruth.blogspot.com.au/

“Different Kinds of Normal”: http://differentkindsofnormal.blogspot.com.au/

“Snagglebox”: www.snagglebox.com (Practical Parenting Help)

* Many of these Parent blogs also have the Facebook pages and Twitter accounts.

FaceBook Pages

http://www.facebook.com/paulakluth (Paula Kluth has her own website and writes books)

http://www.facebook.com/AutismWithASideOfFries?fref=ts (also blogs)

http://www.facebook.com/pages/Big-Daddy-Autism/106568736068490 (blogs and has written a book)

http://www.facebook.com/ollibean.disabiliity.done.differently (Uniting disability-centric news)

http://www.facebook.com/thautcast?fref=ts (ThAutcast)

There is enough inspiration and information on all of these sites to keep you going for years to come! Thanks for reading x

9 Ideas for the School Holidays!

1. I aim to get down to Leighton Beach in Fremantle on the 19th January for the ‘Let’s Go Surfing Day’.  ‘Disabled Surfers WA’ takes people of all age ranges and different disabilities out onto the surf as well as providing fun activities on the beach also.  If you miss the January date there are also events in Feb and March.

If you or your child does not have a disability you may like to volunteer! The organisation is looking for volunteers to help set up, cook sausages and help out generally on the day.  It could be a fun morning of swimming for your kids plus they may love the added experience of helping out others in this way.

http://disabledsurfers.org/wa/perth-branch/

For those living on the East Coast of Australia or on holidays to Sydney check out the  ‘Try Sail Days’ .  There are events throughout January and the events are run by volunteers at the not for profit organisation ‘Sailors with disAbilities’.

http://www.sailorswithdisabilities.com/calendar

For my USA readers I would recommend ‘Heart of Sailing’.  I have been on this free sailing boat ride with my family and it was one of the highlights of our time living in San Diego.  It is a not –for-profit that runs free sailing events catering for children and families with developmental disabilities.

http://www.heartofsailing.org/default.asp

2. My next pick for the summer is Scitech WA.  If you get there as doors are opening the crowds may be a bit smaller!  If I think it will be too crowded I try and take another adult with me just to be on the safe side. The good thing about Scitech is that it’s indoors and has air-con!  My son adores the ‘hands on experience’, loves the puppet shows and the Planetarium show.  There are also ‘special days’ on during the summer-I think the Marine Science Open Day on Jan 19 (for 7 to 12 years) looks like fun.  I have also found the staff at Scitech to be helpful, patient, and understanding in relation to my son.  After a few bad experiences at the hands of staff at other venues in WA, it is refreshing to know that when I need support from the staff at Scitech they come through for me (and my son) every time. I did hear on the grapevine that the staff at Scitech had done some Autism Training … and it shows!

http://www.scitech.org.au

3. Craft. My son loves dot-to-dot sheets and mazes.  He also enjoys work books with alphabet and maths activities (a special interest for him).  I buy the $5 workbooks from K-Mart and we have fun for hours!  Also drawing faces, naming them, and adding some ‘googly’ eyes amuses us both no end.  A packet of googly eyes cost about $2.  My mummy mate of mine gave me this other awesome craft idea…its clear contact that been taped to the window sticky side facing the kids and then ‘decorated’.  She assures me it kept her kids happy for ages.  I can’t wait to try it!

jan 2013 iphone 064

4. Fishing.  A friend invited us to meet her and her family at the river for some fishing.  Fortunately she had all the equipment.  I have never taken my son fishing before and I really didn’t think he would be that interested in it.  I was wrong.  He loved taking turns with my friends kids and was intrigued by the whole process of baiting and casting.  Plus the kids all caught a few ‘blowies’ each which was enough to keep them engaged and then the blowies got thrown back in the water by the adults.  We also took a frisbee down to throw around and with a bit of a picnic added in, it was a really lovely activity. Fishing is on the list of things to try again.  Sometimes it pays off to branch out and try new things-you and your child/ren may find a new passion!

5. For a more low-key day when it’s too hot to be outside we go to see a kids movie, and combine it with a freshly squeezed juice from a juice bar, lunch in the food court and a little wander through the shops.  My son lasts about one hour in a movie, sometimes a bit longer.  But he knows the little routine now of juice, movie, shops, wander and it is quite nice and he can walk next to me pretty well.  It has taken some practise to get to this point as he is really not a fan of big shopping centres.  I am just careful not to push it by trying to go shopping for too many things myself when he is with me.  I remain sensitive to ‘where he is at’ and if he is unable to walk next to me, or is not coping with the crowds and noise we bail.  Most times however this activity can fill a hot morning quite nicely.

6. For keeping your kids cool (when the pool and the beach feels like work)….you just need a hose, a bucket and a trampoline!  Maybe add it some water balloons too. Summer Gold!

Summer

Summer

7. Find a school holiday program.  Every mum needs a break…summer holidays are long!  Whether it’s a local vacation care or day care-if you child has a diagnosis they may be eligible for a support worker funded through Kids Australia (NOR) or Communicare (SOR).  If you are having trouble finding an appropriate centre call the Children’s Services Officer at your local council, they will be able to advise you about what is available.  If you are having trouble paying for your child to go to day care or vacation care call your LAC (if you have one) or call Carelink on 1800 052 222 and discuss (advocate for) your needs with them.  If you are looking for a special needs school holiday program then contact Activ-Beckenham (SOR), Friends of Autism (NOR), Kalparrin at PMH or Community Vision (NOR) for different programs that they run during school holidays. Even if you can’t get into something for January-if you book right now…you may be glad you did come Easter!

http://www.communities.wa.gov.au/childrenandfamilies/childcare/Pages/ChildrensServicesOfficers.aspx

8. If you are looking for a fun holiday events for siblings of special needs kids then Kalparrin also runs one day events that cater for siblings and are funded by Disability Services Commission.

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

9. Check out the Kids Guide Perth for free stuff to do. Plus the Nature Play WA website is pretty great too-some lots of free stuff to do-some may just need to wait for the cooler months though.

http://www.kidsguideperth.com.au/article/free-school-holiday-activities-perth-2/

http://www.natureplaywa.org.au/

With only 4 weeks left until school goes back- I hope these ideas are helpful.  Enjoy your summer.

Love Conquers A Cliche

I have said this line myself (before the birth of my first child) and I heard it said again recently by a distant family relative… ‘So long as the baby is healthy…’

It jars me a little to hear it said now.

The ‘so long as they’re healthy’ line usually follows the ‘are you going to find out if it’s a boy or a girl’ conversation. It’s a bit of cliché that people say I guess ‘…it doesn’t really matter if it’s a boy or a girl…so long as they are healthy.’

It just doesn’t sit quite right with me anymore.

It is definitely not the worst thing in the world to want health for your child! It is kind of others to wish that for your child. So long as that child is loved, cared for, supported, included and accepted if they are not healthy. Not only by the parents but by the entire family, the community and society at large.

Because… what if your child is sick, pre-mature, has a medical condition, has a disability, or suffers complications during birth. What if the baby ‘appears’ healthy at birth then develops a seizure disorder, eating disorder, anxiety disorder, any mental health disorder, or some other rare condition that nobody seems to have heard of and that only happens to 1 in 100, 000 children but that 1 is your one. What about global developmental delay, intellectual disability, bowel problems, heart disease, asthma, deafness, vision impairment, cancer.

When we hope for a healthy child do we also include in that list the desire to wish away from our adult children chronic back pain, morbid obesity, addiction to drugs and alcohol, STD’s, AIDS, bi-polar, dementia, engagement in criminal activity…

You get my drift…

Not many of us have or live completely healthy lives from start to finish…completely free from all ailments and afflictions. Infact “ health” seems to be the biggest spectrum of all, one that we all sit somewhere along.

Maybe we would be better off saying to our pregnant loved ones what I say to myself given that my beloved first born son has autism and that I am now pregnant with my second. ‘Now that I am having another child …it doesn’t ultimately matter what the issues are…because I love this child…I will do my very best to care for my child whatever his or her struggles (health or otherwise) may be… it will not be a disappointment if my child does not turn out how others might have envisioned… because I will love this child…my child…no matter what.’

Just the way I love my son. With my whole heart.

jan 2013 iphone 225

Kiddo in yellow fishing with friends