Cruising the Whitsundays

 

 

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Last week, Dan and some of his friends from Yellow Bridge boarded the P & O cruise ship, the Aria, and headed up to the Whitsunday Islands for a four night cruise. The Whitsundays are a group of islands 900km north of Brisbane in the heart of the Great Barrier Reef. They are a very popular tourist attraction, with white sandy beaches, blue tropical waters and offer a range of activities for tourists.

It is not always easy for people with disabilities to go away for a holiday with their friends, so this was a very exciting opportunity. Yellow Bridge, Dan’s main service provider, organised the trip, which made it a lot easier. Dan has been on plenty of family holidays, but this was the first time he had been away on a holiday with his friends. And the first time on a cruise!

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 Taking a cruise with your friends sounds like such a simple thing that most people just take for granted, however for people with disabilities it takes a lot of organisation. Dan requires support and supervision 24/7. He cannot go anywhere unaccompanied. This is where the NDIS has made a huge difference to the lives of people with disabilities. Prior to the NDIS, family members, especially parents, have fulfilled the role of full-time carer, taking their child here and there, and providing the assistance for daily activities. But there comes a time in a young man’s life when it is no longer appropriate to be always accompanied by your mum. So with the help of Dan’s NDIS funding, he was able to go on the cruise with the assistance of a support worker.

I wasn’t worried about Dan going on the cruise. He had been away on school camps before and they had always gone fine. But as parents, there is a whole lot of little things about our child and their routine that support workers don’t know – hygiene routines, dietary information, managing spending money, anxieties or phobias… Most of the time these things are not written down. It’s all in our heads. But it is this kind of information that needs to be passed onto the support worker.  To avoid a verbal info dump, I prepared a two page document with all the information the support worker needs to assist Dan. This is actually a very important thing for all parents who have an adult child with a disability to do. Especially if your child is non-verbal, like Dan. One day we won’t be here and nobody will be able to retrieve the information stored in our heads.

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In the lead up to the trip, we had talked a lot with Dan about his “holiday on a boat” so by the time the day came, he knew what was happening: bus, then boat. He was very excited to pack his bag and couldn’t wait to get going. Fortunately Yellow Bridge had organised a bus from Toowoomba down to the port, and Dan couldn’t wait to get on the bus. Too excited to even worry about saying bye to mum!

It was very quiet at home. Dan loves to sing and annoy his sister, Bec. You don’t realise all the little things you do, the support you provide, how your whole daily routine revolves around your family member with a disability. It gave a little taste as to how life might be when Dan moves into some kind of supported accommodation in the future.

 

The Time of His Life

Yellow Bridge staff kept us notified about how the cruise was going and I received a few photos from his support worker and knew that things were going great. They dressed up for the theme nights – the P & O White Party, the Anchors Away Sailaway Party and the Gatsby Party. They played Bingo, went to the theatre shows, went swimming in the pool, and had plenty to eat. One day they visited Airlie Beach where the support workers helped Dan choose an appropriate gift for Mum. When I picked him up at the end of the week, they told me that Dan had the time of his life. He danced and he danced and he danced and he danced. And at home on the weekend…he slept.

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Dan is not able to tell us much about his cruise but we can see how much fun he had by the photos and videos taken on his iPad by both him and the support worker. All the photos above were taken by Dan. It is so great to see Dan doing the kinds of things that other young men his age are doing and we look forward to Dan having more holiday adventures in the future.

 

 

 

 

 

 

NDIS Review 2019

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The last few weeks have been quite stressful as we finally moved into our new house and completed our third plan review with the NDIS. Moving house is surely one of the top ten stressful events in life. You would think that after 18 previous moves, I would have this down pat. Nope. It was just as chaotic and stressful as ever, and after weeks of packing, moving and unpacking countless boxes, I have been feeling quite exhausted. I have been so tired I have barely done any reading and to top that off we are currently in a period of slow internet. The first week after our move the internet service was perfectly fine. But as a result of changes to the fixed wireless service, which I sincerely hope are temporary, it has almost ground to a halt. The speed is painfully slow. Some days we struggle to even read a blog post, let alone write one. Just as well Bec and I are on a study break over Christmas and New Year.

In the midst of all the packing and moving, we also had to contend with Dan’s NDIS review – another stressful event. At this point we are still waiting to see the outcome of that review and Dan’s new plan for the coming year. It is a particularly anxious time as we never know when the new plan will start until it does. This is one of my particular grievances about the implementation of the NDIS. Dan’s plans have never started and finished on the same date every year. Each time, the new plan has started early, meaning that Dan loses time and funding still available in the previous plan. It’s a very sneaky way of trying to save money which actually deprives clients of funding. It’s also an anxious time because you never know if the NDIA will consider Dan’s goals and requests for support as reasonable and necessary. To support Dan’s communication needs we are hoping for a considerable increase, but we won’t know until we see the plan.

Despite my grievances, and there are a few, the National Disability Insurance Scheme (NDIS) is a social change that is well overdue and it is providing support for Australians living with disability. It is an ambitious undertaking and I don’t think people realised how many people with disabilities there actually were out there in the community being cared for by their families. There were many senior aged people still caring for their middle-aged disabled children. Many of these had probably fallen through the cracks and were receiving very little support, if any.

Dan was able to join the NDIS when the scheme rolled out in Toowoomba in 2017 so we are approaching the end of our third year. To be honest, it has been quite stressful and has created a lot of extra work for me, but in the long run, we hope that it will create a life for Dan so that we won’t need to worry (at least not as much) about what happens when we are no longer around to care for and advocate for Dan. At this stage, I feel there is still a long way to go before families can feel confident about their family member’s future and welfare.

Our approach to the NDIS has been to focus first on Dan’s life Mon to Fri, then slowly extend that. When trying to visualise a life for Dan I try to think about what the typical 23 year old young man does. He is either studying or working (or looking for work). So first of all, we focused on creating a fulfilling and purposeful weekly schedule for Mon to Fri. With Dan’s NDIS funding, we have been able to purchase support time from a disability support provider. This is a mixture of group support and one to one support. In the group support, Dan joins other young people with disabilities and does peer- appropriate activities, like bowling, going to the gym, cooking pizzas. During his one to one time, Dan has the opportunity to do things he is personally interested in, like swimming and bushwalking.

Then we expanded his support to include social activities on the weekends and respite either at home or in the community. Dan and some of his mates get together for a boys group that meets monthly for social activities. Dan has also had some one to one support on the weekends to do thing he likes and give us time off. One of the downsides though, is the lack of spontaneity. People without disabilities are able to make plans on the spur of the moment and just do it. It’s not that easy for Dan. A social activity for the boys group requires weeks of planning and support needs to be rostered well in advance. Even for us, if we wish to have some respite, we have to plan it well in advance. I can’t do a girls night out on the spur of the moment. I would need to have at least a months notice in advance so I can organise support for Dan. The NDIS may provide the funding, but a lot of planning, decision-making and budgeting is required by families to make it all work. Who will do this when we are not around?

For the coming year, communication remains a top goal for Dan. Many people probably take their ability to communicate for granted. Imagine how difficult your life would be if you were not able to communicate your basic life needs, let alone your desire for social and leisure activities. I often describe Dan as non-verbal. It’s not strictly true, but it’s often the easiest way to describe Dan to people who don’t know him. Dan can say quite a lot of words – just not together, in one sentence. He can answer a question, yes or no, but he tends to answer every question with yes, so there is some doubt about the accuracy of the answer. Dan also loves to sing. He can sing whole songs but cannot have a conversation or even request something without assistance. Of course, we have learnt to understand Dan’s cues and we know what he likes or needs. But people who don’t know Dan well have no idea. Good communication is essential for everybody, especially people with disabilities who are dependent on the support of others for everyday life.

Last year we were able to use Dan’s funding to purchase some communication software. It was an interesting experience that highlighted the need to have Dan’s plan managed by a Plan Manager rather than the NDIS. Initially it was good to have it managed by the NDIS while we were getting the hang of things. And it worked well except for one thing. When the NDIS manages the plan, you can only use providers who are registered with the NDIS. For the most part, this isn’t a problem. I have always been careful about which providers we select for Dan. I want to make sure they are experienced and know what they are doing. There has been such a flood of providers start up since the NDIS, and sadly, some of them are just in it for the money. This year we used a Plan Manager and it has provided more flexibility, especially when purchasing items for Dan’s use. It also allows us to engage a therapist or service provider who may not be registered with the NDIS. Some service providers are finding working with the NDIS to be quite onerous and are choosing to leave the scheme. If this were to happen to one of Dan’s service providers in the future, Dan would still be able to continue with the people who know him and with whom we have developed a good working relationship.

So now we are just playing the waiting game. We have had the meeting, answered all the questions, talked about Dan’s goals for the coming year and the level of support he will need. The service providers have submitted their reports and fortunately we are all on the same page about Dan’s need for higher levels of support. Fingers crossed it will be a good outcome. If not, we will be requesting a review. And unfortunately, that can take up to nine months. I would like to feel confident about the new plan – but I’m not. I’ve met many parents in the same situation and heard too many stories, so I know you have to fight for everything. Who will do the fighting when we are no longer around?

 

Breaking the Communication Barrier

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Communication difficulties and autism go hand in hand. It might be misunderstanding facial and body cues, taking things too literally or just physically getting the words out. Dan’s communication difficulties were the first indication that something was different. It was a very frustrating time for all of us. There was a lot of pointing, leading and screaming as Dan tried to communicate his needs and wants. Over the years we trialled a few different communication systems, from Makaton signing and the Picture Exchange Communication System (PECS) to a specific communication device. Each system had its benefits and  disadvantages. 

Makaton is a form of sign language which uses key words. It didn’t require any special equipment apart from hands, however it was the child who did not need to use the signs, Bec, who was the one using them. Dan, the child with the communication difficulties, took some convincing initially to use the signs. Signing was effective but it only worked with people who also knew the signs.

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 PECS involved the use of  picture cards called Compics – Communication Pictures. The exchange part of the system was very important because it taught Dan that communication is a two-way process involving other people. He had to physically take the picture and give it to someone and in a sense, this is what communication is all about, the giving and receiving of messages. It took a little training for Dan to get the idea, but I can still remember the day he first used the cards to initiate a request. I was so excited I felt like running out into the street and telling everyone. PECS was a great system because anyone could read the cards and know what Dan wanted. It did require a laminator, though and metres of velcro dots (I should have bought shares in a velcro company!) and the folder that Dan used to hold the pictures was a little cumbersome to cart around. 

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Then towards the end of primary school we were able to access some funding to get a small hand held communication device. This device used the same kind of Compics as PECS but also had speech. Dan actually learnt some speech by imitating the sentences verbalised by the device. It did work, as long as teachers and aides used it. And this has been a primary issue  – communication systems only work as well as those who know how to use them and actually remember to use them. 

The introduction of iPads, iPhones and other devices has opened up a new world for those on the spectrum. For quite some time I had been keen for Dan to try using an iPad for communication. He is pretty quick at learning how to use technology – you just have to ask his grandmother about that. He kindly updated her apps on her iPad without her knowledge. Well, finally Dan has an iPad and is using it to communicate but it has been a very drawn out and frustrating process. 

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You would think that a device that enables Dan to communicate would be a support that is both necessary and reasonable. Unfortunately, the NDIS didn’t seem to see it that way. We were able to access funding to trial different types of software. There are a few different ones on the market and we needed to know which one would be right for Dan. One size does not fit all. We eventually settled on a program called Snap+Core First. The next step was actually get an iPad for Dan.  This was something the NDIS would not fund, even though it was going to be specifically used as a communication device. They would fund a specific communication device but not an iPad. I suppose they thought it would be just used for entertainment! So we bought the iPad.

Then we had to get the software. Simply a matter of downloading it from the App store, right? No, not so simple. The NDIS would fund it, but we could only purchase items from NDIS registered providers. Apple was not a NDIS registered provider. Fortunately this was easily solved by purchasing some iTunes cards. Now Dan should be ready to go. 

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No, not quite yet. During the week Dan is out and about in different places with different support workers. How could we be sure the iPad wouldn’t get lost or dropped? We have already had so much trouble with losing hats – four hats in one month! And before that, it was losing his wallet – at least four times too. Sometimes I do wonder what is going through some support workers heads when they are with Dan. So a better case and shoulder strap would be required but this had to be ordered from a disability supplier. Now this was something the NDIS would fund, but for some bizarre reason they would only forward the money to purchase the case in dribs and drabs. By the time we finally got the full amount, which was not a huge amount to start with, the price had gone up! 

More than a year after we completed the software trial… we have now got the iPad, the software and the new case and Dan has started taking it with him every day to Yellow Bridge. Dan has been very quick to learn to use it. He is able to construct sentences, request items, ask questions and make comments. He even knows how to add new pictures and words to the categories and how to use the search function when he can’t find the word he wants. He also loves using the camera to take photos of the places he has been. He likes this so much we have multiple copies of everything! I think he just likes to stand there and keep pushing the button! Dan still needs to be encouraged to get it out and use it – initiation has always been a challenge – but it has opened up a whole new world of possibilities for Dan.

Now we just have to train the workers…Version 2

Hanging Out with the Boys

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Hanging out with your friends is something that most young people take for granted. Going out for a drink, watching a movie or cheering your favourite sporting team are all rites of passage on the journey to independence. Young people meet up, hang out and bond together spontaneously without hardly a second thought.

But if you’re a young person with a disability, it’s never quite that simple.

Dan has always had a positive relationship with his peers, with or without disabilities. During primary school, the other kids accepted Dan for who he was, included him in group projects in the classroom and invited him to the occasional birthday party.

Something changed though, when they all moved to high school.

High School is a Totally Different Ball Game

It goes without saying that high school is a totally different ball game to primary school. Having one main class teacher enables a much greater focus on inclusion than the wide range of subject specific teachers that occurs at high school. But something else happens too. Adolescence. 

Adolescence is one of the most trying and challenging times of a young person’s life. As they struggle with figuring out who they are and how to fit in, the kids with disabilities are no longer cool. It’s not that their attitude towards people with disabilities has necessarily changed. It’s just no longer cool to include the boy with autism. While they mostly still had a positive attitude towards Dan, the impetus to include him socially was no longer there.

I’m not blaming anyone here. It’s just what happens. And it leaves a lot of young people with disabilities isolated.

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People with disabilities want the same things that people without disabilities just take for granted – acceptance, friendship and a fulfilling life.

Despite having autism, Dan is very social. He loves being with people. He has a very loving and accepting extended family and he is always included in all family activities, but it’s not the same as having some friends of your own.

This is where the NDIS really comes into its own. You can read about our journey with the NDIS here. 

Prior to the NDIS, for Dan to participate in social activities, I had to tag along. Now that’s okay when you’re young. But having your mum tag along when you’re 20 something is not cool at all. Yet this was the case for many young people with disabilities.

The Boys Group

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With this in mind, families and Yellow Bridge got together this year to create opportunities for a group of young guys with disabilities, like Dan, to be able to socialise together informally. For want of a better name, we currently call it The Boys Group. Over the last few months, the guys have met each month and just hung out together. They’ve had dinner, played laser tag, watched footy, been to the circus and, later in the year, will be attending Shrek the Musical at the Empire Theatre.

Without the NDIS, this would have been impossible.

Without the NDIS, these guys wouldn’t be able to socialise together without having their parents tag along. Now they can hang out together with support workers, who are also young guys, just like them. I can never emphasise enough just how impressed I am with the number of young people I see choosing to work as disability support workers. It really warms the heart and instills pride in our young people.

The NDIS has come in for a bit of criticism of late, and sometimes, rightly so. But, it is early days. It was always going to be an ambitious undertaking to provide the financial support so that people with disabilities can lead independent lives full of meaning and purpose. There were always going to be teething problems and we just need to keep moving forward, working together to make it a reality.

For now, I am just grateful that Dan has the opportunity to be a typical young guy and hang out with the boys.

 

Life with the NDIS

The National Disability Insurance Scheme (NDIS) has been progressively rolled out around Australia over the last few years. It is a scheme designed to provide individuals with disabilities the support they need to live a life that is purposeful, fulfilling and as independent as possible. Here in Toowoomba, the NDIS started at the beginning of this year and it has been an interesting journey for us all.

Prior to the NDIS, Dan had been granted some disability support funding but it was limited. We were able to get Dan into some group activities at Yellow Bridge, but for the most part, wherever I went, Dan went and wherever Dan went, I had to go too. And this is the way it would probably have continued, well forever.

The NDIS has changed Dan’s life

But the NDIS has brought a significant change to Dan’s life, as well as our own. The transition process was definitely quite stressful as we negotiated the paperwork and planning conversation, however his funding package has allowed us to set goals we thought would be a long way off. Dan has continued to participate in the group activities he enjoys so much, like cooking, singing and dancing, bowling and making music. He has also been able to have some one/one support to pursue his favourite activities, like swimming and bush running.

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For so long I have been Dan’s major support and carer. As parents caring for a child with special needs, we don’t stop to think about all the assisting, prompting, supervising and decision making we do. We have done it for so long, it is just a natural part of our life. It can be difficult to even conceive how life could be any different.

A different way of thinking

The NDIS has brought about a change in thinking. Suddenly, I can go places or do things without Dan having to tag along. Dan has the opportunity to participate in activities that regular guys do, without having to have his mother tag along. Over the last month, Dan has gone to a disco, been camping, and had a movies and pizza night with mates – all perfectly normal things – with the help of a support worker, who is probably far cooler than his mother.

It feels a bit strange though. It was really weird when Dan went camping. The house was so quiet. Instead of prompting Dan through every step of the night routine, I could relax, watch TV, read a book, and all the while, Dan was having a ball with his mates at Cressbrook Dam. The next morning I didn’t have to get out of bed at 6am to take Dan to the toilet. I could sleep in. It was so unbelievably quiet.

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On Thursday Dan is going to Dreamworld on the Gold Coast for a Christmas break up with Yellow Bridge. For the first time, I am not going with him. It’s not that I don’t like spending time with Dan. I do. It’s not that I don’t like Dreamworld either. It’s time for me to start stepping back. And the NDIS has allowed me to do that. Dan will go with a support worker and probably have way more fun on the rides than with me. Besides, how many 21 year old young men go to Dreamworld with their mother.

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I am starting to wonder what the future might hold for Dan and us. It will be strange when my days are no longer filled with transporting, prompting, assisting and supervising. At the same time, I look forward to it. Of course I will miss Dan terribly when he is no longer living with us, but it is only right and proper that he have his own life. And that would not be possible without the NDIS.

Special Needs Disco

 

 

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Dan attended his first disco on Saturday night. With Christmas just around the corner, there was a theme of silver or gold, so Dan wore a sparkly silver hat and a silver tie with his black shirt. He looked pretty spiffy, although I’m probably biased.

The disco is a monthly event run by the local Down Syndrome Support Group, but anybody with a physical or intellectual disability can attend. They have been running the discos since 1996 to provide a safe and welcoming environment, where people with disabilities can enjoy the music, have fun with friends and dance the night away. Each disco has a theme so people can dress up and the hall is decorated to fit in with the theme.

Some of Dan’s friends from Yellow Bridge have been attending the discos for quite some time, but this was Dan’s first time. Thanks to his NDIS funding, Dan was able to attend with a support worker and apparently they both had a great time.

 

 

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I’m not surprised. Dan has always loved music. When he graduated from high school in 2014, his dancing was the highlight of the evening at the Year 12 Formal. His classmates formed a large circle, clapping and cheering, while Dan took centre stage in the middle, dancing in his own unique style. This usually involves running around in circles, leaping over obstacles, and clapping his hands high in the air, while his face is lit up with pure joy.

All through Dan’s schooling, I was always impressed at the way his peers just accepted him for who he was, finding ways to include him in group activities and cheering him on, whether he was running down the lane at the athletics carnival, performing on stage in the school musical or stealing the limelight on the dance floor.

A few weeks after the Formal, I met one of the other mums down the street who commented on Dan’s love of music. She said that Dan’s dancing had been the highlight of the evening for her husband. When Dan is singing and dancing, people cannot help but be infected with his effervescent happiness and joy.

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It is so rewarding to see Dan go out and do all the regular things that guys his age do. After all, that is what we all want for our children, to see them happy, enjoying life and participating in the life of the community – just like everyone else.

Saturday night may have been Dan’s first disco, but I’m sure they are going to be a regular event on his social calendar.

I hope that your days are filled with effervescent joy and happiness too.