Richard Powell, Canine Assist’s Managing Director, witnesses this occurrence on a daily basis through the organisation’s canine capacity building programs.
We spoke with Richard to learn more about canine capacity building, how people can get National Disability Insurance Scheme (NDIS) funding for it, and his favourite thing about dogs.
Canine capacity building is about building a person’s capacity to participate in activities and the community with the support of a dog.
At Canine Assist, our team members and dogs work with our clients to build their confidence, ability, social skills and communication, so they can achieve their goals. We do this both in our centre in Morphett Vale in South Australia and out in the community,
We offer a short ‘Six Week Canine Superstar Program’ where clients have sessions to build their capacity alongside one of our dogs. Then, if they think they’d like an assistance dog, they can apply for our longer ‘Canine Assist Better Handler Program – The Assistance Dog Pathway’. At the end of the course, we gift participants an assistance dog.
There’s no such thing as a typical session because everyone is individual in what they want and what they need. A session could involve going to the cinema or going shopping, or even going to high tea – it completely depends on what the participant would like to achieve. No matter what, a session is always with the support of a dog.
It’s overwhelmingly positive – we like to measure success with smiles.
We have a 10 year old client who, until recently, had never had his feet sized because he had been afraid of getting his feet trapped in the shoe fitting device. So, in one of our sessions, we went to a shoe shop with one of our dogs. The dog got its feet measured first, and after seeing that, the client felt comfortable to get his feet measured too. The client was supported by the dog to overcome a fear, and his mum was happy she knew which size shoes to buy him!
Definitely not. I can tell you our youngest client is four years old and our oldest is 83.
Yes! I’d say 50 to 60 per cent of our clients don’t have a dog. Canine capacity building lets people experience what being around a dog is all about and what support a dog can provide. If someone is considering getting a pet dog or an assistance dog, sessions can even help people decide what breed is suited to them. We often give people advice about breeds and breeders.
They can speak with their local area coordinator or support coordinator about their plan. If a participant has a goal about increasing their social or community participation, funding can come under the Capacity Building Supports budget and the Increased Social and Community Participation category.
The unconditional love and support they give. Right now, I’ve got my own assistance dog, Lulu, sitting opposite me. She’s looking at me and making sure I’m alright. If she notices I get heightened or down, she’ll come sit with me. She makes the world of difference.
Melissa: A few things. Firstly, I’d run my own business before – a nanny service. Secondly, I have complex regional pain syndrome and I find having a distraction helps me manage my pain levels. Lastly, I’m a creative person. I’m an artist and I love jewellery, so design was another direction for me to channel my creativity.
Melissa: I’ve done lots of paintings, drawings and portraiture. Working with big canvases can get quite painful though, so working with jewellery is still as enjoyable, but much more manageable.
Melissa: My pain levels in the morning are quite bad, so I usually don’t start until 11 or 12 o’clock. Then, I’ll be doing something jewellery related for the day - that could be designing, constructing, repairing or computer work, like working on my website or social media accounts.
Some days I’m able to do more than others, so it’s important I don’t put too much pressure on myself to achieve a set list of tasks. I’m pretty lucky that my customers are understanding if I need to delay making or sending a piece by a day or two.
Melissa: In three words – intricate, bold and unique. Many people tell me they haven’t seen designs like mine before and that’s great for me to hear. All my jewellery is handmade from materials including silver, gold, jewellers’ wire, crystals, pearls and charms. I’ve created a huge range of necklaces, earrings, rings, and fidget rings for anxiety. Something else you’ll notice about my jewellery is that I like to incorporate the meaning of crystals in my creations.
Melissa: I mostly sell my jewellery through my website, and I’ll sometimes sell at local markets. I also showcase my work on Instagram (@love.creates.jewellery) and Facebook.
Melissa: My jewellery making and my business are part of my NDIS plan goals. My occupational therapist is currently working on my plan with a view to making it more supportive and useful to me. I have a team of support workers that support me with a range of things, and there’s one support worker in particular who assists me on market days by setting up and packing down my stall and speaking with customers. Market days are painful and exhausting for me, but I love being part of them!
Melissa: The main thing I do it for is to be contributing to society. If you live with disability – especially a physical disability – you may feel unable to go and work in an office at set times. When you can work your own hours and do your own thing there’s a double benefit – you get to have flexibility and ownership over what you’re doing, and you can contribute to society at the same time.
I personally hate sitting around doing nothing. I’d much prefer to be earning and contributing.
Melissa: The first thing I’d say is it’s nowhere near as daunting as you might first think! Planning is everything, so working out what you want to do is your first point of call.
Local, state and federal governments all have lots of resources and helpful information that you can access on starting a business, and getting an Australian Business Number (ABN) and a business name can be done online.
Melissa: I’d like my jewellery business to take off a bit more – that would be great! A lot depends on how my condition progresses, but I would also love to do an exhibition with my art.
You can browse and buy Melissa’s jewellery via her website. If you’re in the mood for a podcast episode (or two), check out Melissa’s podcast ‘Shout out – all things disability.’
Released last month, the Global report on assistive technology captures for the first time a worldwide snapshot illustrating countries’ need for, access to, and preparedness to support assistive technology.
The report also features stories illustrating the profound impact assistive products can have on people’s lives and offers evidence of the economic and social return on investment in assistive technology.
The report’s release coincides with the launch of Australia’s largest assistive technology store, NovitaTech, owned by South Australian disability service provider, Novita.
So, what exactly is assistive technology? And how can it be accessed by people with disability through the National Disability Insurance Scheme (NDIS)?
Assistive technology is equipment or devices that help people perform tasks that might otherwise be difficult or impossible to achieve because of a disability. It’s a broad term that refers to many tools which can be low or high tech.
Some examples of assistive technology include:
Not all equipment or technology can be classed as assistive technology. If a tool is something that everyone uses, and isn’t related to achieving something that might otherwise be difficult or impossible to achieve because of a disability, it isn’t assistive technology. Examples include kettles, radios and everyday household furniture.
The NDIS will fund assistive technology that meets NDIS funding criteria. When assessing assistive technology, the NDIS will consider whether it:
It’s recommended that new NDIS participants seek advice about assistive technology during their planning meeting. If a participant has a current plan, they might be able to use funding in that plan for assistive technology. Alternatively, they can request a plan review.
In all cases, evidence about the assistive technology will need to be supplied so the NDIS can assess it against funding criteria. The evidence required depends on the category of assistive technology. There are three categories:
The NDIS has created helpful assistive technology guidelines which cover everything you need to know about accessing assistive technology through the NDIS. If you’d like to ask a question about assistive technology or hear about other people’s experiences, head to Kinora – a free online community created by My Plan Manager.
Kinora helps people with disability and their supporters to connect with peers, NDIS experts, disability sector professionals and service providers, assisting them to build lasting connections with the people and businesses who can support them throughout their lives. There’s lots of value in there for consumers and providers, so check it out!
My initial reaction to learning of the Senate Select Committee on Autism’s recommendation that the Australian Government introduce a National Autism Strategy was not positive. There has certainly been a history of governments in this country making rules and regulations for minority groups that end up hurting, rather than helping, some within those groups.
However, reading that (if the recommendations of the Committee are adopted) the Australian Government will create the strategy in conjunction with the nation’s autistic community gave me hope that perhaps people with autism will finally be heard and our needs, as we stated them during the Committee’s inquiry, will be considered.
It was good to read the executive summary of the Committee’s report, Services, support and life outcomes for autistic Australians, which stated that during its inquiry the Committee had heard that many National Disability Insurance Agency (NDIA) staff and service providers ‘seem to lack even the most basic understanding of autism and the kinds of supports autistic people need’. The Committee went further to say this was ‘particularly troubling’ given the high number of autistic participants in the National Disability Insurance Scheme (NDIS).
“However, resolving problems with the NDIS for autistic participants will require a more focused consideration of the issues than was achievable within the broad terms of reference for this inquiry,” said the report.
“Accordingly, the Committee recommends an inquiry be undertaken by the Joint Standing Committee on the National Disability Insurance Scheme to examine how the NDIS supports autistic participants.”
This was a welcome surprise, and I would wholly embrace such an inquiry as I’ve been fighting the NDIA for what I consider to be my basic human rights for the past 16 months.
The extensive report, which was delivered following a two-year inquiry, suggests the Strategy should look at whole-of-life needs for autistic Australians. I’m hoping that means it will look at the things we need over our lifetimes.
I’ve been reading this report and it’s divided up into sections, as one would expect. The first section past the Executive Summary covers the recommended actions the Australian Government needs to take to better the lives of autistic Australians – there are 81 in total. After two years, I would have hoped for more calls to action from the inquiry, but the fact they’ve taken the betterment of our lives seriously is a step in the right direction.
I was pleasantly surprised by the bi-partisan support for, and involvement in, the inquiry. Maybe it’s a tug of war for our votes, who knows? I just hope that whichever party is elected this weekend honours these recommendations and starts to make some real, tangible improvements for us.
Chapter 4 of the report is titled ‘The cost of failing to provide adequate services and support’, and it is what I believe the politicians are likely to really pay attention to – the cost of doing nothing.
Synergies Economic Consulting's ‘Economic Costs of Autism Spectrum Disorder in Australia’ report (the Synergies report), updated in 2011, estimated the annual economic cost of autism in Australia was in the region of $8.1 billion to $11.2 billion (2010 dollars). So, if that is the cost of doing what the Committee’s inquiry showed to be not looking after the autistic community, then surely – if nothing else does – that should help to motivate Canberra to better support our needs.
I do have one gripe about the Committee’s report – and that is that it is a list of recommendations that the next Australian Government can simply ignore. They are not new laws, they’re just a list of suggestions, and if the next Prime Minister, whomever that might end up being, decides to ignore them, there isn’t anything we can do about it.
Well, there is one thing we can do – we can band together and inundate every Member of Parliament, every senator, and the Prime Minister themselves, with emails and complaints about failing to uphold the recommendations. The figures vary, depending on the source, but it is estimated that approximately one in every 70 Australians is autistic. That’s a lot of people, and when you take our friends, family and support networks into account, that’s a huge group of people who can cooperate with each other (with or without assistance) to fill the email boxes of those in power until they have to listen to us.
The more I read the Committee’s report, the more hope I feel for a better future for me and other autistic people.
Hi, I’m Chris. I’m an autistic person. Originally from California, I ran away to Australia as soon as I could. Raised in the country, life wasn't easy with an invisible neurological difference, especially when that difference wasn't widely known about. On top of that, I didn’t even get a diagnosis until my adult years. Looking forward, I want to leave behind some small piece of myself that maybe, if I'm lucky, might make a positive impact.
Specialist housing also has the potential to reduce the need for younger people to live in aged care. Data recently released by the Australian Health and Welfare Institute shows there are almost 3500 people aged under 65 years who are currently living in aged care settings across the country, and each month another 44 people enter aged care accommodation.
We recently spoke with Gretta who lives in Specialist Disability Accommodation (SDA), which she’s been able to access through the National Disability Insurance Scheme (NDIS). She gave us an insight into her journey into SDA and the positive impact it’s had on her life.
Gretta: Really, I had always wanted to move out of home, but it started to become a desire of mine when I saw what life was like for my sister when she was at uni, and I knew I wanted to move out – especially as I grew up in a semi remote part of Sydney.
Gretta: Unlike many, I actually found the apartment I wanted and then applied for my SDA funding. Personally, this method suited my lifestyle perfectly as the location – Penrith – is close to my friends and family.
Gretta: As you would imagine, when I first got my keys, I felt that everything was surreal. This feeling continued until my first night in my apartment when it was mixed with fear, which soon transferred to ease and excitement.
Gretta: One of the first pictures that I hung up was a very special picture that my eldest niece made when she was two years old. It makes me smile whenever I look at it.
Gretta: I have learned so many lessons since I have been living here but the most important lesson I am continuously learning is my ownership over my own apartment as a 31 year old woman.
Gretta: The main thing I absolutely love is being able to get everywhere much easier than I did before.
Gretta: A mixture of feeling surreal and being proud of myself that my major dream came true.
Gretta: My advice is to keep fighting for what you want, as your vision can come true.
If you’d like to learn more about accommodation options for people with disability, you can find helpful information in:
You can also jump on to Kinora - an online community created by My Plan Manager to help people with disability and their supporters to connect with peers, NDIS experts, disability sector professionals and service providers.
Supported decision making is when one person (a supporter) gives another person (a decision maker) the tools and support they need to participate in decision making about their own life. It isn’t the same as having a person make decisions on behalf of another person.
Supported decision making can help the decision maker to build their skills in decision making and develop the confidence to decide more for themselves in the future.
A person who might need support with making decisions is someone whose ability to make independent decisions is affected. Their ability to make decisions could be affected by:
Sometimes people with disability haven’t had the chance to make their own decisions or to gain experience in decision making. Supported decision making is a way of providing a person with disability the opportunity to learn more about decision making and to exercise choice and control in their lives.
Anyone can be a support person if they have been chosen by the decision maker. A support person could be a trusted family member, friend, service provider or advocate.
A decision maker can have one or more supporters - and sometimes, a team of supporters - to assist them with decision making.
A good supporter, or team of supporters, will have respect for the decision maker, value that person’s independence and dignity, and know that person’s goals, values and preferences.
Supported decision making begins with the decision maker, their chosen supporter/s and a decision. The supporter/s will support the decision maker to:
There are many supported decision making resources available for decision makers and supporters. Here are some free, helpful ones we have found:
Like four million Australians, she also happens to have a disability.
Soulaie’s parents raised her to believe she could achieve anything she put her mind to. It wasn’t until she began school and signed up for the netball team that she realised other people believed differently – and, for the first time, Soulaie was subjected to judgement and bias based wholly on her appearance.
In this interview excerpt from a 2022 International Women’s Day panel discussion, Soulaie shares her experience of bias, how she deals with it, and the valuable advice she would give her 10-year-old self.
Soulaie: To start off with, I was born without my left forearm. At the time that I was born there was a one in 100,000 chance of your child being born with the disability that I have. It wasn’t until last year that I actually found out what caused it – it was amniotic band syndrome.
I grew up in a really supportive home, so my parents didn’t actually know that I was going to be born with a disability. The doctors assumed that my parents already knew – which they didn’t – and they couldn’t give them answers as to why. So my parents, being the loving, beautiful people they are, took me away and said, ‘We’ll just raise her ‘normal’ – she can do anything she puts her mind to.’.
I was raised in a home where there was nothing I had to do differently. If the dishes needed to be done, they needed to be done, and it didn’t matter whether my sister had two hands and I had one, there were no excuses – I had to do everything the same. I was not raised to think that people would judge, because the people around me didn’t.
When I started school, I started to realise there were things like bullying. I wanted to play sport – netball. My Mum played netball and I wanted to play. My parents said, ‘Well, if she wants to play netball, she’s going to find out whether she can do it or not, so let her play.’. And I was actually really good at it because being born with a disability, I didn’t know any different!
But before they even saw me play, the other kids – or some of the parents of the other children – used to make comments to my Mum and my Dad about me going out to training to be on the team. They didn’t want me on their team because they thought that their children’s team wouldn’t win. Anyway, I was allowed to play, and I was actually really good at playing and I ended up being centre.
I played netball right through school and high school. I then went on to play for a club and the club wouldn’t actually let me try out – they put me straight in the C grade team. After watching me play four games of netball, they then put me in the A grade team and let me play wing attack and centre, which are some of the main bibs in the team.
I suffered a lot of mental health based on society’s views of what I was capable of doing. People would think growing up with a missing limb that the hardest things I would struggle with would be things that were physical – like tying my shoelaces. For me, it’s other people’s perceptions of what I am physically able to do. I got to a point where I had to go back to my roots, and I had to remember what I was taught – that I can do anything that I put my mind to.
I’ve always loved fitness, so I started weight training, which is what I need to do to build up muscle in my left arm – it deteriorates if I don’t consistently use it. And then one thing led to another and my personal trainer at the time said, ‘You should compete in a fitness bodybuilding competition.’. And I was like, ‘Oh, me in a pair of heels in a bikini on stage? I don’t think so!’. I grew up four-wheel driving and camping and that kind of thing, so this was completely out of my world.
I looked into it a bit more and thought, ‘Do you know what? There’s are lot more to the criteria than I thought!’. You get judged on your symmetry – and there wasn’t a lot of symmetry there for me, so I had to think outside the square and train my body differently. I had to train every single limb I had differently to build a form of symmetry. For me, it was never about winning, it was never about becoming a pro or anything like that – it was simply going, ‘I can do this and if I can mentally push myself to this point, anybody can – no matter what life throws at them.’.
It ended up creating quite a good career for me and I ran my own business for quite some time in the fitness industry and inspiring people living with a disability to reach their goals and step outside their comfort zones. So yes, I did go on stage, and they offered me a handicap last minute because they didn’t have a category for someone missing a limb. I was a little bit sneaky and had looked at the criteria they mark on, and I knew if I wasn’t symmetrical in my upper body, I would lose points. But you get marked on your stage presence, your confidence, and your charisma – so where I was lacking in some, I made sure I was 100 per cent in others!
Out of 35 girls, I placed Top 5 and qualified for nationals. I was able to grab the microphone and do a little talk to all of the other people. There was a man sitting in the crowd in a wheelchair and he was clapping and bawling his eyes out. He spoke to me later and he was so proud that I did that for people living with a disability and that I got up and showed them that it doesn’t matter what the external world thinks, you can do whatever you put your mind to. So yeah, that was my story! I didn’t go and compete at nationals – I decided to have a pizza and hang up my heels and my job was done.
Soulaie: I would take my dog. Animals don’t judge – they love you unconditionally and you know that no matter what you look like, they love you!
Soulaie: I constantly love to set myself physical challenges. Since bodybuilding, I have been looking for something else. I hike quite a lot and I try to do five kilometres every day before I start work – I love hiking! I had a friend who has passed away, but we were going to do Kokoda together, so that could potentially be something I look at. I’d like to do rock climbing at a different level than just socially, so that could be something.
My main goals over the next five to 10 years? My partner and I are both really strong vegans, and we love animals and looking after them and rescuing them, so my major goal is to get a property with a little hobby farm where we can educate people about animals and take care of them and that be our sort of family life.
Soulaie: Well, I wasn’t prepared for the extra judgement. Bless my parents’ cotton socks, they were amazing and taught me I could do anything possible – but I was not prepared for the external judgement that would come.
I would tell myself that it will be hard and there will be judgement. Remember to believe in yourself and believe what you were taught. You can do anything possible and by believing in yourself you will inspire yourself and the people around you.
Until recently, Soulaie was a member of the Kinora team at My Plan Manager (she’s still working with us, but in another area of our business!). She told attendees at the International Women's Day panel discussion that ‘Kinora is a great place where there is no judgement. You are there no matter what disability you have or if you don’t have a disability, but you are supporting someone with a disability – it’s a place where everybody fits!’. Jump on to www.kinora.com.au to find out for yourself.
In the lead up to World Down Syndrome Day on 21 March, we spoke with Sheryl, a mother of seven, including sons Joseph, 21, and Ben, 19, who live with Down Syndrome.
Joseph and Ben’s National Disability Insurance Scheme (NDIS) funding is plan managed by My Plan Manager and we asked Sheryl about their journey through the NDIS and their plans for the future.
We also invited her to share some of her ‘proud Mum’ moments, her advice to other parents of children with disability, and her thoughts on what inclusion really means.
Sheryl: My husband and I have seven children and Joseph and Ben are the youngest. Our eldest daughter is 33 in a couple of weeks, and Ben, the youngest, is 19. It’s been good for Joseph and Ben to be part of a big family because, growing up, they’ve had to be flexible and have always been part of everything we’ve done. We used to go camping for holidays and their brothers and sisters have always included Joseph and Ben in their lives and friendships.
Sheryl: As pre-schoolers there were supports available, and fairly soon after Joseph and Ben were born, we were involved with the Down Syndrome Society’s early intervention groups - which were fantastic. We also accessed supports through Disability SA, which, back in those days, was called the Intellectual Disability Services Council.
We were able to access speech therapy, physiotherapy, and occupational therapy, which was very good in the early years, but then we found that once the boys were at school, those services weren’t readily available, and didn’t really exist. At one stage we received funding for speech therapy from Foundation 21 (a non-profit organisation which seeks to enhance and support existing services and to raise the public’s awareness of the positive contributions of individuals with Down Syndrome), and later we tried to afford therapy through the Enhanced Primary Care Plan (Medicare) but we still had to pay the gap. It made it hard to get support, particularly if we didn’t have the finances.
Once the NDIS came in, it was fantastic to be able to access supports again, and then to find support workers for Joseph and Ben as they grew older. It’s been tremendous really – they get all this extra help that’s enabled them to make much faster progress and develop in a lot of areas. It takes a load off us, particularly as our other children have grown up, left home, and lead busy lives.
The NDIS has created a different kind of stress in coordinating everything and keeping track of appointments – however, compared to what it was like before the NDIS, this is a big positive. The good thing is, Joseph and Ben can often work together with one support worker, even though they’re very different.
Sheryl: When we were agency managed it restricted which providers we could use, and we couldn’t use providers that weren’t NDIS-registered. We still find we have to check over invoices, but we don’t actually pay them, and to know that someone else is keeping an eye on things too is really helpful.
Sheryl: One of the big things with Down Syndrome is it seems to affect so many areas of Joseph and Ben’s lives. There are a lot of conditions that are more common for those living with Down Syndrome, like hypothyroidism, diabetes, hearing, sight and dental issues and low muscle tone. Ben was born with a heart condition and has had open heart surgery three times since he was 10 weeks old. That is where you need support!
Apart from having the support of immediate family, we are part of a local church group where people have turned up with meals during times when we've been at the hospital, and there are people we can ring up, talk to, and pray with – having that support is fantastic. We’ve been able to meet other parents, share our story and hear theirs through early intervention groups, and they may not be exactly the same, but there’s similarity and understanding.
Sheryl: We were given some advice earlier in the picture to follow mainstream education. Funnily enough, in the school system the teachers were fantastic, but disability coordinators could be negative and unhelpful, and had very low expectations. I learned from a workshop I attended that a local school had to accept Joseph and Ben, whereas the principal gave the impression that they had to reach a certain standard of learning before they could attend. If I hadn’t gone to that workshop, I wouldn’t have known this, and I would have gone down the route of special education. That’s why it’s important to have a good network and to get the right information.
There was a time when Joseph - who has an element of autism as well as Down Syndrome - had behavioural issues, and things weren’t looking great for him in primary school. We applied for a special school and prayed to God to tell us what to do, but at the time there were no vacancies, so we took that as a sign and stuck to mainstream education. It was such a great joy to see him graduate from Year 12 and even get a graduation medal for academic excellence in modified SACE. There were times over the years when things would go badly, and he would get suspended, and public opinion of putting him into mainstream education was against us - but we're so glad we persisted.
Ben is very different, but also had some bumps in the road when he was in Year 7. However, he went right through mainstream high school, got his modified SACE, made some good friends, and really enjoyed it.
Sheryl: There is a stereotype that people with Down Syndrome are always happy. Joseph and Ben get angry and sad, just like anyone else, but they do have a joy in life that’s refreshing. They’re more prepared to enjoy life and what a lot of people don’t realise is they’re not sorry for themselves. They don’t ‘suffer with’ Down Syndrome, and they don’t see it as a hindrance.
There is a concept that having students with Down Syndrome in a classroom can have a negative effect on other students, but over the years parents have told me they’re so glad their child had Joseph or Ben in their class because they learnt a lot and were less afraid when they saw adults with Down Syndrome.
Sheryl: Don’t compare yourself or your children to other people. I would look at other young people with Down Syndrome and see how they were succeeding, only to find out that their parents were looking and comparing too.
Each person is different and has different skills, strengths, and weaknesses.
Sheryl: Joseph has a job working at an aged care facility and we are very proud. He’s working 15 hours a week manning the kitchen, washing dishes, and setting trays. Prior to this, he was doing junk mail deliveries – or catalogue deliveries as he prefers to call it. It’s a lot of work for little money, but it trained him to be persistent and organised. He also volunteered delivering food at Meals on Wheels, where his support worker was the driver, which gave him good social experience to set him up for his current job.
Joseph and Ben are very different, and whilst Joseph wants to stay at home, Ben wants to move out eventually. We are blessed to have two blocks of land and would like to use the block next door to build them a house each. We’ve always wanted to prepare for their future to make sure they are stable and have supports in place and would like to see them both working and married and living independently in the community.
Sheryl: A big ‘proud Mum’ moment was when Joseph got a medal at school for academic excellence. There was another time when they both did swimming lessons and indoor rowing, and Joseph got a trophy for his improvement in those areas. Joseph was terrified of water, and it took many years of persistence to get him to swim. As a parent, you sometimes think ‘Why am I putting my kids through this?’, but it was well worth persisting and now it’s something he can do and enjoy.
It was the same with bike riding - he couldn’t cope with normal training wheels, so we went through a process of using a tricycle, then big stabilisers, then we went to no pedals, until finally he could ride a bike. That was a very big moment too.
Ben was really terrified of medical procedures after having open heart surgery, and because he was going to have to have another operation at 13, we spent a year working with an occupational therapist to help him cope. Now he is no longer scared, and he can do his own injections for his diabetes. We spent a long time overcoming that.
Sheryl: They have a speech therapist. Joseph is very good with articulation and Ben has struggled a lot with his speech - he has mild to moderate hearing loss and has had to work at his language skills. We also access occupational therapy, counselling, exercise physiology, School Leaver Employment Supports program for Ben and Disability Employment Services for Joseph.
We have very good support workers who work with the boys on their physical fitness and encourage them to be active. They’re at the gym three times a week, plus they do swimming, are in a church basketball team, and have done junk mail deliveries. Mentoring All Men is a great support that encourages them to do physical activity to improve muscle tone and manage Ben’s diabetes.
Sheryl: Look into the future and think about the big goals that you want your children to achieve, then work backwards and create a plan from that. We want Joseph and Ben to live independently and need less support, so we have always kept that goal in mind and worked towards it.
Sheryl: To enjoy the small things and really celebrate the little successes.
Sheryl: Inclusion means being given equal opportunity and being allowed to do things alongside, and with, people in the community. When Joseph and Ben first wanted to play basketball, people would tell them to join a disability team - but they wanted to play with their friends and the people they knew. Inclusion is being able to be part of a local community, a local club, a local school.
I’ve had to fight to have that inclusion in some places more than others, and there have been times where they weren’t considered for something because they have Down Syndrome.
When Joseph left school, he wanted to keep doing woodwork and the first men’s shed we approached didn’t accept him. They just couldn’t envisage that he was capable of doing the activities there. Then, we found another men’s shed further away that was more than happy to have him there. The silver lining of this is you find incredible, accepting people in the community.
To learn more about Joseph and Ben, and how My Plan Manager is helping them to manage their NDIS plans, click here to watch a quick video: https://www.youtube.com/watch?v=vgYVXiKA7YI.
By Chris
This article is part of My Plan Manager's guest blogger series.
A note from My Plan Manager: The tips and information in this blog are taken from personal experience and may not mirror your own National Disability Insurance Scheme (NDIS) journey. If you haven’t yet read ‘Need help with the National Disability Insurance Scheme (NDIS)? Here’s where to get it (starting at pre-access)’, turn around and start there!
Once you’ve read that, come back to this article where Chris shares his NDIS tips from personal experience.
The process of becoming a participant in the NDIS can begin with a verbal access request, where a person with disability, their family member or guardian calls the National Disability Insurance Agency (NDIA) and asks to apply. Another option to apply for the NDIS is to submit an access request form. Both of these require supporting evidence from a treating professional.
Note: We recognise that everyone’s experience with the NDIS is different. However, you can contact a Local Area Coordinator (LAC) free-of-charge to help you apply as the first step when you are thinking about requesting access to the NDIS.
Once done, contact a disability advocacy organisation for support. Most advocacy organisations will help to unpack the terminology and jargon that is often used in the disability sector and having someone by your side who is familiar with those terms and phases really helps. Most advocacy organisations will do this for free.
If your application to access the NDIS is approved, the first thing to do is to go to a pre-planning meeting that’s usually held with a Local Area Coordinator – or LAC. LACs help NDIS participants to develop, review and implement their plans. During the 90-minute catch-up, the LAC will gather information and work with you to determine what to put in your plan.
You can ask your current providers to help you prepare for this meeting, and they can even join your pre-planning call with your LAC.
The process is challenging, but with patience and perseverance, you can make it through the experience.
If your application to access the NDIS is turned down, don’t panic. This decision can be challenged through a number of review pathways that you can find at the end of this article.
Once your eligibility is established, the NDIA will contact you to set up a planning meeting. During this meeting they will ask a series of questions about your experiences in regard to your disabilities, what disabilities you are diagnosed with and what services you think you will need. There may come a point in this meeting where they ask you to justify your needs, so it is a good idea to have someone from the organisation that helped you with the pre-planning meeting there with you for support.
It is always good to have someone else with you to take notes when you speak to the NDIA. If you’re not able to have a third person with you then politely tell the NDIA that you can’t talk at the moment and arrange a time when you can have someone else take part in the conversation. Do not take no for an answer to this request as they cannot force you to talk to them.
After the meeting, the NDIA will present you with your NDIS plan. If you’re happy with it, that’s great. If not, you have 90 days to request a review. Often people aren’t aware of the 90-day limit, so keep it in mind, because you have a time limit to challenge the NDIA’s decision. If you can’t resolve the matter by way of a review, this is where legal aid and/or the Administrative Appeals Tribunal come in. These are both free services and both have specialist teams that deal with matters relating to the NDIA.
Both options have resulted in positive outcomes for me, so I leave the choice to you. Just remember, these people are on your side, so always be polite with them.
You can find more information about getting a decision from the NDIA reviewed here: The lifecycle of an NDIS plan
This month on Kinora, our online community for people with disability, their supporters and service providers, we’re exploring eligibility and access to the NDIS. If you have questions about applying for the NDIS or this pre-planning phase, log on to Kinora to connect with a coach who can point you in the right direction.
Hi I’m Chris. I’m a 44 year old Autistic person. Originally from California, I ran away to Australia as soon as I could. Raised in the country, life wasn't easy with an invisible neurological difference, especially when that difference wasn't even widely known about. On top of that I didn’t even get a diagnosis until I was 39 years old.
