I happened to find a good support coordinator service eventually after the second attempt over a span of two or three months in Melbourne. But I had to convince NDIS first that I needed I support coordinator and I couldn't handle it myself. It should have been automatically provided to me if I had autism. So the process should be easier and I should have been offered support coordinator by being asked: "Do you need help in finding all the services for your NDIS Plan or are you ok by your self or have help already?"
During the NDIS planning process, I was not told about the NDIS client app. I think the NDI's client app and the web portal should be the most important thing. A person sets up with the NDIS LAC (local area coordinator) in order to visually guide the person through finding all the supports as part of the NDIS plan but having slots for the different services and then being able to use the NDIS provided search. With well reviewed & well rated services in the area. The service agreement signing for each provider is a bit complex sometimes and requires a lot of reading. The service agreement should be much simpler through the NDIS app rather than through each individual provider. The NDIS app should be modernized or integrated into the new MyGov app which is really easy to use. There should be a rating system for every provider, I need to provide a listed within the NDIS part of MyGov app well you can Review the signed service agreement with each provider, have a translated in any language, be able to write and review / complement
or complain for each provider and for the provider to have a chance to respond to the review / complement
or complain (and overtime through this process weed out the bad apples), also have the ability to see all the financial aspects of the NDIS plan in there with graphs and all that stuff that's in the NDIS app at the moment. This way you don't have to have multiple apps from each provider to deal with this. Another cool feature would be to be able to have a chat service between each provider including the cleaning services, and for each provider, there should be a really easy to use booking system that can be linked to my phone calendar.
This is a question that's really hard to answer because I'm in the NDIS plan and system and benefiting from it. So I don't know what kind of illness or disability is not classed as something that's within the testing parameters of NDIS. I'm autistic so I'm not really comprehending this question. I would say clinical depression and a general anxiety disorder if it's chronic. It needs additional supports such as art therapy as an add-on to the general clinical psychology if the person wants it and it is beneficial.
One thing up I'm upset about as an autistic person is that animal assisted therapy such as equine therapy for autistic people has been removed from the NDIS plan. I am autistic stage 2 and according to research being cost to animals is highly beneficial for me. Not just horses or dogs but all kinds of animals. I think it's also healing for people with clinical depression and other disabilities. States and territories aren't doing enough to facilitate people with mental illness to be able to easily and affordably access being close to animals in the local zoos and other places with animals that you can come close to such as dogs and horses and other animals. I think the state should along with NDIS put together access to animal assisted therapy as a form of medicine because it is deeply healing to the heart to be around animals, but some people, especially people living alone like myself in low cost accommodation under $300 a week cannot afford to have an animal in the house and are often heavily affected with their mental illness so they can't go to nature to often. But if they had a control environment with access to animals close by, it may be very healing. Another example of animal assisted therapy is being able to access some of the animals in the aquarium as well as other reserves and nature places such as werribee zoo, Healesville sanctuary snd Melbourne zoo and nocturnal sanctuary etc etc. Other problem is, for example for me to access animal assisted therapy related to horses. I cannot ride them because I am about 90 kilos and they have this super extreme regulation that a person has to be under 80 kg to be able to ride a horse which is silly because you could have a larger horses that could handle heavier person available for these providers. But also simple interaction with a trained dog for an hour would be so beneficial or with another type of animal. Some animals are really beneficial to autistic people for example.
If I'm on the healthcare card I should be able to have a discount to access affordably close up animal encounters for an hour or half an hour.
Also, social interaction practice groups should be formed for people with autism to meet other autistic people and learn some of the social cues they struggle with in a practical settings, perhaps with props and real life staged environments with a guide.
Also, people with clinical depression and anxiety should have access to group sessions that are low cost and help with mindfulness and other techniques in a group environment.
I think all of these supports should be listed on some general NDIS or mental health assistance or therapy website search engine kind of sites so you can find all of these a hidden things all over the place that I really had to find at the moment, even in Google. So some people can find these things and know people that know people but others struggle to find things and they will probably very much enjoy and benefit from such sessions in therapy.
The other problem that I've noticed is that when I'm trying to complete the whole picture of the supports for my autism, I'm often told that certain parts of my disability needs cannot be met by the NDIS and they leave it at that. For example, affordable housing for someone on disability pension or low income that are on NDIS, although NDIS usually doesn't get involved in affordable housing. They could help connect the client to all the necessary other departments or supports or give him a full instruction list or assist connect them to the necessary departments to save on time. It's similar with other help that I am not aware of, for example.
And even my support coordinator doesn't know everything about everything. So often I had to Google myself things that I needed as part of the NDI's plan. That was hard for the support coordinate to to find. So there needs to be better search capability and filtering capability in being able to find the right supports. So the whole process takes a lot quicker both for finding other areas of support that needs to complete my disability support picture and all the supports that NDIS provides and there should be clear demarcation between what in the ndis offers and what they don't during the planning stage so that there is no ambiguity or confusion for both my support coordinator, the providers and the plan manager. Currently there's a lot of ambiguity that has to be checked with a ton of questions each time there's an uncertainty on what NDIS covers and what they don't. Everyone in the whole cycle needs to be well aware as to what NDIS can cover and what it doesn't. At the moment it's very great and changes between each ndis region which is not fair for the whole system.
Also a regular perhaps every 3 months or every 6 months. A little survey via the NDIS app or the myGov app under a new NDI section. It could be provided as a voluntary option for NDIS clients to be able to provide feedback on improving services not necessarily affecting their providers, but in general what could be improved on the process better. That's a way of NDIS listening
This is a good question
For example, someone with autism spectrum disorder ASD stage 2 recent research from Tel Aviv University shows that autistic people feel pain more intensely therefore, there's build up of tension regularly that is hard to solve, but the result is constant muscle pain and difficulty sleeping. The NDIS plan does not allow for flexibility in terms of helping to relax the muscles and manage the pain.
This is an example of the fact that NDIS does not do enough research into each disability in terms of the current research and findings and adjusts the funding parameters accordingly to fit the current medical/ science research. The research about the feeling of pain, more intensely with autistic people. Of course it's a very recent finding but it will be good for NDIS to keep an eye out on peer-reviewed research.
There should be more funding. That's more flexible to be used, for example, for me to be able to manage the paint through a regular acupunctureist visit or a regular myotherapist once a month to handle the pain better and relieve some of the built up tension. The sessions can be unaffordable for low income earner or person on disability pension. But being able to access that on a regular basis would greatly reduce the intensity of pain and help reduce the buildup of tension.
And of course, access to animal assisted therapy would greatly help with people with autism on NDIS that are living alone and it shows in research that animal assisted therapy is very beneficial to autistic people, but I do not understand why it was removed from the funding. Because This sort of therapy is unaffordable for person with low income or on disability pension.
Also, as a person with autism stage to a lot of the NDIS paperwork and documents and the NDI's plan is too complex to understand, I prefer bullet points and simple tables tailored to Autistic people. So depending on your disability you would get a different looking in the NDIS plan to translate into the preferred layout for each disability. It is achievable if it's linked up and then it generates the necessary report details in the layout that each disability demands. Perhaps through the use of AI to reword yhings better for an AI assistant on the mygov section for ndis help explain and translate all the government forms and descriptions that often very verbose and difficult for me to understand.
There's also a discrepancy between each state and region of the NDIS. I hear some regions are more flexible and allow certain therapies and access to other help for autistic people that I cannot access in my Yarra region in Victoria. So the reasonable of the necessary changes between each region and provider.
If a parent is capable of making decisions for a disabled child in terms of what supports they want to access and how they should be given that because the parent knows best how their child should be looked after. And that varies between cultural and racial differences.
It is important that parents whatever language they speak, they understand very clearly and in very simple language. What supports they can access and how.
NDIS should help guide a parent in terms of what a child on NDIS can access to support them.
That should be communicated clearly at the start not later.
The parents should have access to the NDIS app or maybe perhaps a future section in the myGov app called NDIS. They should see everything clearly and the budget and what types of supports and so forth as I've explained in previous questions.
I think animal assisted therapy (As I've talked about earlier). If it is not going to be part of NDIS it should be subsidized by the states if it's an autistic child and the psychologist says it's going to be good for the child.
Yes, families with children with disabilities should be assisted and supported to navigate early childhood services if they ask for it or be given the chance to choose that option through a good support coordinator.
It is a very general question to ask what supports a family needs to help their children with disabilities to thrive. It should be case by case basis because children needs are very complex and not always to standard.
Sometimes it is difficult for parents to keep the children come when they listen on the phone or video conference when the initial NDIS LAC meets or support coordinator on the phone or video. It may be necessary for the NDIS LAC and if necessary, a third party support coordinator to come to the family home and do it in person to help parents to deal with looking after it, sometimes multiple children at the same time. That way it may be easier for both the NDIS LAC and if support coordinate out to know exactly what's needed until they have a look at the house. It's often better to understand the situation by visiting the family home.
I think it's important for NDIS to listen during planning to parents in person at their homes on what's needed and clearly explain on paper and verbally on what NDIS can assist with and what they can't and some supports in the community and the state government and federal other departments to help them connect to the services they offer that are outside of NDIS.
I think regular surveys sent to parents, perhaps once every quarter or every 6 months on how the plan is going and what could be improved would greatly help. NDIA to work out if things are working well on things need to be improved. So a regular feedback system. Also, on the future NDIS upgraded app or the section of NDIS inside the in myGov new app would have a good feedback system for each provider and the whole NDIS program in general so that regular feedback can be captured and services and delivery could be improved through aggregated surveys directly from the users of the NDIS program.
As I'm not a parent and I'm an NDIS adult client i cannot say 100% what works and what doesn't the best people to do that is parents of children with a disability.
Q: What needs to be done to ensure the markets serve the interests of people with disability, rather than the other way round?
Answer: That needs to be a rating system on weeding out the bad apples. Is writing system needs to be linked up to clients providing a reviews of each provider based on the fair review system and a chance for the provider to answer back just like Google reviews. Aggregation of such reviews over time should be viewed by NDIS and the top rated services should be listed at the top of a advanced and improved search engine within the NDIS website accessible to all clients, especially those who have just signed up to a new NDIS plan and need to find all the supports. I think the current search engine is hopeless and there's no way to browse based on the type of support and location. So it should be a full list to be able to browse and see everyone's NDIS provide a number because often the providers do not provide that number and it's hard to reference genuine NDIS providers from the fake ones. Transparency in NDIS provide a numbers should be paramount.
So this search engine should be visible and accessible to all clients either through the login so that it's kept secure from the public, maybe also through the NDIS app or the future section within the myGov app so that you can easily find best rated support rated by the clients that currently are on the service and then be able to apply directly in the NDIS app to that service with a period of cooling off or trial and then review and then acceptance and signing of a service agreement within the NDIS app or section called NDIS within the future section in myGov app with the support of a support coordinator. The support coordinator would be able to perhaps in that app and website to be able to propose maybe five choices that are well reviewed in the area and allow the client to get in touch with those providers and read their reviews by other clients and make their decisions more transparently and informed. because at the moment when I was finding providers some providers had fake reviews online not from clients or they promised a lot of things on the phone. But when I actually started using them, they weren't doing what they promised or they didn't know anything about autism but they claim they knew about autism.
The other problem is that at the moment each provider for each type of service delivery does not have a certification program based on illness. So for example I was looking for a support worker who has Autism experience and or training. I asked a few support work agencies and some said they did but when I started with that support worker it turned out they could not handle me. Another example is my first support coordinator agency promised at the support coordinator had an experience in autism but they were very bad at handling me. But then I found another support agency and they had experienced stuff with training in autism and experience with clients with autism and they handled me perfectly. So there is clearly a problem in these agencies not training their staff in proper service delivery and promising a lot of things on paper to NDIS and to the clients but not actually delivering what they promise. Each agency should be required to do add-on training for each staff member, for example, in support work for the particular disability so that they are familiar with the ins and outs of the illness and can provide a better service delivery all around. That training should be subsidized by the NDIS to enhance and improve and speed up service delivery, thus reducing unnecessary cost loss through use of wrong providers that are not delivering properly.
Q: What options would help when supports and services are not available in your region?
Answer: Perhaps remote assistance services or providers that are not part of the NDIS but our local and an easy process to sign up a new provider in the area once a non NDIS provider is selected.
Q: What information do you need to understand what good service looks like?
Answer: I need to see other clients reviewing that service and I need to see reviews with the first name only of actual clients who have reviewed each service. Would help me greatly in deciding what service provider to choose. these reviews with let's say a five-star rating would be displayed at the top. But the problem arises is how do you stop providers from forcing a good review from a client? It needs to be set up in such a way as to encourage a client to provide a review without any repercussions and anonymously to NDIS through the NDIS app or the future section called NDIS in myGov that I proposed.
Q: How could the pricing structure be redesigned to reward outcomes rather than the volume of transactions? A better reviewed service provider would be paid better than the list reviewed service provider. This would eventually weed out all provide us that aren't doing well enough in good service delivery. Obviously you wouldn't be people with just five stars. Perhaps four stars as well would get the best pay and then maybe three stars and two stars would get a lot less and one star would be audited a lot more often and weeded out if there are no good. I know it's cruel but it has to be done to allow the better providers to prosper and the ones that have bad practices to eventually disappear from the market.
Q: What would attract and keep workers who have the right skills, value and attitudes?
Answer: Additional training modules provided by NDIS for each disability allowing for the provider to promote specialization
How should you, your providers and the NDIA keep track of how your supports help you achieve goals or outcomes?
As an autistic person, I'm currently a confused as to achieving goals or outcomes because they make me feel like if I don't achieve them there's something wrong or if I achieve them I'm going to lose my supports. So I am afraid to say how the goals are achieving or they are partially achieving my outcomes. I think the word goals isn't the right word to use in my opinion. I think it's more like achieving support baseline or something like that. Definitely not goals because once you reach the goal it makes me feel like I'm going to lose the supports. So I'm afraid to say if I've achieved them. Perhaps add explanation that achieving NDIS goals doesn't mean you'll lose supports.
How should governments and agencies be monitored to make sure they do what they say they will to support you? Who should perform this monitoring role?
There should be an independent ombudsman for NDIS clients to be able to independently review any decision by NDIS or service delivery by NDIS providers. This should be an independent agency that does not answer to the government but overseas the government in NDIS in NDIS delivery. This type of mechanism works well in other parts of government such as e-safety commissioner for example.
How should we measure the impact and benefits of the NDIS for the broader Australian community and the economy? How should this information be shared?
Clients should be able to leave stories and reviews that they want to tick as want to be publicly visible with their first name for example or anonymous name. Also, a satisfaction index based on all the client reviews should be publicly displayed as an aggregated sets of reports yearly for the public to view how the NDIS is doing. This includes in the surveys that are sent to each client to include the satisfaction of the whole program and for them to share what it has done to their lives and how it's impacted their lives. For example, after I have been using NDIS for 1 year, I've been able to accomplish things that I would have never been able to such as starting again doing my artworks which I stopped for 11 years now and I had my first exhibition with the help of my support worker which I would have been afraid to do in the past or not able to because of my disability not being looked after. And the cleaning this and health results of my life. And being able to live a normal life. These aspects are results should be important and should be celebrated by NDIS and the providers. So if there's good reviews then both the client and NDIS and the providers should celebrate it if they want to do that.
How can we build a system where the NDIS keeps improving based on evidence? This is a very important aspect which I mentioned in previous questions. NDIS needs to have a research center set up that monitors current scientific papers and research in every disability including autism spectrum disorder and monitor the latest findings and scientific discoveries and medical treatments and supports that are not currently available. This should be made publicly visible so that clients can learn of these things. Also, this research center should look at ways of saving cost, both for the providers and for NDIS and the clients.
For example, currently each NDIS provider has to pay a lot of money for different databases and IT systems and all sorts of things. But if NDIS had larger purchasing contracts and be able to provide lower discounted IT equipment and NDIS back of office database app for the agency and other lower cost service delivery tools, this could bring down the price of service delivery for the clients.
This is very clearly a done in charity organizations they have ConnectingUp which provides discounted applications and hardware for charities at discounted rates.
There should be technology and other companies partnering with NDIS that offer lower cost technology and service delivery equipment and materials, including even perishables that are used in service delivery at lower cost because of a larger contracts that NDIS can secure for the providers. That way service delivery would be further reduced in cost, therefore reducing the total cost of service delivery for NDIS. Also the cost of compliance can add to the cost.
For example my Occultational Therapy seems excessively expensive with extra charges. Why is an OT even necessary so much? That seems quite unnecessary, but perhaps they could reduce their costs by having a lower cost of service delivery through subsidized technology and perishables.
Also in terms of scientific and medical research NDIS research center could also partner with universities and hospitals in reducing the cost of service delivery through new approaches to helping more effectively help people with a disability. And also, for example, like I said in previous question, that Tel Aviv University discovered that autistic people feel pain more intensely so helping them to manage pain through acupuncture through regular deep tissue massage and other ways to manage the higher pain threshold they feel and tension buildup because of tunnel thinking episodes. I don't know what it's called.
The NDIS research center should a collaborate with a similar agencies and universities around the world to discover new extra services that may be needed or refined the NDIS plans and if they find a new thing that could help manage person's disability better, it should be advised to clients that it's available now as part of their current plan. Often the problem is that Ndis clients find out of supports that could the system but it's not covered under the NDIS plan because NDIS isn't aware of the benefits of it which could reduce the use of other services they access.
Q: How can the scheme build goals that nurture connections to local community?
A: This is the hard one because we live in a digital age and a lot of people with disability live alone like me with autism. But I think a better interaction with community services and NDIS would be great. For example, the NDIS search engine on the NDIS website could also include community services that are outside of the NDIS plan but are listed there and clearly marked as community services such as community centers which I have been able to use to sign up to some art classes to get myself started. They are often low cost and help to connect with others. But of course it hasn't replaced my art therapy which is very focused and helps with my autism.
Q: How can you use your funding to help you connect with friends and family, learn new skills or try new things? What is keeping you from doing that now?
A: For example, virtual reality goggles specifically for treating mental illness and autism are available, but they are not necessarily easily accessible or are not covered by the NDIS but could help me in dealing with increased levels of stress and panic that I experience and I need a way to go into a safety zone.
The other thing that NDIS denies now is weighted blankets and weighted toys for adults. I understand that children with a disability on NDIS are in danger of getting affected by weighted blankets and weighted toys. But adults are different story and would greatly benefit if they are autistic with weighted blankets and weighted toys which aren't cheap there about one or $200 each I think so I'll have to do that out of my own pocket.
I think NDIS needs to invest in affordable housing for people with disabilities to live more independent lives. I think having your own place to live which I currently am at risk of losing and I can't find a place on the $300 that's affordable under a disability pension. Having affordable housing specifically for someone with autism but but without the need of living with other autistic people with a carer would be great for those that can cope living on their own with extra supports. But the problem is accessing affordable housing. I think long-term outcomes all relate to safe shelter.
Q: How can you use your funding to help you prepare for, join, or stay in employment? What needs to changes to make this work better?
As a person with autism spectrum disorder on stage 2, particularly with my problems is my mind shuts down after one or two hours of mental effort, especially in the stressful work environment in Australia its impossible to find and maintain a job. There is no employer out there who can accommodate stress free workplace for 1-2 hours a day and some days I cant at all. Cant run any business like that. But for example, i have a talent in making art, inventing things and coming up with brilliant ideas and doing artistic things and if NDIS can help cover tutors to help me iron my artistic and engineering skills I could be useful to some businesses if they understood the needs and limitations I have and stress free environment at home working remotely or assist me in running a home business casually as an artist or inventor (because the structured learning program in a university or tafe does not work, Ive tried and it was extremely difficult as there is no mental health support and its not designed for learning). I would like to learn how to design AI systems and how to be a better fine artist in making sculptures and paintings and how to use different kinds of visual software. And then assist me in connecting with employers who run NDIS supported programs in helping me to do a little bit of extra income and be productive while still getting supports from disability pension and an NDIS as a supplement. But Australia has very little programs for people with autism and because autism is complex, each person has different needs. I know that I could not sustain more than a few hours of concentration and then my brain shuts down and I have to rest for the rest of the day as I get stressed. And some days I'm not able to do any work. But if I had someone come to my place and teach me about a particular subject like a tutor, I could improve my skills in certain areas. And then employment support specifically designed for autistic people and employers that are willing to employ someone for a few hours a day. Also have to be remotely because I don't handle large groups too well anymore. So it's probably not easily doable, but I could accomplish a lot if I could learn how to manipulate AI or be a better fine artist and do art casually as extra income. I'm trying to do that a little bit with the help of support worker but it's not easy and I have to take a lot of breaks. So I kind of really maintain the proper work. But this question will definitely apply to some disabilities that aren't related to mental health but are related to physical limitations. As you can see from my responses from the questions I flooded you guys with data that's coming straight out of my mind when it comes to ideas. But basic skills in life I struggle with and I need supports with. But when it comes to the topic of technology or art, I have a very narrow ability being a high functioning autistic but with stage 2 issue with interpretation, home care and stress and anxiety. I hope some ideas here can make some sense. All I can say is the education system is not tailored for autistic people.
Q: What skills and knowledge do you need from someone who helps you navigate the system?
I need to be able to find the right supports as part of my NDIS plan, so support coordinator needs to know and have a full database of all the providers in the area and who's the best reviewed and I need to be able to see it as well to to pick this stuff together as I've said in previous questions. for example OnSide has been really good at finding good service providers and they keep a list and databases of information about that. Not all support coordinators are that good so knowledge sharing between providers should be something that NDI should facilitate on an online database for providers. By sharing knowledge between providers, it will be easier for each provider to provide service delivery and quicker and cheaper for NDIS in the long run. Sharing knowledge is the most powerful thing. Those service providers who are willing to share knowledge and NDIS willing to share knowledge with service providers will help a lot and that should be in the form of a knowledge base database that can be added. Kind of like a Wikipedia of information for internal use (that each provider can contribute to and NDIA can contribute to to share internal information and enhance the whole NDIS service delivery across Australia ) to help NDIS clients find their supports and a resolve questions and issues.
Q: What (people, systems or processes) would make it easier for you to make informed choices, manage your funding and pay your providers?
As I've said, it's important to have a really good search engine with a rating system that's linked to each clients internal review system with a five-star rating on each provider they have so that it aggregates into that search engine and top providers are listed at the top and fight over the best service within the affordability of their service delivery. I also suggested something like ConnectingUp thats offered to charities to service providers so that they can access cheaper technology and equipment so that they can offer cheaper service delivery to clients and to NDIS. Often back of office costs are the biggest issue in maintaining good service delivery to clients. That includes affordable and necessary cyber security defenses to protect the data that they access.
As I have said the best thing is for many people on different disabilities such as autism for things to be kept very simple for us. So I think the myGov app if it was fitted out with all the features and options that the current NDIS app has and more, it would be easier to manage everything government related in one app and the related myGov website all in one place both for the service providers, NDIA and carers and NDIS clients. I also think each city should have an NDIS physical office so that people that are not good at technology can visit and get assistance in doing reviews or NDIS planning in person.
Q: What would make it easier to understand how your funding should or should not be used?
Well, I don't understand all the financial jogging stuff because my autism makes it difficult to understand a lot of gray accounting stuff. I need some simple graphs and point form information on what's available and what's not available and how it should be divided. Because my support coordinator had to do this sort of mathematics for me to understand all the data that NDIS app displays. For example, he had to work out. What is the budget for support work and divide that up for each week? On how many hours I can book a support work agency. These are the sort of practical and simplified calculation details based on the provider.. So in the updated NDIS app or NDIS section in my graph, what you need is the ability to add providers to the budget and be able to apportion how many sessions or hours per week you want to commit to for the provider and how it affects the whole years budget. That way it'll remove a lot of the calculation time that support workers waste time on and clients waste time on working out. So for example I have let's say $5,000 for support work for the year: I could select a provider to add to the plan in the new updated app and then have a display. How many hours I can use up and adjust that up or down so that I can have more funds for another provider if I need it more for example. Also, the ability to know exactly what types of services I can access within the budget by being able to click + of the budget and add approved services from a total list of providers within Melbourne but ootimise the closest and best regiewed by clients. Talking to Microsoft Apple and Google on what they reckon should be ways of handling this because I think they will be very supportive of this and they have a lot of artificial intelligence tools that could assist such as DeepMind at Google.
How should service navigation be structured for those who need to access multiple service systems so that they work together?
I think it's all should be made simple it under one app tailored to each disability. For example my autism. When ndis plan is added I then can see it in a preferred layout as well so I can choose customizations on how I see everything and how I add stuff to my NDIS plan. I think you would be easier to add the whole NDIS platform into myGov new app that was created and the mygov new website and be able to keep all government services under the one set of apps and have all full features like now and more. With intelligent AI assistant along the way.
Q: What would help you to make decisions about where, how and with whom you live?
A: The proposed NDIS search engine that I mentioned in previous questions should also make it possible to see the entire countries providers based on location so that I can plan perhaps to move to another state or region or city or town and see what kind of services they have. This could perhaps motivate me to move to a smaller town where it's less stressful for me and no in advance. What type of providers are there and how well reviewed they are (based on my suggestion for a client focused five star rating system on the search engine of service providers within NDIS website).
NDIS website is very complex for many people with a disability on NDIS including people with autism, so they should be an AI chat assistant that aggregates all the data within the whole website and assists us in having a conversational style. Chat to work out all the questions we have including location-based questions about specific providers ETC ETC. NDIS could gather a lot of specifications of each provider and input that into the search engine to allow for the AI chatbot to assist with answering a lot of questions that could ease service delivery for service providers and thus reduce costs
Q: What are the features of living with people or living on your own that are important to you?
I am stage 2 autism spectrum disorder person. But with supports from a support worker and OT I have enough support to be self-sufficient. But NDIS does not provide subsidized housing specifically for autistic people in quiet areas that are self-managed. They only provide specialist autistic shed homes with a support worker. That's all in good but I don't feel like it's the safest place for me as I'm a very private person and I would like some measure of independence so that if I invite friends I don't have to be in a shared home which is not the best If I'm more independent. I am currently looking for a rental on the $300 because I'm on disability pension of $575 per week. That's $120 for food + $60 for petrol for car + $300 or less for rent = about 90 days left for utilities and other medical expenses which is unrealistic. This puts pressure on me as an autistic person and stresses me a lot. I'm facing having to have to move out in the coming months by 1 December this year. Victorian public housing register I'm reduced it on but they have said I will most likely have to wait up to 11 years. The problem with the housing register is that they prioritize people with a physical disability, but people with a mental disability on NDIS are not prioritized and treated equally as people with physical disability. I would like NDIS to work with each state housing register and work on building supply for affordable housing or social housing that can be self-sufficient. To the greatly improve my quality of living and less stress which aggravates my disability greatly.
Q: What information, services or support do you need to feel safe and well supported in your home?
I would like to be able to have NDIS assist me in purchasing a security system if I'm in a dangerous area that I don't feel safe such as CCTV and flood lights outside. Also, some regular cyber security awareness training for those who need it on disability would be good as part of the NDIS funding to keep them safe online. People with some disabilities love to use online services and apps like social media, but they are often ill equipped to handle scammers. I have a service security background before I developed my disability. I think there's a lot of people with the disability that could volunteer or assist other people with a disability on making them cyber aware.
Q: How should the NDIA make decisions about reasonable and necessary housing and living supports, so that decisions are fair and much less stressful? I think people with autism spectrum disorder should be given the option to be provided with affordable housing that they can live on their own with supports instead of living in shared home with a support worker. Im one of them. I would find it very stressful living with other people with autism if they are more severe levels pf autism or some mix of Autism.
Q: How can housing and living supply responses be encouraged to be more innovative and aligned with participant needs? NDIS should assist me through support workers that are trained or specialist services that can help me find affordable housing because at the moment I'm left by myself stage to autism to try and find affordable housing when there is over 50 people at inspections and I'm scouring through all the different apps and attending a lot of stuff and it's throwing my whole mind into a spin and stressing me a lot out. And I was told by NDIS support coordinator that They are unable to assist me with helping me to find affordable housing that's me living on my own with assisted supports from NDIS. But I think there's room to improve for NDIS to perhaps even fund their own housing supply for NDIS clients to have a safe place. And not necessarily in city centers. Because at the moment all of the public housing or NRAS is in city cbd rather than outer suburbs where its less congested and safe and less crime which is important for autistic clients.
I feel alone when none of support services in NDIS is able to assist me. My support worker is assisting me a little bit during the sessions but he's not familiar with the housing industry. I would like assistance in buying affordable home and NDIS assist me with paying off the house.
Q: How can the regulation of providers and workers be used to improve the quality of services and supports?
I think NDIS needs to do in person inspections at each service provider in the country. They should also make decisions based on client surveys and reviews and a five-star rating system as I've mentioned in the previous questions. Also, I think each worker inside each service provider needs to have the relevant training for the relevant disability except of course cleaning services, but they need to be aware of certain aspects. So the right training for the right worker is so important because at the moment it's not policed and people make stuff up that they can do this or they can do that but they need to be properly trained and NDIA needs to quality check to make sure that training is through certified providers like tafes or online training providers. And the person needs to prove that they still retain that knowledge by doing yearly shorter retests to make sure that they are still familiar with the procedures and skills they have learned through specific training for each disability. I think that way will enhance service delivery greatly. NDIA should provide funding to each service provider to comply with training requirements so that it's not too costly for them to do all the training that is necessary to be an effective service provider For example, for autistic clients.
Q: How can the NDIS build your capacity and natural safeguards to support you to be safe and get good outcomes?
I don't understand this question. I think it's repetitive to other questions raised earlier. But I'll try and interpret what this means because I struggle with interpretation. One of the key important basic needs of every human is access to healthy food and clean water, access to the internet, access to affordable housing, access to a community. When any of those things are not met properly, a person with a disability can often struggle to access these things or afford them. So therefore they are disadvantaged in comparison to healthy citizen. For example, the biggest problem for autistic people is among other things safe and affordable and stable housing long-term. Please make that a priority especially in the housing crisis which will drive up more and more people to enter the NDIS program. By working with stage and territories to build more housing for NDIS clients, it will have a greater effect on the greater property market in the right direction. I would like to see NDIS provide a service for NDI's clients to be able to purchase a small mini home or a house or caravan and NDIS assist in paying that off in interest. Obviously collecting rent and at some point the NDI's client owning it for the rest of their life. It would greatly help to stabilize the person long term.
Q: What should the NDIS do to get the right balance between your choice and control, the dignity of risk, and supporting you to be safe? Has an autistic person. I really don't understand this question. It does not make sense to me. Sorry. But I think all my extra information that I provided in all the other questions combined answer this question very well. But above all others cost of living and access to affordable housing is the biggest contributor to worsening my condition of autism because it increases the stress levels which lead to worsening autism spectrum disorder. So I think NDIA needs to look at How I can access safe housing that is not shared with other people experiencing disability that is called autism necessarily only if they need it. But if they can live on their own but with extra supports NDIS should provide a safe place so that the disability is not aggravated and the NDI's plan has to be reviewed and supports increased most likely because of the stress levels and the disability worsen. It's a vicious circle.
Q: How can all levels of government work together to prevent harm and promote quality in the supports you receive? I think each state government and federal government needs to have oversized bodies on different providers as well to make sure they hold to high standard. Councils should join in the work of all the site to make sure that providers are doing the right thing as another set of eyes. If a provider is doing the right thing that they have nothing to fear but having additional people to review the service delivery is good. Law enforcement should also monitor and report to NDIA any breaches.
Q: What can be done to make progress in reducing and eliminating practices that restrict your rights or freedom of movement? As I've said in the past, having a advanced search engine and directory system for client to see all the service providers across all the types of service providers across all parts of Australia with a five-star rating system that is rated by clients so that I can look around all of Australia and see where I would like to live and where there's extra housing support or lower cost rentals, even small towns and be able to find all the supports quickly without looking too much around. This would feel free up my time and give me more freedom to move where I need to move.
The other problem is if someone is a nomadic client that lives in a caravan and travels from place to place, they should be able to easily switch to a different area. Find the supports in this search engine on NDIS website that I mentioned perhaps on the login side of things and be able to switch providers throughout the year as they move from place to place. That is very much ingrained in our society and allows more freedom for someone with a disability to live when and where they want.
I'd like to thank the NDIS review team for putting together this review and kindly providing suggested explanation questions that I was able to expand and a copy into each answer which helped because I'm autistic so I struggled to interpret the bolded questions. But with the auxiliary questions that explain the question, it was helpful.
Sorry, when I saw this review I got stuck in a time tunnel that autistic people often have. So I typed with voice typing ai keyboard on my pixel phone. This is a very useful tool in expressing my ideas because I'm not very good at writing by hand.
I would also like to recommend that the NDIS review team does not look at service providers with evil eyes or at clients with evil eyes. Most service providers do the right thing, but there needs to be controls in place independent of NDIS and overseeing all of NDIS to make sure that they are not doing things differently in each region. Also, sometimes clients with the physical disability on NDIS look down on people with a disability in autism spectrum disorder or other mental disabilities and think it should be removed. But I can tell you as a person with autism spectrum disorder stage 2 severity without the supports of NDIS I think I would be in a really bad state now. And I probably would not have been able to answer the questions because my autism would have been in a very severe state, but at the moment it is manageable and I get so much help from all the parts of my NDIS plan. As some of the questions revealed, some of the supports are outdated such as occupational therapist for an autistic person seems a little bit over the top. And they're often not trained to understand what autistic people need. Also, support workers need to have better training for autism spectrum disorder so that they can be more effective in service delivery.
Affordable housing is the biggest problem for most NDIS clients who are on low-income or are on disability pension. I'm personally on disability pension and I'm facing finding a new place and it has to be under $300 to be affordable. Otherwise I start cutting into healthy eating. And you guys know it well if you don't imagine needing to decide whether you pay for utilities or eat healthy food, which helps in managing a disability of most kinds. I think by improving and adding housing supply, particularly for people with a NDIS disability including autism, it will help Keep the NDIS program affordable and reduce the severity of each clients disability. I am very distressed about the housing situation and the difficulty in finding a rental that's clean and affordable and healthy and safe. I'm struggling with the whole thing. It would have been good for NDIS to have a special providers who specialize in assisting NDIS clients in finding affordable housing and the whole application process ETC. ETC.
I also think you guys need to leverage big data and generative AI which has become very advanced now and can be utilized in different aspects of the NDIS service delivery which will cut costs both for NDIA and service providers. But you need to make sure that each NDIS client gives consent for the use of their data in generative AI tools for faster service delivery.
So for example, if I'm filling out the NDIS application form, it should be able to be done online instead of a paper form with generative AI assistant next to me explaining each question with a person assisting me to fill it out. I also think the NDIS website or myGov that contains NDIS website and the NDIS app or the future section within myGov should include a generative AI tailored to me so that all my data is supported with a smart assistant that can assist me to navigate finding providers and managing budget and so forth so I can ask simple questions and it answers all of it. I should be able to opt in to such a service or opt out if I don't feel comfortable. Eventually most people will accept such a service because it will simplify things for them. It is definitely worth investing in generative AI in government service delivery because time spent less on such things means more time spent and getting a fuller life and having less problems and stress that adds to a disability.
Thank you so much for listening and I hope my feedback is helpful in designing a better NDIS for all participants.