The NDIS heralds big change to the disability sector. It promises to create systemic and lasting change to services and, more importantly, the people who need them.
Never, in living memory, have people with a disability had so much choice and control over their life.
Personally, I can’t even believe that I have to make that statement. It simply boggles my mind that an individual, regardless of dis/ability, doesn’t have choice and control over their own life. Yet, here we are. Even though I have 2 children with a “disability”, I never saw their path in life to be any different, maybe it would take longer to get there, or they may need more support, but they will all get there in the end.
But then, I have a plan. I always have a plan. I like to have a plan. A long term broad outlook on what is going to happen and how I intend to get there. I see it as one of my skill sets.
A few years ago I attended a presentation about looking at autism differently. There were two take home points that really had an impact on me
- Instead of seeing only the negatives, look for how they can become positive traits.
- Plan for the long term.
- Reduces anxiety in yourself and, in turn, the person you are caring for
- Helps keep you calm
- Reduces the “crisis mode” many families live in.
Because I am a planner by nature this really appealed to me. It makes a lot of sense. If you have a long term plan you worry less about all the things your child is not doing, as you know that little by little you are working toward achieving those long term goals.
While this article is about being ready for the NDIS, it is more about how to plan the best life you can for your person.
During the article I’ll be using key NDIS phrases (these will be underlined), with an explanation as what they mean either within the article or at the end in the “glossary of terms”. Having an understanding of these phrases should help you during your interview and planning stage.
Adjust your mindset
The most important, and probably the most exciting, aspect of the change when switching to the NDIS is a change in thinking. Systemic change is happening to the disability services industry. From what a service provider is willing to offer to a focus on what the individual actually wants and needs. The NDIS is a person centered plan.
Why is this exciting? Well, for the first time in recent history people with a disability has “choice and control”. What does this mean exactly? This means that a person with disabilities can now exercise full control over what services they receive and how it is implemented and who they have implementing it. Choice and control of your own life…This is a basic human freedom set out under the Human Rights Commission, of which Australia is a signatory. Yet it has been denied to a section of the population for so long we assume that it is acceptable
The NDIS is all about building the capacity of the individual. The individual. Not the service provider, not the carer but the individual with disabilities. It is there to ensure they have the best life they can, independent of their carer, service provider or support.
So what exactly is capacity building? Simply put, it is building on the skills and abilities of the individual to support them living a more inclusive and independent life.
Who is it for?
The NDIS is based on need, not disability. So what does this mean for a person on the autism spectrum? A lot really. Especially for the individual who “doesn’t look autistic” and blends into society more readily and is more capable of “adapting”. Because they can do such a good job of hiding in plain sight the toll it takes on them is often hidden. While the needs of individuals across the spectrum could be quite wide, with a good plan backing you there is a lot of scope for the NDIS to support you.
Have any supporting clinical documentation you need ready. Read and highlight any section that relates to their goals
Set aside time. A lot of it. It may seem like a lot of work, but all the preplanning is the most important stage. It will clarify where you are going. Just like any good behaviour plan, we are going for 95% proactive and 5% reactive.
I, personally, have a good cuppa tea, coloured pencils and white paper. I’m a mindmapper/flowcharter, I think visually. So what ever you need to do to get into optimum list making mode, do it.
Get a folder to store your notes in. I like these ones. It helps you to keep everything organised and within easy access.
Be ready to have a honest look at where your person is. This can be confronting. But it does get easier when you start the planning stage.
Vision for the future
Have a conversation, if you can, about what the person you are supporting sees in their future. If they could “live the dream” how would it look? Be bold, be brave. If they didn’t have a disability, what would they like to be doing? The vision for the future is something that is 20 years away. We are talking about looooog term thinking here
These are my son’s dreams for the future. He is 12, I don’t expect them to be the same when he is 32. They are not lofty goals, they are the goals of someone who just wants to have a happy life. These are not tomorrow’s goals. This is what we are working toward over the next 20-30 years.
- To be independent of his parents.
- To have a rich and happy life
- To do work he enjoys
- Work for the local bus company
- Clean graffiti off trains and train stations
- Become a city planner
- Have meaningful relationships
- To be building a life and family of his own.
Areas to thin about:
- Daily Living
- Hobbies and interests
- Health and well being
So you have had the chat about your “vision for the future”, let’s look at your person right now. Understanding where our individual is right now is essential so you know where you are going and the steps you need to take to get there. Failing to plan is planning to fail. In this section of the planning phase we are looking at;
- Their personality
- Their clinical diagnosis
- Strengths interests and talents
- Emerging skills
- Learning style
- Immediate concerns
- Long term concerns
Plan for the future
So by now you should have a fair bit of paper work, scribbled notes and spilled tea stains. Find the one where you wrote out your vision for the future. The 20 year plan. So it is time to fill in the blanks that lead to now. We do this by backwards chaining.
|Goal||20 years||15 Years||10 years||5 years||1-2 years|
|Family of their own||Family||Large circle of friends and acquaintances||Work, hobbies, school/education meeting people||
Naturally occurring social activity
Developing independence of parents
|Social skill programs, naturally occurring social activity|
Let’s take my son’s goal of having a family of his own. A lot of it is really up to nature, but basically he is going to have to meet that special someone 2-5 years before his 20year goal, so that can go in the “15 year” column. How do you meet someone? Well, hopefully through mutual interests, work and friends, So that will be our 10 year goal. How do we make friends? We need social skills and practice them in typical settings, there is our 5 year goal. So right there is out 1-2 year short term goal – Meet new people and encourage independent social interactions
Now meeting someone and falling in love cannot be planned, but between now and the next 5 years we can be working on social development and practicing them in everyday situations. He’ll be broadening his social circle and developing the skills he needs to be ready when that person does come along
Set short term goals
Short term goals are the items you set out in the 1-2 year stage. These become your goals under the NDIS, and because you have done the long term planning you can show evidence as to how these short term goals lead to a rich, inclusive life in the long term.
Social skill development are a big part of our long term goals, as they would be for many people on the spectrum. So let’s look at that specific short term goal for a 12 year old boy.
When we look at expanding our goals we want the setting to be as “typical” as possible, especially for social skills. Who better to teach a 12 year old boy how to act than other 12 year old boys? Who in their right mind wants to be 12 and sound like a 38 year old woman? So while formal programs like Secret Agent Society are very important, not all socializing should be in a formal setting.
This is what we came up with for our son. This is the “put all your ideas on the table” stage. Ask yourself “What would people their age be doing?” Then ask “Would he/she enjoy this?” The “How?” comes later, and this is where the NDIS comes in.
Social Skill Development/Social Enrichment
Formal social skill programs
Temple Grandin’s theory of “get out and do stuff”
Out and about skills
Social programs through The Little Black Duck
Social interactions with typically developed peers
Develop strong family networks
1950’s style etiquette program
The NDIS is NOT about services.
It is not set up for you to ask “what can I get for my individual?” This is the most brilliant thing about it. It is based on need and goals. It is all about building capacity and independence in your individual. This is something I can get behind, but it is probably the hardest part for people to get their head around.
The NDIS will look at funding something that is reasonable and/or necessary for the individual to live an inclusive life that is over and above what a person of the same age, without the disability will have to do/need to accomplish that task.
So, looking at the social skill outline above, the NDIS will look at many of the goals and say that it is reasonable and necessary for a 12 year old boy to be doing many of the everyday programs we have mentioned so the NDIS will not fund, simply because other parents of 12 year old boys will be paying for the exact same service. Fair enough. The question you need to ask yourself is “What is preventing them from doing it right at this moment?” If it is due to their disability, the NDIS will support you to remove the barriers.
- A support worker to
- Keep them safe
- Build on skills/capacity
- To become more independent of you
- OT to help manage sensory needs
- A support worker to help implement OT goals
- Speech therapy to help with social skills and language development
- Social skill programs that directly teach social skills
- Specialised equipment needed to support the individual
Understanding the terminology
It is not really your job to understand the ins and outs of exactly how the NDIS is worded or the line items you will need, that is what the planner is for. But, knowledge is power right? Some key words will help you when it comes to your planning session.
The individual – The person with disabilities
Building capacity – Building on the strengths and skills of the individual
Independence – Living a life that is not dependent on the primary carer.
Inclusive/inclusion – Living a life within the community and not segregated from it
Meaningful Relationships – These are relationships that are freely given and not through paid services. Examples being friends and family.
Choice and control – The ability to choose the life you live and how that happens.
Support worker – A person who Is hired to support your child in any way that will help develop capacity
I would read the line items too, if you can get your head around the terminology. There are pages of it, but well worth looking through.
As the NDIS gets closer to your area there will be many workshops and presentations on it. I would find one that suits your availability and attend it. The more you know, the better position you will be in when it comes time for your plan.