NDIS and the scary stuff!

Preparing for the NDIS is not a sprint. Right now it feels like I'm

climbing Mt Everest. The choices and decision making seem over whelming. So I am breaking it down into bite size pieces. Now is not the time to shop for services or even making decisions around how to  self-direct your funding.  In Ipswich you should be lining up at the starting line, as we move closer to the mount peak and transitioning to the NDIS things will start moving really fast.

STOP and BREATH!

There are years of emotions, doubts and mistrust around the choices and decisions you are about to make. Your first reaction to changes under the NDIS may not be the best option. As difficult as it is right now you need to take out a blank page and keep support staff, DSQ staff, politicians and the stuff the gives rise to your fear off the page.

Page One is about you

and your family . . .

This is called your Participant and Carers' Statement

A few terms

The participant is the 'person with the disability', unless this person is a minor from today, they are the person who will make the choices and direct their supports.

This is the first major shift in thinking in terms of the NDIS. Until now parents, care givers, guardians, government workers and support staff have had control over the lives of people with disabilities.

The carer is a unpaid person who is the primary support person. In most cases this is mum and dad. The carer can provide a statement to the NDIA, however the person with the disability can chose who will attend their NDIS planning session.  Planning is not about money, disability or supports.  Planning is about the persons goals.

This is the next shift is thinking. Funding until now has centred around the disabilities, money and supports.  At this stage in the race its time to tuck those things away.

If you are not attending the NDIS planning session you can provide a carer's statement and request to speak directly to the planner. However it will be the person with the disability who will present their plan. Of course they will need assistance, anyone attempting to climb the mountain alone is foolish.

As parents its time to let your child go, just like any other adult child. The NDIA is not going to approve any plan that will put your son or daughter a risk of harm and the majority of participants are going to want their family involved as they are the people who know them best.  However the person may ask other people to be involved to.

The more you can discuss the future under the NDIS and your hopes and dreams as a family, the more you can remove the emotional stress.  Now is the time to let go of the emotional stuff.  For me that's 30 years of stuff to dump, however for you and your family that may be longer. It will be impossible to achieve dumping 100% of your pain, but the less emotion you can take into your planning meeting the better.

So what goes into the statements?

You statement will be in three parts

• Who I am
• My hopes and dreams for the future
• What life looks like now

There will be a statement from the participant and a statement from the primary care giver.  Support staff may help capture this but can not make a statement or be involved in writing the plan, unless invited by the person with a disability.

Let's tackle the carer's statement first as I expect that has more emotion attach and if it involves an adult child it will mean accepting your child may make different choices to what you would make for them.

So this is about the family and how the person's disability impacts on your life. For some it means one parent has been unable to work since your child was born 57 years ago.  This is important, you want to make a clear statement removed as much as possible from emotions.

Have said that you will want to include something about the emotional toll or the impact of disability on your family.

Hopes and dreams . . . We all have hopes and dreams for our children even if there is a disability involved and we also have fears. Let us acknowledge for older carers that includes death. What happens when one or both of us die.  The conversations at this stage needs to open, honest and frank.  So that may involved some family counselling and/or talking to your adult child who is non-verbal about death. 

Some conversations might need to take place without the person there and talking to siblings about things like guardianship, group housing or nursing homes.  As you write and rewrite your statement I imagine their maybe a degree of grieving. So yes for some families the NDIS will turn their world upside down.

Your statement will look very different to the participant's and that's ok! What your needing to do is capture what your life looks life now and what you want your life to look like under the NDIS.

So you want to outline your family structure and any informal supports you  have from others.  Harry takes participant fishing once a week so the family can attend church. The formal supports the participant access now and how that impacts your family and or living arrangements if the person lives with you.

Any impact you age and health has on your ability to provide care for the participants into the future. Your ideal future under the NDIS: for you, your family and the participant. This is things like dad returning to work; participant transition to move out of home; spending more time with the grandkids.

Note: The NDIA will only fund the supports needed by the participant to achieve their NDIS goals. 

'The participant' doesn't have any goals or can't tell me what they want. I would challenge that statement. We all have goals whether we have a disability or not. Your long term goal may be retirement on a good income and owning your own home for security and piece of mind.  It could just be you have never voice it in that way. The participant's goal maybe to play football on Saturday and win the grand final this year. They way they chose to achieve that goal is to be a member of the ALARA football team and attending training and the game each week.

The participant statement

So the participant is about who they are as a person. It may be something like: I am 32 and a big brother to my little sitter and two brothers, I enjoy living at home with them and going fishing with my brothers on Saturday. I like working at Coles and collecting the trollies. I work on Tuesdays and Thursday night. Sometimes Craig and I race, but if we got caught we could get fired.

My little sister Jo is getting married in October, so she won't be living at home any more, she and Tom are looking at buying a house, I think I will miss her a lot.  I feel sad when mum and dad talk about dying.  I don't want to talk about that. I wish we could live together forever and no body ever died. Craig's brother died last year in a car smash, he was very sad for a long time.

Some weekends I stay at Craig's place. Our mates all go to the pub after work on Fridays, except I don't work on Fridays, I go to my life skills course. If I want to meet my mates at the pub, dad drops me there we play pool and have a few beers.  Sometimes to many beers. Then we crash at Craig's and sleep most of the day.

Craig has asked me to move in, but I think I would miss my brother and going to watch the Cowboys play. I hope the Cowboys win the grand final.

I don't know much about the NDIS I think it will be ok. As long as I can keep working at Coles and hang out at the pub with my mates.

Let's call this participant Cody - Cody's statement gives us a very good look at what his life looks like. Where he lives, who his mates are and what he enjoys doing. I can see Cody having trouble writing his NDIS plan, but his participant statement is defiantly written by him. I am sure his parents carer's statement will read very differently.

His statement tells me he may have an intellectual disability, but articulates very well.  He can tell us what likes: a beer at the pub, being with his mates, work and football.

Cody has also given us an insight into his world and what he thinks of future. Right now Cody is unsure about the future and the upcoming changes in his life. Like his sister getting married. He's dad's statement tells us the Cody is the best man and his excited about that. Mum and dad would like Cody to move in with Craig. We know how Cody feels about that.

Cody's life doesn't look much different to his siblings, other than he only works part-time.

Both Cody's and his parents statements gives us a good picture of what his life looks like now. Some changes to his living arrangements and some of his goals which can form part on his NDIS plan.

Cody has a disability, but clearly he is thinking about the future. Cody has started his NDIS journey and feels very unsure. At this point I think Cody needs more information and should ask Craig to help, but that's up to Cody.

 life skills course. \\\

    climbin