NDIS - Changing Our Mind Set

Opening of the NDIS Area office

Rewriting the way we support people with disability to live in

the community. 

 

 

The changes under the ndis are changes that affect all Australians and the way we think of including people with disabilities and their families into the life and blood of our community. Enriching the woven fabric of life.  

Regular readers of my blog will know changes under the National Disability Scheme are about moving from a medical model of caring for people with disabilities to a model of participation. A model where the person with disability and family members are actively involved in the planning process to support them to learn, work and directly engaged in the life of the community.

 

Traditionally people with disabilities and their families and carers have watched on the sidelines. In the past people with disabilities have either been 'in care' or 'cared for in a community setting', rather than been seen as part of that community.  This model assumes that someone other than the person with disability is ultimately responsible for that persons welfare. In much the same way as being an outpatient of the local hospital. 

 

I have experience this attitude for hand over the years as a self - carer, despite my high degree of autonomy staff record notes about me.  One worker explain it as like I lived in a hospital.  If I was deemed unwell by a worker, my parents we called and needed to resume my care.  My parents never received a government payment for this.  My family were trapped in a one size fits all approach to disability care.

 

 

The ndis recognises the person with a disability as a 'individual' with individual needs and thus needing an individual approach to how they are best supported to live as part of the community. By giving individuals a choice of activities; providers; support styles; and times they want to be supported; they can also be choose who is the person or organisation to best support them to manage their package.  This is the first step in this person moving from being a bystander in the community to an active participant. 

 

Ndis is very much about assisting individuals to be directly involved in the community and determining how that will look like for them as a family or individual.  Some people will always need the level of support and assistance that I was once offered.  Some of these will require supervision at some level for example to take the right medication on time.  However that doesn't mean they can't chose their daily activities, the groups the want to engage in or their friends. For many the ndis will not change what their day to day life looks like.  But now I at anytime the would like a change they can request a review or a change at the time of their next planning meeting.  People with disabilities now are empowered to make choices. 

 

Working on one of my dolls for exhibition in 2018

 

When I spoke at thee opening of the Ipswich area office of the  ndis, I was excited about the changes the ndis would mean for my own life.  For too long I been trying to squeeze establishing myself as a local Ipswich artists and my voluntary work between my support times.  Support from support services I did not chose at times hat did not always fit. 

 

My first solo art exhibition at
Drawing Point Art Gallery

 

The ndis requires each of us to change our perceptions of disability and thus how disability support should be delivered. Now as participants in their local community, people with disability and their family members can be assisted in their daily living, accessing education and training, employment, gaining life skills volunteer work, social participation, social skills development, accommodation support or living independently, respite care for families, as well as assistance to purchase equipment, assisted technology, and therapy support.

 

Each individual plan aims to support the person with the disability to be as independent in the community as their individual disability allows.  So for someone like me, that means assistance to live independently in my home and individual support while accessing the community, where for others that might be supported accommodation. Which for the record my unit complex has no supervisor attached I am my own carer. 

 

Planning how to get from A to B under the ndis

 

I am independent in organising my own medical needs, medications, appointments, shopping and budgeting. Thus the NDIA agreed I could partially manage my own funding, which I do through a fund manger.  This may change over time as I grow in skills and confidence.

So you might be wondering what these changes actually mean at a daily activity level.  The ndis talks about individual goals and the process individuals and their families want to take to achieve these goals.  The best way to think about goals is these are the things or activities you want to do.  For example go fishing or buy a house. For all of us that will be different.  Foe me that is about establishing my art practise and business.

Founder and Director of Ignite Artists
For professional artists.

 

The choices individuals are encouraged to make are:-

how the would like to be supported; 

• by who (organizations and individual support workers);
• where they like to be supported (setting);
• when the like to do which activity.
• who will assist them to manage their support package

 

 

So day to day even though I run my small business from home, I still choose to have my shower before I start work for the day, rather than after I teach a workshop at 1 pm.  This is a new way of thinking for many organisations even those who have supported people with disabilities to live independently.  For years my shower would be at 11am or 1 pm, not real conjunctive to running a business or planning time to create art.  Lucky my working life was very different back then.

 

One of the things that excited me about transferring to the ndis was choices around services delivery times.  Not just saying early morning or mid-morning and being on a in-home service run.  These types of services assume that we can be home at a time that suited the worker providing my in home support that day. Even people with disabilities who attend day service support centers aren't going to be home at 11am everyday.

 

The pervious model of providing disability care  assumed a physical, intellectual, behavioural, physiological or sensory impairments meant people needing 'care' in some way and their lives there lives operated somewhere outside the norm. One of the things I looked forward to when I transferred to the ndis and using only one service provider was being able to make appointments because I knew when my supports times were.  I of course hasn't proved successful.  Staff work to rosters and 8 times out of 10 my appointments can't be made during the time I have staff and so I need to change my support time to suit. Which isn't always possible and never will be.

 

So when I was approached by a member of my team, about  if I could change the start time of my morning shift to suit school drop off, I was taken back. On that particular day of the week it would me not break from support staff and Ignite staff all day.  Tuesdays I start work at 10 am and Fridays at 9 am so for me supports starts a 7am on weekdays to keep consistency.  A question like that tells me my routine is or should be flexible. It hard to imagine another job where staff negotiate start times.  Having said that I do make exception around car servicing and doctors appointments.

 

I am glad I was able say 'if you have an issue with your roster then you need to talk to rostering or you coordinator' it the request is reasonable then they would discuss it.  If it been 15 to 30mins I would of maybe consider it. 

This is one of the scenarios I fear around engagement of my own team policies and management to fall back on.  I have been extremely flexible in the past, however choice of times and creating space to create is extremely important and something I always had to squeeze in. 

 

I might chose to have coffee with a friend during that time if the pop-in, but when I am paying for a service it will be when I need it, I don't want a shower at 9:30.  So when I got an email about could I change the day I want sewing support.  The thinking that my life is more flexible because I work from home is unenforced. 

 

 

 

When I say support any time after 10am (because I have pc and physio support prior.) that is being more than flexible.  I desire 10am to 1 pm but if its 1pm to 4 pm that's ok. Only to be asked if their any other day that would work for you?  This from a service provider still tells me my choice is only valid if it suits others.

Now I am considering change a routine that has been working well for me on the chance the can find a support worker who I get on with and they can use a sewing machine? In life we all need to be flexible and we can't all have the ideal all the time.  Occasionally we need to ask ourselves what principle or service is of most valued to me right now. 

I guess if I am writing about my timetable and how adding one change throws everything out then choice or time is a big deal for me.  I am not able to be as flexible as others would like me to be. I can out source my sewing.  I have one worker who will drive me one day a week.  Like what . . . 'why do I really want to give that up?'

More importantly I think the challenge for all of us is to change our mind set.  Those living with disabilities are constantly asked to fit in with a non-disable society. Those who use wheelchairs have opportunities limited as do those with sensory and behavioural disability.

 

Some of us have put business opportunities on hold due to service delivery time. Because we can't do things ourselves when staff call in sick and a replacement can't be found, we need to go without showers and reorganize appointments. That will always be 'our reality'.  Life never goes according to the script. However there are some things the ndis allows us to have choices about.  For me, 'that's staying at an exhibition opening as long as I choose.' As long as our choices do not put others or ourselves a risk or are completely unreasonable, then our choices should not be challenge. 

My blocking out 1 pm to 3 pm rest period is in my schedule for a very good reason.  I need downtime to lesson the likelihood of seizures as a busy person, having a timetable that is easy to recall  times when I am definitely unavailable is not unreasonable.  I can be flexible either side - some days it might be 12 to 2 pm instead, however history tells me if its not my timetable then it won't happen.

 

We are not less important.  I don't pull my support request out of a hat, my schedule considers all my needs and even if it didn't I should not need to feel about my choice. We need to change our thinking that people who do not work 9 to 5 can be more flexible. The lives of people with disabilities are not flexible or less important.

As those who work in the industry we need to be mindful of what messages or words and questions send about those living with disabilities. This is a mind set we are all still struggling to adopt.