NDIS - What's the deal?

Some one made a comment yesterday, 'that nothing has changed under the ndis.'

 

And I believe that is what some service providers want you to believe so you don't leave their service. Let me assure  you plenty has changed under the National Disability Insurance Scheme. The ndis is primarily about giving you choices.

 

• Choices around the activities you want to participate in. What are the things you want to do each day? Things like fishing, learning to drive, arts n craft, study, working out at the gym or going to the movies.
• The ndia talks about 'goals'. Don't let that put you off. All the want to know is a) what you want to do? e.g. look for work; b) how you want to do it? e.g. supported by your current support provider; c) who you want to assist you? e.g. support worker or a supported work network; d) what type of assistance you need, when and how often?  e.g. attend job network meeting every Tuesday. These are some individual choices you can make.
• These goals or activities (the things you will be doing) will determine what your ndis plan will look like.  You might be happy with life how it is now and make no changes. You might decide to look for volunteer work or learn something new, but the way you are currently supported is working for you.  Or you might feel you've being doing the same thing, everyday, with the same people for the last 5 years and now you want to explore the world and try knew things. Whatever you want your life to look like from now on is your choice. If you don't want to go to art class. STOP!
• You can also chose who will support you to manage your ndis package and supports.  Whose going to help you get the things you need, budget and pay for your services?

Paying for you own supports with your ndis money is the biggest change that has ever happen.  Just like going down to your local Coles to buy breakfast cereal you choice the one you'll enjoy the most.  You don't need to worry about the costs the ndis has set the prices and the amount you have to spend based on their pricing guide, you just choosing a provider (or who to shop with) and who you want to trust to help you do that. You can choose:-

 

• The National Disability Insurance Agency to do it for you. However you still get to choose what you want to do and how you want to do it!  If you feel like you don't have choices you need to tell someone or call an advocacy service. You have the right to ask for a review if you feel you haven't got what you've ask for.  See the ndis website for their appeal process.
• You can use a fund host provider.  This is a little bit like choosing a bank.  Do you choose Westpac or the NAB?  Your local area coordinator can assist you to find a funds host provider.  Just like your bank your host provider holds you funding and will pay for your supports as you use them.  These host providers may also provide advice and support to help you find the right supports to suit your needs.  But the can't not tell you which provider you  can and cannot use.  So if you feel that is happening speak up and tell your Local Area Coordinator. Under the ndis you do have the choice to change providers and your LAC is the best person to assist you to make this change.
• Plan manager - this puts you in direct control.  Your plan manager will assist you to book your supports, negotiate with providers if that's what you need, and pay invoices as you receive them.  This is how I am currently managing my supports. You can choose to directly engage supports and services under a plan manager.  Self-directing gives you the option of using a 'genetic/home brand' service.  e.g the physio doesn't need to be a ndis provider or you can pay a cleaning service instead of a support worker to do your housework.  Do not let a provider tell you, you need to purchase everything from them.  That is not choice!  You can engage anyone who has an ABN. Again speak up and tell your planner or the ndis if you are being locked in to service(s) you don't want. If your ndis plan allows you can employ your own support team.
• Self-management without a plan manager means applying for your own Australian Business Number; opening a new bank account solo to 'house your ndis funds' - you can only use this money to pay for your ndis supports as set out in your ndis plan and agreement with the ndis.  This will mean you directly need to pay the service invoices; or support workers wages and report back to the ndia on your expenditure. You will also need to do a tax return. My advice is to catch to a finical advisor first. Most banks will provide one free session to their costumers.  Make sure you get advice on insurances needed as well.  As my art business insurance is due this week I took the opportunity to find out if I am directly employing my own support workers do I need a second policy and the answer is YES. Now what a direct service provider won't tell you is their are service providers that specialised in assisting you to directly employ and engage a team of support workers.  You do not need to fly solo and take great finical risks as most providers will suggest.  Let's face it if you make this choice service the lose your $1,500 administration fee. This could become the money you use to engage a recruitment service.  But check you are allow to do this with your local area coordinator first.  Every plan agreement with ndia is different.  There is no standard plan do not let a provider tell you that.  When in doubt, find out!  

Regardless of who is assisting with the administration of your funding, this is your funding to spend as long as you follow the rules and budget set out in your plan and you can ask for assistance to do this.  I know this for a fact because I asked for this assistance to be included in my package.

I am also not the only one documenting my own journey. If you're reading my blog you are obviously have internet access. Use it! We goolge everything else. Google what you want to know.  Google bloggers who are doing what I am.  Join facebook pages.  If your sitting there feeling alone and disempowered.  STOP! Empower yourself and access services like the Queensland Disability Network or advocacy services.

The ndis is the game changer, STOP BUYING THE CRAP that you still don't have choice or you can't take on the big guns! We fought tooth n nail for the ndis, don't lie down now and keep giving power to service providers.  They gloss over your rights and the service agreements to meet their requirements.  Instead o sitting unhappy a copy of your rights and complaint procedures should be on their website or exercise your rights and ring and ask for a copy. 

If we sit here and accept things look no different under the ndis then we are buying the lie that providers want us to.  Even if you were locked into a 12 month agreement by your provider you can seek to break the agreement. I did just that this week. 

Sure my provider beg me for another chance,  I replied you put your energy into fixed the problems before you lose more clients.  I've lodged numerous complaints in the last two months, I couldn't threaten to leave for much longer.

I am sitting here wondering where my worker is this morning, is it on her roster its on mind.  I have plans I said I would be places today.  I can no longer threaten to leave. 

Please if your not happy, fight with me! Until we collective say to providers we no longer accept a second rate service the will continue to develivery in the manner they always have.  Its you're package that pays them, you are entitled to what you need. 

If you want to be counted!  Stand-up to be countered!

The high's and low's Self-Managing under the ndis

Today's a sad day for me. I have just given notice to my current support provider to end our agreement, after many months of mismanagement of my roster and weekly occurrences of some supports not being delivered. Now the reality of telling my workers I am leaving, has set in.  I was not all huff and bluff - months of fighting to have the service agreement delivered have failed. It's time give up the fight and start making a new plan.

 

 

 

What am I fighting for?  Flexible service delivery that is reliable with a monthly roster, that works around my art practise.  Not an organisation looking for staff the day before.  I am now looking for workers with certain skills and an interest in art and certainly that the support I need will be delivered on the day as requested.

 

Hear my greatest fears are about to be faced

FEAR - There may be not grass on the other side, and may be it will be a mud-bath. My local area coordinator is encouraging me to build my own support team.  If workers break boundaries now 'what if happen the boundary wholes happening  now, continued once I directly supervising my own team? Can I do this? Can I cope with the stress of finding and building my a team I can trust. I know its a chance I need to take.

 

There was no roster, no certainly for two weeks.  Time wasted everyday, 'we can't fine any workers who else can we try'.  'Hang-on I am paying you to provide this service', because I don't want too do my own staff management.  'You find a worker or call an agency.' Sadly that's not the way the provider wanted to work and rostering is now becomes part of self-managing.

 

So I sit at a fork in the road.  I am about to travel path 'B', at the same time path A needs to end cleanly. To achieve this a service exit plan developed, because I signed a 12 month contract I needed to give formal noticed .

I am about tell my staff, I am adding to  my stress leading into my end of year exhibitions and business planning for 2018 buy leaving the service they work for and directly engaging my own team.

A choice that makes no sense but nor did wasting the last 4 months hoping service provision would improve. The energy wasted fighting for what I want will be better serve search for what I need to feel supported to grow my art practise. .

 

The interim involve two interim agreements.

 

1. The current service exit plan.  Agreed date, fees and charges.
2. And interim agreement with a support provider while I recruit and train a team.  (I've been able to action this part of my transition today due  to dialoguing with them during the last few unsettle weeks. The few hours I was signing over today became all my hours.) This boosted my confidence and they are now looking to fill my roster to the end of the year, while I focus on building the team I want.
3. I also need to seek changes to my ndis plan to cover additional costs.

The next step is to talk with a friend who is already engaging her own support workers.  Service providers are telling me that's a huge risk, but I now buying my advice form the manager of the Ipswich area office manager who knows it can be down successfully. By engaging an interim provider I have effective brought myself peace of mind and space to find what I need in a support team. If plan B doesn't workout I can extend my agreement period while I work out plan C.

Self-management for me is insuring I have good supports around me and safety nets ready to catch me when I fall. So far my back up plan is working well for me.  Service providers need to know the need to deliver what the promise and being short staffed is no excuse.

With that done now its a matter of deciding the best way to recruit my staff, write job descriptions, advertise, hire, write service agreements for each team member and train them. Surprise! Surprise! I have already talked to a organisation about this.  I don't need to do this alone as support services who have you believe. 

I also talked to my mum and my Local Area Coordinator yesterday. Clearly my current agreement has failed me. Yes! I could be about to jump in the mud, but I know I have help to call on if I get stuck.

Having meet with my interim provider, notify my plan manager and my local area coordinator and asked for all documents to be prepared for signing off on by 10th November.  I feel I have started a difficult and painful journey well.

   

 

 

 

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.

Story of Deb's Dolls

Meanwhile in 'The Melting Pot'

 

She provokes fear . . .

 

Hidden beauty . . .

 

Unknown identity . . .

 

Lies surround her . . .

 

WE SIMPLY FEAR THE UNKNOWN

 

NDIS Soilder On!

We've been looking at how your individual life goals can help shape what your NDIS package can look like. I am a member of Ipswich Rocks Facebook Group. #ipswichrocks.  Members of the group paint rocks and hide them for others to find.  I joined the group to promote my business Ignite Artists during the FUSED Festival but not its a fun way to interact with my local community.

 

 

 

The National Disability Insurance Scheme is for all Australians under 65 years of age and is designed to increase the social and economic participation of people living with disability. You can access the scheme if you have:-

 

• A life long disability
• Need assistance with daily living tasks
• Or therapy and/or equipment to improve your level of independence in the community. 

 

The ndis provides more choices for individuals and families living with disabilities.  This people are now actively encourage to take part in decisions about:-

 

• What they want their life to look like now and into the future.
• To achieve this the ndia want to know what you goals are.  Goals are they things you want to do. This could be learning how to build a boat or finding a part-time job. If you want life to look like it does now, that's cool too!
• However you might be a parent of a 5 year old. At five I didn't know what I could do. Let alone decide what I wanted to be when I grew-up but my bet is you want to give your child every chance to reach their full potential (whatever that means for their type of disability). At the same time you will want to look after yourselves and other children in the family. That might mean some respite care and siblings activities.  For families with children with disabilities that means selecting options that benefit everyone in the family.  Initial your goals may be therapy and education based.
• In planning for the ndis I suggest you don't focus on the money, rather

1. What you want to do (goals & activities)
2. How you want to do these things (e.g centre based activities vs one-on-one support)
3. Types of assistance you will need (e.g. help to get your child ready for school or some-one to come and do some cooking or house work while you have time with the children. and respite care will come in here too.)
4. Equipment to maximised independence or the might be an assistance dog.
5. How to improve communication with the wider community. (e.g school or workplace)
6. What therapies with maximise your independence over a lifespan. 

 

While I have always been clear on my goals and the activities I needed to do to achieve my goals, I found my planner and now my physio were able to help me think of more ways to increase my independence, safety and confidence.  The ndis is about living your best life and for all of us that will look very different.

 

 

Living my best life

 

During my life I thought I wanted to do many different things, until I found my true passion at 45 - art!  However I also want to be an advocate for other people with disabilities.  This started when I joined the 'Leaders For Tomorrow' Program and the 'Everybody Counts Campaign. So when I started planning for the ndis I knew my goals and I also knew I wanted changes.  Until now I don't think I've been living my best life.

 

One thing I knew was I wanted less services and less support workers in my life.  I was feeling suffocated and not in control in my own home. However, I knew I wasn't ready to employ my own team of support workers either. This is why I chose to partially self-manage with they assistance of a plan manager. Other options included having the NDIA manage your supports; or a host provider manage your package on your behalf.  Your host provider and support provider should be two different services.

 

It is my belief that if I do everything I can to look after my health and well-being I will be able to live on my own for longer. A huge part of the ndis is about planning for the future not just what's happening in the next two years.

 

We all have a number of goals even if we don't label or recognize them as goals . . .

 

 

SOLD!

 

Things I want to do .,

 

• Make art
• Sell art - Art Exhibitions
• Encourage other to make art and be professional artists.
• Advocate for people with disabilities (Qld representatives on the Support Studio Network and write a blog).
• Keep physical active
• Take a healthy approach to the aging process.

These are the type of responses to the goals the ndia is looking for. Not 'I want to be the iron-man champion of Australia', but hey if that is your goal go for it!  

 

So you might have a LONG TERM GOAL the ndis can support you with, like moving into you own home or a home where others live.

 

LONG TERM = 5 YEARS OR MORE

 

A long term goal like:- Exhibiting my artwork overseas might achieve by reaching milestones or SHORT TERM GOALS.

 

SHORT TERM GOAL = 1 TO 2 YEARS

 

My short term goals for 2018 - 2019 are:-

 

• Enter local art competition
• Host a solo exhibition outside Ipswich
• Visit as many exhibition as I can
• Continue to work with Aspire Art Gallery, Brisbane Rotary and Lethbridge Gallery..  

 

Each of these short term goals will assist me to achieve my long term goals.

 

DAILY ACTIVITIES

 

These help me achieve my short term goals:-

 

• Make artwork to exhibit and sell
• Enter art competitions
• Visit art galleries and exhibition openings
• Write gallery submissions
• Be involve with arts connect
• Deliver art to galleries
• Plan exhibitions and opening nights
• Attend and present visual arts workshops
• Be involve in community activities like Ipswich Rocks.

 

 

Entry for Facebook competition

 

Go to Ipswich Rocks Facebook Page

 

and like my photo

 

person with the most likes wins!

 

I will be hiding these next week

 

Keep an eye on Ignite Artists Facebook Page for rock locations

 

 

What support did I ask for to achieve these goals?

 

The NDIS provides reasonable and necessary supports to allow me to achieve my goals.  These include my core supports in home and community individual supports, mobility and assisted technology, ot/physio and hydrotherapy and my Plan Management Fees.

 

I believe knowing my goals and how I wanted to achieve them helped my planner design the package I needed.  I don't need assistance with social interaction so things link activity day programs are not in my package. 

 

My struggles with my supports continues to be that nitty-gitty stuff and life seems to get in the way.  Transport and getting to my appointments is an on-going thorn in my side.  My health is not what I hoped meaning Hydrotherapy is not an option.  But my weekly routine is working better than ever.

 

If you live in Ipswich remember to lock out for my rocks.

 

 

Lost in Translation

 

In 2013 I founded ArtISability, the program commenced as a three day workshop program for artists living with disability in the Ipswich Region. These workshops focused on both the artistic and professional skills needed to develop a visual arts program. 

 

After graduating from university I worked as a Christian Youth Worker at 22 this was the first time my speech disorder had even been noted by others as a potential problem in my working life. Some students were struggling with my speech impairment and I was not able to deliver the same content in the same time frame as my peers. Yet I was becoming an accomplished speaker and training others to deliver training.

 

This soon was forgotten as I became chronically ill and battled for 20 years with chronic fatigue syndrome and depression.  However during this time I became a poet, studied creative written, had a leadership positions in my church and tried studying to be a lay preacher.  I worked with groups from 4 to speaking to 1000 youth at a youth speaker.  My speech was never an issue in this environment.

 

In 2000 I became a published author this meant promoting my book and a series of speaking appearances. One reason I decided I didn't want to be an author. I also regularly attended children's literature and writer's festivals.  At the same time and was involved in the Ipswich poetry feast and lead some training on behalf of Disabilities Services Queensland as well as I continuing to teach Sunday School. 

 

During this period the only reference to my speech was while  performing my poetry.  Performance is a very different skill to public speaking, but my fellow poets always encouraged me to have ago,  assuring me I was a valid member of the poetry community. 

 

There were days where my speech was completely clear and I shorn and then there were days when I wished I didn't walk on stage. However I developed the motto that if 'I didn't take opportunities to speak and perform poetry, I would deny myself that chance to shine'.

 

  

However, there was some concern the powerful messages in my poetry at the time was being somewhat lost in my delivery.  So we provided copies of my poem after I performed. As a suffer of chronic ill health a simple cold would really affect my speech, but I soldiered on as I always had plenty to say.

 

 

 

 

Admittedly, their was one area in communication where my speech would fail me and that was when using the telephone.  Using this technological device required the use a lot of energy and it requires me to do several difficult things at the same time.  Coordinator my head and hand movements while I speak. While also controlling my breathing.  Yey! For hands frees phones.

 

However into the next decade of my life speech issues seemed limited to the phone as frustrating as that was.  After a period of illness in 2012 I was bugged by a few people to apply for the leaders for tomorrow program.  However I saw my life heading in a different direction I wanted to explore my art. Not realising the leadership program would be instrumental in my development as an artists and arts administration.

 

I had tried studying art at TAFE in 2002, as definitely enjoyed experimenting with drawing and paints, I also knew I had some abilities in that area. However at that time my life was crowded by a number of leadership roles including on the Board of Community Access Transitional Service, where I eventually became the President. A role that required me to chair meetings and do public speaking. I was reluctant to take on this role due to my speech.  Strangely the one industry I felt my disability was a handicap was the disability sector.  Here I was also a client and thus dependent on others for help.

 

The board assured that they would supported me in the role as President. I found this role to be one of the most rewarding roles I have ever undertaken.  Not to mention the skills and the knowledge of the sector I gain, that now assist me in my current role as manager of Ignite Artists.

 

During my leadership training I wanted to host an art retreat for people with disabilities (interesting I knew very little about art and different types of art). What I did know was about an organisation called Access Arts who supported artists with disabilities; how to write a grant application and Judy Baker). Judith was a fellow poet living with disability herself. 

 

 

"Once my artwork is hung on an art gallery wall . . . my disability becomes invisible.'

Judith M Baker (2014)

Author, poet and visual artists

 

 

Together Access Arts, Judith and ALARA put together a program called ArtISability, now known as Ignite Artists. The challenges posed by others in this role were:

 

•  how could I manage a program when I had a significant disability?
• how could I lead a art group or workshop when I had a communication disorder? Support workers of other clients would ask, "where's you teacher?"  I am afraid I am it for the day!  ALARA staff would confirm this and the had to put up with me for 2 hours. 

 

As new scenario was emerging, the real problem was not my speech but the fact I was someone in a senior leadership role with  disability.  Decimation from the sector I'd worked in for 15 years (unpaid) was still very real and those working in the sector do little to encourage and enable people with disabilities to achieve their goals.

 

Despite my experience and qualifications there was an expectation I would continue in a unpaid position as project manager. During my leadership training despite 15 years experience I was viewed as a new comer. My skills and authority were under constantly questioning.    Other people would call the grants officer at ICC for information to be referred back to me as the project manager. 

 

As far as the Ipswich Council was concerned I was the most quality person in disability arts in Ipswich at the time and they didn't understand why service providers  and people I had sub-contracted had an issue with that. Eventually I stuck around long enough to make service provider realise I wasn't going anyway. 

 

However I could do little about the perceptions of other clients. We were clients and to many support workers that was that! People with disabilities in general are disempowered by society, and constantly reaffirmed as less than capable and an environment of co-dependency strongly exists in the disability sector.  We are slow to move from a care model to a model of active participation in daily life.  So it is natural for other people with disabilities to view me in the same light as themselves.

 

 

 

Gradually other clients see that I am able to be a voice for them and they can do things (like painting), they previously thought was impossible.  If only I could find a way around that initial phone call where clients and support staff thought we were allowing other clients to answer the phone.   

 

Two years into running a program I designed, for the first time one of my own employees challenged me, 'surely you must know how confronting your speech is? 

 

The reality is I still to this day do not know what was meant by that statement.  Building my business networks was never an issue and the right type of people seem to stick round. 

 

Personally I don't not think my speech is the real issue.  The real issues is society as a whole devalues people with disabilities and policy makers continue to send mixed messages about our value in a community context. Statements like, Australia can't afford the National Disability Insurance Scheme,  reflect how under valued people with disabilities are.

 

People living with disabilities, including intellectual disability are more aware of the 'politics involved in receiving support than we give them credit for.'

 

Many people with disabilities are trained in their responses. In working one on one with my clients reveals just how disempowered they feel.  Giving responses they assume a carer or myself wants to hear.

 

Even at the opening of the Ipswich NDIS office, I cringed to hear myself and other people with disabilities being referred as 'LESS  fortunate' our language sends a clear message to those with disabilities that we are not equals.

 

This is the environment in which I endeavour to build inroads so we can have an inclusive arts community.  An environment where my message is continually lost in translation.  Issues with my speech impairments provides a smoke screen to the ways society continues to disempower those living with disabilities.

 

 

NDIS - Biluding A Brighter Future!

 

Playing our own Melody

 

The National Disability Insurance Scheme gives people living with disabilities and their families the chance to direct their own lives and thus includes planning for the future, in order to allow people to live their best lives.  I know in Queensland until now their has been little planning towards 'what the future holds'?

 

Readers of my blog know that the policy around the NDIS and funding for disability care was a direct result of a campaign by people with disabilities, their families, carers and their supporters called 'Everybody Counts'.  We were being asked to be counted in!

 

Prior to the commencement of the NDIS, disability support was largely around 'plugging holes' and enabling families to operate in survival mode due to lack of funning.  For parents of a child with disability (including my own parents) this was a major concern for this child's future is their care after they are gone. Not all parents have children as autonomous as me.

 

However my informal supports after my parents  death and what I want for my own life is a conversation my family has to have. So futures planning was born from elderly parents (that is some people with disabilities in their 40's and 50's) whose parents were still caring for their adult children at home. 

 

"What happens when to my child when I die?"

 

 

People with disabilities are family members

 

Previously for many families who have adult children living in the family home received no government support at all after their child turned 18 (not even assistance with personal care). Post school options were limited to:

 

• sheltered workshops - where individuals were either employed and under paid.
• Low paid employment in the open workforce  for those who could find it;
• One or two days a week in a respite day centre.
• eventually post school options became available 

 

These post school options did little to encourage real participation in the community or working towards the best possible lives for people with disabilities. Rather the focus of  respite day centres or 'day programs' were about giving parents a break from caring for there adult children. A chance to do the shopping, pay the bills and maybe time to relax and have a coffee.  Gradually parents and significant others for adult with disabilities, this wasn't enough, and the aging process took a toll on the bodies and their son or daughters. 

 

 

 

Being a participant means we are actively involved in the

community, making a social; economical or political contribution

 

As a society and therefore the Ipswich Community we come from  'a medical model or patient care' of disability care.  This model:-

 

• Put everyone in a box. e.g Children with CP were automatically referred to the Cerebral Palsy League, where further boxes were assigned and a recommended paradigm of care was prescribes.  Too often the file marked as 'no hope', special school until 18; then sheltered workshop; or day respite and/or residential care.  A life map was handed to parents of a child as young as two years of age.
• The consensus of thought then was children and adults with intellectual disabilities could not learn, no matter what the degree of intellectual impairment was. Schooling was simply to meet the government's of the day requirement, that all school aged children attend school. At this time special schools did little to teach students or prepare them for life after school.   To their credit some schools introduced, daily life skills courses such as cooking and basic cleaning to prepare them for 'community life'  . Things like making a cup of tea and lunch fully supervised. Post school options were simular to all children born with disabilities.
• However not everyone is born with a disability. Disability can occur as a result of accident or illness. In some cases individuals are left with high-complex nursing needs. Meaning nursing homes became their only option if they needed 24 hour care. While totally dependent on others some of these young adults retain their high intellectual function. Moving into a nursing home at 26 was a life sentence. Other adults left with disabilities were given rehabilitation however employment opportunities remain poor.   
• Life for those with disabilities whether from childhood or later in life meant life lived on the sidelines and sadly all too often this included family members.

The NDIS moves from a medical care model to a system where individuals and family members are actively encouraged to a participant in planning their futures. This includes the type of activities they chose to engage in; the types of supports the wish to access, who they want to access supports and services from and when they would like those services delivered.

 

Perhaps 'choice and control' were not the best words to use to convey this message to the general community.  Choice doesn't mean people with disabilities can do whatever they want with tax payers money. The 'Choice and Control' model recognises that people with disabilities are not ill and thus do not require patient care. The only people responsible for the care of people with disabilities are their Guardians/unpaid carers, parents or adult guardian are the only ones responsible for the welfare of individuals with disabilities. 

 

This is no longer the responsibility of  service providers and certainly not support staff.  This responsibility is separate to a 'duty of care' a worker or employee many have.  Duty of care should never restrict personal choices. This is a major change in thinking  for the industry to struggle with as the NDIS rolls out.  

 

We need to be clear on what individual choice is and how that enables individuals or families to participate in their community. Like all parents, parents of a child with a disability want the best out come for their child. That a big responsibility to take on over a life time. For the first time the NDIS recognises we are all individuals and the 'tick the box' method failed many.  There NDIS gives people the opportunities to participate in life at a level suitable to the level of disability.

 

 

 

 

The National Disability Insurance Scheme which encourages active participation and access to advocacy services, is the best way we can ensure the human rights of individuals living with disability are upheld. Under the medical care model of disability care we witness a system the covered up systemic abusive. This previous models with all their safety and security checks failed.

 

The best people to advocate for the support needs of the person with disability are the person with disability and/or the people who know them best, this includes family members and their natural support networks, not government or agency employees accept where individuals are under the public trust.

 

With advances in science and technology we understand a lot more about the human brain and therefore the true capabilities of individuals living with disability especially in the insistence where individuals are non-verbal.  The absence of the ability to speak does not impair intellectual ability, where a individual has both impairment's the level of functioning may differ.

 

Traditional thinking was that children with intellectual disabilities can not learn.  Today we know this is medically unsupported. 

 

"If a child can not learn in the manner in which you teach,

Change the way you teach.'

 

 

 

If a person can learn to walk and dress independently, that is the only testimony that we need they have an ability to learn. I do not need a IQ test to tell me that a child can learn. What is up for debate is the best learning model for an individual child, and what learning content is appropriate.  In some cases children with learning and intellectual disabilities are able to attend mainstream school given the correct learning supports.

 

However the method of education should be the decision of parents, not people deciding an individual probable post school. To my opponents I say.  'It works until it fails!' In terms of education we can always change the original choice - its ok to get it wrong. There is no correct map to follow to the future.  If you have on can I have it?  It would make life and decision so much easier. The deliberation of how to give you child the best chance in life in not limited to those who have children with disabilities.

 

So may be someone with a intellectual impairment is  not going to hold Masters degrees, however few of us do. However we know some people with intellectual, learning and sensory disabilities are attending universities' in Australia. Post school options look very  very different to what the were 10 years ago.

 

Options include:-

 

• Study after year 12
• Training opportunities
• Life skills training
• Sporting opportunity
• Employment
• Community work
• Travel
• Day services
• Recreational and group social activities
• Specialise support services like an supported art studio
• Supported accommodation options
• Roles in policy making and the legal system

All the things that enable individuals and families to participate in community life and living their best life.  However, beyond this the NDIS looks at what gives individuals the most independence in their local community into the future?

 

This could be:-

•  Is it assisted technologies,
•  Modifications to the home or the family car
•  Mobility equipment
•  Developing independent living skills
•  Moving into support accommodation
•  On-going therapy support

 

 

 

 

To determine what this can look like under the NDIS, individuals and families are asked what their goals are or what are the things in life they enjoy the most. Choosing daily activities are the things all of us like to choice.  We're not talking about choosing to buy a house here, but that's not to say it is not a choice for some people. 

 

Most people regardless of their intellectual abilities, when you give them a list of activities can give you an indication of what they want to do. And that's where your planning for your future under the ndis planning begins. What do you want your life and/or the life of your child to look like? What daily activities do you want to engage in?  These are the things that should determine your ndis goals.

 

The choices you are able to make are: the things you or your child needs assistance with; the types of support you want to access and who you want to provide these services. If you are new to receiving disability support services or not sure about choice of service providers to chat too you local area coordinator can assist and there's a list of providers available on the ndis website. Don't wait until your plans approved check on the net and see what's out there!

 

 

 

One of my life choice's is to work as an artists.

 

When preparing for my ndis planning meeting not all the advice was correct or helpful. I acknowledge some of my own advice was incorrect that's why I sharing my journey with you.  I can't cover every aspect of the process for each individual classification of disability or age range.  At different ages you or your child will have different needs. I think for me I am guided by those I know best and other service user's.  

 

For some like me life under the NDIS isn't much different and that's ok.  Just because we now can actively participate in making choices doesn't mean we need to make changes if where happy with life now. However it is important that we give people are given those choices and the information so the can make informed choices.

 

I now know in your first planning meeting the NDIA what to decide on two goals and a goal for your first year.

 

 

This year I want to extend my art practise

 

One step is this week I have artwork at Aspire Art Gallery, I am joining the ARTTIME Arts Smith venture and was in invited to exhibit in Springfeild's Arts Connect Exhibition. For me at a support level this has meant my support workers assist me to prepare artwork including putting pieces and delivering my work. Some is more work than fun.

 

 

 

 

Holidays are part of my looking after my health and wellbeing goals. (No the NDIA does not pay for this)

 

This is my second goal and part of my futures planning.  Maintain my health keeps me strong and able to living independently, unless one day Mr Right comes along. Living a balance life is part of this and so is my annual leave. This week has been more about timetabling, physio, finding a new worker and gardner, service agreements and still trying to do my tax return.

 

Next week I booked in for a full body massaged (no that's not covered by my NDIS therapy budget.)  Oh! Friday I booked in for my new wheelchair assessment! So like the rest of Australia I pay to make me dreams a reality. At a support level I needed one on one support to attend medical appointments and the NDIS is billed for my physio session.

 

So many of the choices I and other participants are making a mundane others like finding new support workers and choosing supports services and suppliers is more difficult.  Navigating the ndis hasn't been easy. Its a whole new approach to disability care to empower people with disabilities to make wise choice.  Service providers are accustom to telling us what their service are and how there programs work. Now we have a choice to sign that agreement or go elsewhere.

 

Employees hasn't changed their work practises and I am still squirming over is this the right physio for me and given up trying to contact my OT - whatever their name maybe so going with a provider to cover all therapies hasn't worked for me. A new spanner in the works is my GP won't give clearance for hydrotherapy due to poor seizure control.   

 

The thing about choice and control and the NDIS is it does not over ride natural risk management controls. A service provider still needs a doctor's clearance for some things and some people fall under the Public Trust. The NDIS has its own risk management procedures. I needed to prove I had that ability to partially self-manage.  

 

If I am using my funding too fast or too slow so my Local Area Coordinator with give me a please explain phone call.  I have a lot of feeling pressure to accept the status quo and I CC my coordinator if contracted hours are not delivered so I can argue hours were not used due to staff availability. 

 

The risk to participants was widely debate as both the registration reform was written and the roll-out timeline decided.  The legacy of the medical model of disability care and the strong need for people with disability to be protected is still very evident in the disability sector.  As Organisations, boards and staff struggle with what it means for people with disabilities to make choices about their own lives. 

 

For services is about maintaining there service in a open market and delivering a service the people with disabilities and their families want to buy. Customers or participants now have greater power when negotiating the service agreements. Participants should ensure the agreement meets the needs and not how the service will be deliver.  Something even I find over whelming at times.  

 

Many service  provides have been caught off guard and how acutely aware participants their rights and choices hey want to make.  We are now looking for value for money and we demand a better deal. 

 

In the scramble make any changes to existing supports, some people have been gives as little as three days, not aware services must provide supports until new supports are in place. The pressure to sign agreements and lock in service is high and completely over whelming, even I found myself making choices before I was ready and fully understood my purchase. 

 

Stop! Don't by the hype! Don't go with all the marketing glossly cover or the wait there's more deals.  Believe me their out there, a service survival is your money.   There is no rush - purchase a money of support form your current providers or agency. BREATH, reflect, talk to others. The reality is unless the NDIA are managing your package you can extend current agreements until your ready.  Services just don't want you to know that. You can ask for bridging agreements or interim agreements with current providers while the look at services offered by others.  I did this for the first 6 weeks.

 

Personally I have encounter this old aged approach this is what we offer take it or leave it.  The more time you take with your choices the more money the service is potentially loosing. To bad, you have the right to make that choice to ensure you get what you really want. Choosing from website and glossy flyers is difficult, why you not sure what you want or who the support staff will be.  Do the thoughts and believes match that of that staff you'll be working with.   I thought choosing a provider that offers physio/ot as a package seem the way too go.  Now I really glad that the two services are interchangeable, allow me to use up my remaining visits and potentially move on.

 

My hot tips for the week are:-

 

1. List your goals or things you want to do even it you don't think the relate to your NDIS goals. This list may assist you in choosing service providers or programs or even how to structure your own support team.
2. Don't be caught by fancy marketing. Have a plan. 
3. What a list of what you want/need in witting
4. Think about the type of staff you want to work with.
5. Whether they're are an existing service or new service tell them what you want. Rather than list to what they want to deliver.
6. Request interium agreements while you give yourself time to breath, it the NDIA are managing your package as for this as part of your package. Keep service agreements to  maximum of three months.  Don't be ticked and bullied like I was.  If it happen to me then anyone can get caught. 
7. Be guided by people know you well.  I am surprised about how much advice I am asking for my GP.  But she has known me for 20 years. Talk to other service users ask about the staff members you might be working with.
8. Know what is out there and what is possible. Not easy in the marketing jungle.  

 

Action Plan

 

1. Prepare your wish list and where you think you want to spend.
2. While waiting for you plan to be approved talk to other providers and service users even if your intending to stay put.
3. Use bridging agreements and/or short term agreements to help ensure the service is a good fit.
4. Enjoy your future.