Engaging Suppport Workers under the ndis

 Every family and participant has the right to decide . . . 

 who comes into their home and who they 

trust to support them in the community.

So your new to receiving supports for your disability or a family member. You've just recieved your ndis plan and you have x dollars to spend on direct support. Where do you start?

Choose the types of direct supports you want?

• Respite support
• Day respite support
• Day activities support
• Social support in a group
• Social support one-on-one
• Community Access Support
• In-home Support
• Job coaching/Support
• Personal Care
• Transport

If your new to being able to access supports chances are you may not know what all the different types of support are and there are supports not listed here.  In your planning meeting you would of set your goals. This is the first clue to the type of support you might like to access. Let's look at these:-

1. Respite Support: This gives a full-time carer a break from providing care for someone. This support may occur in the home allowing the care givers some time out. In a day activity centre where the person with a disability does a number of activities in a group setting or a period where the person has a home away from home, the family might take a holiday during this time.
2. Respite Care Settings/Day Centre or Group Based Activities: These are where a number of people with disabilities are supported to do things together. Things like shopping, sports, physical activities, drama, arts & crafts, life skills and social activities.
3. In-home Supports: This might include assistance with daily living tasks such as showering and dressing, meal preparation, light house work, gardening or just things you enjoy doing at home. 
4. Community Access Support: This is where an individual support worker supports one individual to do things in their local community.  Things such as getting to and from school and work, attending medical appointments, attending mainstream groups such as guides, art and crafts groups, playing sports, attending a gym, swimming, doing things of interest to you, shopping, going to have a hair cut, going to the pub, attending a wedding, visiting a theme park or national park.  Basically this includes any activity your peers would enjoy.
5. Social Support:  This may occur individually or in a group - the choice is yours.  Some participants may use their social support to improve their socal skills or make new friends.  Some might choose to attend a social activity in a group organised by a disability support agency or they might have one on one support to go on a day trip or to the markets.  A popular type of social support activity is to attend a movie or go to a football game.  Social support includes any type of activity people do for enjoyment.
6. Job Support: This is support to find a job, to get to and from work, do some work experience, or assistance looking for work.

Hopefully this gives you some ideas of the types of activities you might like support to do.  Your choice of activities will come from your ndis plan goals, such as assistance to get your child to and from school. This may involve having assistance with getting your child dressed, feeding your child breakfast and putting them on the school bus or in a taxi.

At the time of your meeting with the planner you are asked how you want your plan to be managed.  Setting up the adminstration of your plan is the first step, as you can not access a service for support until you know what you ndis budget looks like.

The three basic choices were:- 

• ndis plan managed
• Host fund provider
• Self-managed

This choice will influnece how you engage your support workers.  Within these three choices their are a number of variations and each variation will enable you to engage your support workers in different ways. Regardless of how your plan is administrated every participant can engage support workers through a Disability Support Provider. 

However if your plan is ndis managed, then the only way you can access support workers is through an ndis registered plan provider. Traditionally this means that you could not self-direct and engage your own staff. However this is no longer true. There are now ndis disability support providers who assist you to directly engage workers.  See services like Mable and Hire Up. 

If you engage a third party to manage your package you have a choice on whether that provider supplies direct support staff or a different provider.  I have previously shared the pro and cons of accessing one provider to provide all your support needs (Choosing a support service) - You may find you are able to self-direct or partially self-direct your support staff using a host funds provider. 

For those who are able to self-manage their plan there is more flexibility. You are not limited to a ndis provider for your support service, you may like to access a cleaning service to clean the house, a home maintenance service and a food preparation company to cook.  Some people like the simplicity of having workers who can support them to do all tasks, while other engage workers that are skilled in specific areas.  It very much depends on your support needs and lifestyle. 

I personally work best with people who have a creative interest. They do not need to be artists like myself, they might show their creativity in other ways such as gardening. I find workers who do not share a creative interest do not enjoy working with me as much as workers who are creative.

So now you need to start thinking about the type of person who you would enjoy working with.  If you are wanting a support worker to support you to go swimming, you don't want a coach potato or someone who can't swim.  The coach poato might be great to go to the movies or the pub or even to do arts and craft. This is where deciding if you want a support worker for a specfic task or you want general workers to support you in a numbers of ways.

Regardless of how you access support from a support worker or a carer you will find that some support workers are selective with the type of supports they provide. (This occurs both with disability support organisations and workers you may seek to directly engage or employ). For example some support staff will not assist with personal care or transport you in their car. So you need to be very specific about the type of support you're seeking and the tasks required.  Some people will agree to anything, hoping to persuade you to do what they want to do later.

If you are self-directing your own supports you will need to develop job description(s). Some people like their workers to do all the roles or tasks they require, while other participants seek support workers to support with a particular part of their plan.

I also partially self-manage my own plan.  I engage support workers through an online platform that links participants and support workers, then they negotiate an arrangement between themselves. The workers are officially employed by this ndis registered organisation, so no matter how your plan is managed you change choose your own support team and effectively be self-directing or directing for a family member.

I have one key worker who assist me with self managing a team and looks after the roster, another member of the team looks after all the team training and updating my support plan and induction guide.  My key worker also assists me in recruiting new team members and management of all my ndis supports.  Although I can do this phone calls are diffcult due to my speech impairment.  It is quicker and easier to have her negotiate all my service agreements for me to approve and sign.

Other participants have support workers who just assist them in the home and then a team of workers who assist them to do different activities in the community.  You need to consider your lifestyle and your needs when you select how to structure your support team.  You can also ask for assistance to organise your supports in your plan.

At this stage you need to begin to develop a detailed support plan that spells out all your support needs, your expectations of support workers, an explanation of all tasks required, including descriptions and any specialised plans the support workers are required to follow, such as your personal care routine, medical emergency response plans and behaviour management plans.  If you have a supports coordinator or a coordinator through the disability support agency you have a service agreement with they will either write your support plan or work with you to write the plan.

For those who are self-directing through an agency, you will be able to access their templates to write your support plan.   These support plans form part of the service agreement or employment agreement you and the other party sign.  These are legally binding documents that all workers must follow.  They are not negotiable by individual workers, they are not guidelines and they certainly are not suggestions of how a worker provides supports.  If the unfortunate happens and an incident arises, if plans have not been followed workers may find the cannot claim work cover or sue in event of injury.

On that note if you are directly employing your own support team as an employer you are responsible to insure your own staff and ensure all entitlements are paid.  You can check these with employers services and the award.  The other way to directly engage workers is to pay or contract support workers who are self-employed and are responsible for their own insurances and taxation requirements.

Just an overview of how support workers can be engaged or employed:-

• Employed by a disability support organsiation that is ndis registered. A list of these are on the ndis website or you can ask your Local Area Coordinator to assist. 
• Work for an agency that supplies support staff to participants who are self-directing. 
• Work with a self-directing service to set up your own model for self-directing and engaging support staff.
• Employ support workers who are self-employed (have an ABN)
• Set-up your own service to employ your staff.  (apply for an ABN)

Another option that I have used is to engaged a number of different staff through different providers. This gives you more options and a wider pool to select your workers from.  Remember you have the right to withdraw from a service agreement, as long as you follow the terms for withdrawal in the service agreement. 

I have previously written blog posts explaining the purpose of service agreements, what they should contain and your rights. see Planning your ndis pathways.

So to find the right worker for you, you need:

1. A list of required supports.
2. How you will engage your support workers
3. Service agreement(s) or prepared employment agreements
4. A support plan
5. Job description(s)
6. Induction plan and/or staff training manuals 
7. A list of skills and qualities you are looking for in a support worker. (If you are advertising for a support worker or using a recuriment agency, include these in the advertisement)

The journey begins . . . 

Here are some tools

Things to include in your support plan

• Information about you (or the participants)- what daily life looks like, the activities you engage in, and your hobbies and interests including family members and emergency contacts.
• Information on your (or participants) disability and health conditions that will assist workers to deliver quality support.
• A skills audit - Something that clearly states where you (or the participant) can do or can't do and how support is needed. Some things I include are mobility, communication, medical summary, epilepsy support plan, emergency response plans, tasks list for in-home support, personal care plan and procedures, guidelines for community access.)
• Staff team culture
• Induction plan
• Training requirements.  

The clearer this can be, the less room for applicants to misunderstand the requirements and responsibilities of their role.  Signing and employment agreement means agreeing to follow the support plan.  My experience is staff interpret this document to suit themselves so the person responsible for coordinating supports needs to be firm.

Writing a Job Description

This will be needed if you are recruiting your own team members or placing a job on an online platform. When I began self-directing my own team I used a recruitment agency. I find there are loads of people looking for support work, particually students needing causal work. However, you want to ensure this person is a good fit for you or the participants needs and lifestyle!

Include a job title.  I intitally advertised for two postitions a Key Support Worker and a casual worker.  I found in being flexible in my recuriting I altered the job descriptions I offered to the successfully candidates.  Posting a 'job' on an online platform is a bit different as some of the screening is done for you.  Such as police and reference checks.  (Oh I never give out my address until I am sure I want this person in my home. It's find it good to meet the person in a park or library.)

I like to do my meet and greets in the community at The Retro Diner.  As I provide artwork for the diners walls.  It enbles the interested party to see the level of my artwork and veiw me in a working enviroment.

So you need to include:

• Job title
• Summary of duties
• Something about the type of person your looking for
• Any requirements such as a blue and yellow card, qualifications, 2 referees and a willingness to drive your own car. 
• I include I have a cat at work so workers with an allergy to cats are not suited to working with me.

 Something I might put on a online platform, or I even used successfully on Facebook is:

Crazy art loving cat women seeks casual support workers to complete her current support team.  To be suitable you need to be flexible with your work hours and have great availablity.  This postition will include work after 5 pm and on the weekends. 

I require assistance with housework, personal care, meal preparation, my physio program, shopping and growing my visual arts practise.  If you a crazy and love to laugh while your working; and can prove to me your loyal and reliable then message me to discuss my needs futher.  

Someone with a sense of homour or witty in important to me as I am a true larkin'. If this was a job add I be a lot more descriptived in the personal qualities I looking for.  I looking for someone who wants to get the job done and empower me to achieve my ndis goals, not take me out for coffee.  Although occasionally I like to do that to.   I have plenty of friends and I don't pay them buy the hour get me out the house. 

What is a service agreement?

Put simply it is an agreement or contract between you and the organisation or person you are engaging to provide your support. It states the specfic supports that will be provided and the costs of those supports (quote).  It outlines their responsibilites to you and your responsibilites to them for an agreed period of time.  It should also spell out the terms for seazing the agreement before the due date.

Although the agreement can be reviewed at anytime at the request of either party or termeniated imediately if either party acts concere to the terms and conditions. You do not need to have a 12 month agreement, it can be for any period of time and if you are new to recieving support I would recommend a short period between 8 to 12 weeks.

Building Capacity and the NDIS

One of the things I am invested in is building capacity of communities, presently my focus is on the Ipswich arts community and ensuring artists with disabilities are includes in the visual arts at grassroots level.  I love to say being an arts worker combines my two passions - art and advocating for all those living with disabilities, including families.  So naturally this will be incorporated into my personal ndis goals.

This week I sat down with part of team Deb to refresh the team on my goals and how they might look for my next plan.  I already know they will look very different, as I am a different person to 'who I was when I transitioned to the ndis.  For one thing I am fitter, stronger and healthier! 

My major goal for the last two years has been to have a solo art exhibition outside the boundaries of Ipswich.  On the 24th February I achieved that goal.  This is a huge undertaking for any emerging artist and a financial risk,  needing to use my wheelchair for fatigue takes the courage needed to the next level.  An artist lives with the critics, when it comes to art everybody is a critic.  What has happened that should not be happening is workers in the disability sector questioning my goals and implying I am bound to fail.

So what?  Failure is part of the human condition and nothing creates a more fertile ground for learning. I do push myself and between you and me - that is the secret to success! 

How I see success is very different to the rest of the world.  Success is not money, but the legacy I leave after I am gone.  The National Disability Insurance Scheme is primarily about assistance to participate in society.  Belonging is a basic human right that the ndis seeks to correct.  But what do we belong to!

Surprisingly not all my support workers knew my ndis goals, despite them being clearly written in my Team Induction Guide.  Some support workers see every participant's goal is to improve social skills and interaction.  Some of my workers in the past have thought taking me for coffee assisted me in this area.  Can I share something . . . this is not one of my needs.  I could have coffee with a different friend for the next 50 days plus . . . if I choose too.

Turning 50 with friends

Under the ndis that is not the point!  The point is CHOICE! What I do and with who is for me to decide not someone I employ to assist me.  People with disabilities and their families now have a choice on -

• How they want to be supported
• Who they want to support them (service providers or employing their own workers)
• Who they want to work directly with
• When they want that support

How participants engage in their communities will be different. Not many participants will choose to be a artist seeking to have artwork purchase by the Australian Art Bank and many do not know this is where galleries hire some of their exhibitions from.  This is my long term goal - the ultimate.  So short term I like the Ipswich Gallery to purchase my work or to host an exhibition by me.

So having a Chi latte with a worker I am irritated with is not how I want to socialise.  In my opinion these workers are wasting my time and I am paying them to do that!

The word 'participant' implies a person is actively engaged in a activity or program.  Going to the local shopping centre is not a social activity for most people -  I might enjoy that with my sister or a friend.  Other than that I send people to do that for me - and that is how I exercise my choice.  If you are a participant that might be the thing you most love to do. I think that's the coolest thing about the ndis - we as individuals get to do what we love doing, rather than 'following the leader!'

This will only continue if participants exercise their right to choose and speak up when they're not happy with a decision made by the ndis, a service or a support worker.  In the business world we say 'the customer is always right'.  When it comes to the ndis you are a customer. 

However community living is more than service providers, families and participants.  It is the neighborhood in which we live, work and play. Sadly for many of those living with disabilities neighborhoods are often not accessible.  Here is where the ndis should be assisting but too often adds a barrier for us to overcome.  For the scheme to work community organizations and government workers need to work with communities to highlight barriers for people living with disabilities and explore ways the community can become accessible. 

This ramp has sat mostly unused for the last 5 years.  Today I dropped it off at Limestone Emporium.  The owners face just lit up that her shop became accessible to young mums part of her target market. (and me with a sore foot at present - these days I waltz in!) If we're honest access effects everyone in the community.  Just ask Ipswich artist who are trying to enter the art awards today and the council website crashed - you can't be connected, try again later. 

For someone with a disability connecting is a daily occurrence.  Just as I helped my friend connect with her customers today, we need to walk alongside those struggling to connect to the community.  It isn't our problem and it isn't the community's problem, it is a human problem! 

When we limit ourselves, we limit others

and that takes away the choices of others.

March 25 is world CP day

I may have Cerebral Palsy

But CP does not have me!

Before I go I'd like to acknowledge BEMAC for investing in me and my art practise. This investment will support Mieke Den Otter and myself to demonstrate to local Kindergarten children that creating artwork is work. 

Thank you

The Role the NDIS Plays

One of the roles of the NDIS is to assist individuals and families living with disabilities to access and participate in community life. I am an author, visual artist and disability advocate.  My current NDIS goals are to extend my visual art practise and build in roads for inclusion in the local art community.

In addition to navigating the NDIS 'red tape, traps and pot holes', I face many physical and attitudinal barriers in presenting my artwork to my intended audience.  

A specific goal for 2018/19 was to host a solo art exhibition in Brisbane this is a huge undertaking.  Art galleries tend to be older buildings with poor access, but I never let a few steps get in the way and my recent exhibition at Greaser Gallery was no exception. However I am not confined to my wheelchair and can manage with assistance to climb a few stairs. 

Greaser Gallery website assures interested parties it is accessible - this was not my experience.  Although the space has some access plus' if you experience a sensory disability or behavioural disability. 

Low lighting and the freedom to use the sound system to play music would make it a 'safe' environment for someone on the autism spectrum.  However even using the back entrance meant I needed to negotiate one step.  This is easily overcome by the use of a small portable ramp.  When we discuss access we are usually referring to 'physical features' of venues.  i.e. Do they have a toilet I can access. In Greaser's case 'no'.

As I work with other artists the major access issues they encounter are:-

1. Affordable accessible transport
2. Affordable venue space
3. Attitudinal barriers

Greaser hits the mark on all three of these issues, assuming the artist is able to access the train.  The location of venues can often prove more of an access issue then the physical appearance of a building. Many people with disabilities are reliant on taxis which often make accessing the community unaffordable or totally exhausting. Added to this is their work is often undervalued by those who represent them or their audience meaning their profit margins are lower than their peers. 

The space at Greaser Gallery current fees and their commissions are very low making their Gallery affordable to emerging artists.  Pricing on Brisbane Galleries revealed they are on average four times the cost of Ipswich and almost always, their commissions were higher.  

I found the Greaser staff lovely to work with, respectable and very encouraging.  As a visual artist I have the advantage of letting my work speak for itself.  My disability is only discovered after my artwork is accepted.  . . . Unless I need to make contact by phone.

This is where my ndis plan comes into play by addressing my individual access needs.  My key support worker acts as my PA and makes most of my work calls on my behalf and does a lot of my leg work so I can focus on producing artwork. 

Difficulties accessing the arts can occur way before the artist submits a proposal.  Even in the production process and accessing resources artists with disabilities are at significant disadvantage. Few have the ability or technology to research the art gallery market and many who are dependent on others - such as support staff are limited.  Few workers are serious about empowering participants to be part of the art community and they often play a significant role in artwork being under valued.  Some artists who are part of a studio run by support studios are not paid and do not own their own work. 

The creative work in producing an art piece has no value attached if it is produced as part of a day respite program.  I suggest these artists seek out supported art studios, which are staffed by quality art support workers who assist in promoting both the artists and their work.  Artists living with disabilities should seek the advice of their state peak body.  In Queensland that is Access Arts. 

Was honoured to have Pat Swell support my 

recent exhibition.  Pat is the CEO of Access Arts

here in Queensland and a fellow champion

for inclusion in the arts.

So many businesses and organisations only scratch the surface in addressing access issues for people with disability.  If the business community were to get serious about disability access then they would develop a Disability Action Plan.  This identifies the access issues their services present for those living with disability and outlines a plan to address each barrier over a period of time. The plan must also include a commitment to disability awareness training for all members of staff.  Due to costs that could be a 10 year plan or even a living document, this at least demonstrates a willingness to participate in building an inclusive community.

In the absence of disability action plans, there is no commitment to partnering with the NDIS to increase the social and economic participation of people living with disabilities. Many working in the disability sector itself have much to learn about empowering people to make their own choices and not letting their own prejudices and fears limit those they work with. 

My NDIS plan has played a major role to achieve my ambitions, art goals and contributing to social inclusion in roads in the Ipswich Art community. 

Arts Connect Ipswich

recipient of 

2019 Event of the Year

Australia Day Award 

Having YOUR Voice

art exhibition by artists with disabilities.

Reaching my ndis goals

Opening Night at Greaser Art Gallery

My name is Deb Chilton and I am a published author and poet and visual artist. On Sunday the 24th February I hosted my first Brisbane solo art exhibition.

With Pat Swell, the CEO of Access Arts

Every participants plan under the ndis is based on their personal or their family's goals.  Funding should not be about a person's disability nor directly related to their disability. Rather it is a plan to enable an individual or family to develop the life they want to live. So the participants goals should reflect, where they want to live and whom they want to live with, in most cases that will be the participants family, however there are some individuals who choose to live on their own or with friends. 

My home doubles as my art studio

My ndis goals are around extending my visual arts practise and building my audience. I am also invested in community inclusion and building a diverse arts community in Ipswich.  I achieve this through working with the local art community and some of my artwork explores my own thoughts on what that community should look like.

I also have goals around being independent and remaining safe and confident in the lifestyle I live.  Choice and choosing how you as a participant want to be supported is a key reform in the ndis.  My support needs are unique to my disabilities and I only require individual one on one support, some equipment and supports around enhancing my daily living to participate in the community. 

One of my physio hit outs

For me I achieve this through a range of therapies to keep me fit and active. Prior to the ndis I found being supported by traditional support services limiting and I wasn't able to utilise my support hours in the way I wanted. This has been the most significant change for me under the ndis and I now direct my own support team.  For me this means sourcing the people who I feel are best able to support me, choosing how my staff will be engaged,  organising my own roster.

With my support team meeting guess at my art exhibition

The ndis allows family and participants to choose how and who administrates their ndis package on their behalf. As I am self-employed and run a small business I was able to choose to partly self-manage my own plan and funding.  I have my key support worker assist me in this role.  My speech is a major communication barrier so my key worker makes most of my phone calls either with me or on my behalf.

The ndis should provide all participants and their families with more choices and flexibility, however my experience is you need to voice what you want constantly and sadly many traditional providers just want to work with every participant in the same way. This is not how the ndis was designed to function and you shouldn't be bullied into doing things the way services want. However my experience is it's a lot less energy to just go with the flow and my ideals are wavering. 

Engaging my own support workers, though platforms like Hire Up and individual contracts has given me the flexibility I needed to take my art practise to the next level. Most services operate during the week, however the majority of art activities I engage in are after hours. Transport has always been and still is a major access issue for myself and others with disabilities. With limited means of transport and the costs, people with disabilities still have limits placed on the activities they choose,  I am very blessed to have support staff who are flexible to make my work schedules work.

Spider Web Block Print

My major ndis goal to have my first solo exhibition in Brisbane was only possible because I stepped away from the traditional support services and the generosity of support staff who were willing to work outside the box. 

I am passionate about making this a reality for others in the years ahead.  The ndis may be new but there are many things about the ndis that need to be fixed and better funded.  I hope this post gives you and your family the courage to build the life you want to live.

ndis Living Better?

I think its fair to say the ndis has seen all of us face challenges. Whether your a parent, a participant, a support worker, a disability support provider, ndis employee or a member of the general public. The creation of the ndis was designed to create a better way of living for participants and their families. However there are still many challenges to overcome in accessing this new system; improving access for people with disabilities, promoting better inclusion, community awareness and achieving better outcomes in the lives of those living with disabilities. 

From the out set the ndis was to be a scheme that would benefit all Australians, by moving to a society and therefore a community that was inclusive of people with disabilities and their families.  Ideally the ndis should provide participants with the same opportunities as other members of our community.  Clearly, we're not there yet. When I was preparing for the introduction of the ndis and sharing my insight, I often said that the ndis was the prefect opportunity to try new things, I still believe this to be the case.

This week the ndis allowed me to try something new, through my enhanced daily living package.  This part of my plan is about living my best life.  For me I do not want to be sitting on a coach or moving into a nursing home at 60. I am still hoping some of my best days are ahead of me.  If you or a family member are a participant in the ndis then this should be a goal for your life too.

After a rough end to last week I have come out punching.  My physio is always looking for new ways to challenge me and keep me entertained. My physio got me to put on my boxing gloves. At some level I think every participant should be challenged. So lets get fair dinkum here, most Aussies like to take the easy way out - 'It's too hard.' and some days that is true for me too. 

The ndis plan is powered by the participants goals or in some cases the families goals.  Ok not every participant is going to choose to see a physio and not every participant needs that type of support.  The ndis is about being supported your way to do the activities and things you choose.  I have no intention on taking up bird watching so I am not expecting many participants to join me in the ring, 

For a small number of participants the plan is about quality of life and how to make life better for the family.  In these cases we're looking at respite care or day activities so other family members can resume their lives and even look for work.  In the main the ndis was created to increase the ability of participants to join in the activities that their community has to offer.  This includes things such as education, employment, festivals, sports and arts n craft.  

For many years one of my support goals was to have meaningful interaction in the community.  My current partnership with Angie the owner of The Retro Diner in Brisbane St, Ipswich is the perfect example of what I mean by meaningful interaction.  Not only do I really enjoy hanging out at The Retro Diner, the owner has given me the opportunity to have my art on public display.  She believes my 'pop art' sits well on the walls and I sell my range of giftware at The Diner as well.

I am not going out into the community, simply to 'get out of the house'.  I have a purpose and a reason to get out of bed in the morning.  It was hoped that the ndis would provide many opportunities for individuals to do this.  For ndis to succeed we all need to change the way we see individuals with disabilities.  We now need to view them as co-contributors in the community.

Most people with disabilities have a positive outlook on life and wear a smile.  I don't know about you but I find a smile contagious to be around.  The joy that these people can bring to a room or restaurant can lift the atmosphere.  Sadly many families living with disabilities don't feel welcomed in cafes and restaurant's, because others are uncomfortable with 'behaviours' or eateries are not physically accessibly.  The role of the ndis is not just to assist individuals to be involved in community life, but also assist the community to embrace people with disabilities. Assisting in building inclusive communities is one of the driving forces behind my art practise. 

Art speaks all languages and brings together people from all areas of life.  'Having You Voice'; the 2018 Australia Day Award for Ipswich Event of the year, achieved this.  Each of the artworks was produced by individuals and groups with disabilities.  The event was attended by politicians, community promoters, those who worked in the disability sector, those who worked in the art sector, artists and the artists who created this incredible body of work.  One of the art directors, from the main gallery remarked, 'I don't get this many people to attend my openings in the main gallery'.

  

This is a testimony to the tireless work of members of Ipswich Arts Connect, a group that embraces everyone and promotes the work of all members.  There are a number of artists living with disabilities who 'belong' to arts connect and participate in many group exhibitions.  This is what social inclusion looks like, 'belong' in every sense of the word.  Learning, working, producing and promoting visual arts (creating and performing) together. 

When we think about what a better life for people with disabilities might look like 'Arts Connect Inc, Ipswich'.  To achieve what Arts Connect has in Ipswich and embrace the ndis we need to challenge our own perceptions and beliefs that restrict the growth and participation of people living with disabilities.  These individuals are not 'DISABLED'.  Many are very talented and thinkers who can assist in the ndis transition if we let go of the medical model of disabilities.  The medical model implies all people with disabilities need care and need to be under the watch of a 'responsible' person. 

Many people who come through my front door to offer support are shocked to find I do not have a carer or have 24 hour support. Some believe my 'working life' exists in my imagination and humour me. The ndis has allowed me to take control and engage support workers who work 'in the background' to enable me to achieve my ndis goals. This month that goal is to have an exhibition in Brisbane.  18 months of slogging away, in the same way all members of Arts Connect my art is almost ready to hang on the wall of Greaser Art Gallery here's the invite. . . 

Moving forward I hope to witness more families and participants setting their goals and being empowered to take a more active role in deciding how they want to be supported; what services they access; choosing support staff that share their interests and support them to achieve their own goals.  I would love to see more participants being able to choose when they have their individual supports most art exhibitions occur after 6 pm.  There was a time in my life I wasn't able to access support on a Sunday.  Before the ndis my Transformations exhibition would not be possible. 

Even now some workers on the Hire Up platform find it difficult that I am inflexible at what time I arrive at an art group or even church. I struggle to explain to close minded people why just like my peers I want to be on time to events.  Workers telling me the times they will work is a thing of the past.  If they can't work the hours I need, then they are not able to do that particular shift.  Just as I struggle with workers inflexibility I too struggle with  my determination to self-direct. 

I hope we will overcome the current challenges the ndis presents and all those living with disabilities can embrace a better way of living. 

Road blocks under the ndis

Having YOUR Voice 

2019 Australia Day Awards (Ipswich)

Event of the Year

Under the National Disability Insurance Scheme participants and their families should be in the drivers seat, in terms of directing how they want to be supported.  The NDIS journey is different for everyone and everyone to some degree is encountering road blocks and challenges.  My own journey has been no different and in one way you would expect this from a system that is untried. 

Some days its hard to remember that the scheme is still developing, when your watching your child or parent struggle or you're sitting in a wheelchair that needs replacing or your trying to find the right service provider; or only one of your three children with ASD is funded by the ndis.  Life with disability is constantly challenging and those who live with disability deal with access issues everyday.  

Inclusion Is but A Dream

Driving with one footplate

Every day is a reminder society was not designed to accommodate us.  Sadly, there are some members of the public that remind us of this, you should be locked in an institution. Who says that to people in 2019?  Many days social inclusion seems but a dream. 

With that as a back drop, we have transitioned from one model of disability care that was critically funded to a new system that was designed to empower people living with disabilities. Regular readers will know things have not gone according to plan.  Access to reliable information has been difficult and even the original ndis website was inaccessible.  A new website design was recently launch, so if you haven't done so you should check it out. 

I have highlighted many times my travel along the ndis road and being empowered to make your own choices is dependent on:

1. Access to information and;
2. Communication.

Regardless of how your plan is being managed you have the right to choose the service providers you access. This is not the decision of a host provider or plan manager.  These support services may offer suggestions and information on services provided in your area (information) as can your LAC (local area coordinator).  You may also find a google search helpful.  However my own journey has shown this is only part of the information you need to make choices around your supports. 

When you discuss your plan with existing support services, support coordinators or new support services you're considering, the information they're going to provide is:

• This is who we are
• This is what we offer
• These are our fees and charges (it is now law these are provided to you before signing an agreement)
• A service agreement that states:

          a) The period of agreement

          b) Descriptor of the service(s) to be accessed

          c) Fees and charges

          d) Agreed no. hours for each service

          e) Full quote for those hours (A total)

          f) Any out of pocket expenses

          g) The services responsibilities

          h) Your responsibilities

** A footnote: Participants should receive a copy of all invoices.  I know many I do not see. 

Even if you reach this stage of information that is provided you do not need to go ahead or you can ask for changes.  I do it often.  If you are unsure about the service agreement you can take or send a copy to your LAC to have it explained to you.  Not to be provided with a copy is illegal, whether a service thinks you can understand it or not. 

Buyer beware - you still do not have the whole picture.  The service agreement does not tell you if the service will support your goals; how many staff they have; if your goals and needs can be meet; and thus if this is the right service for you and your family.  So you need to ask:

• How the service will support your ndis goals?
• Do they offer any flexibility in service provision to better suit your ndis goals?
• Staff availability?
• Do they currently have trouble filling rosters and if so what is their bank up plan, will they use agency staff and how might this impact your service(s)

These are some of the many questions I wished I asked when considering service providers and signing service agreements.  I found many are happy to tell you what they think you want to know.

So you still do not have all the information you may need to make your informed choice.

• Ask other participants
• Join facebook forums
• Google for reviews.

Last week I found myself sitting in my six year old wheelchair whose footplate constantly needing replacing with a NO ENTRY sign in front of me.  Simply because of a lack of communication.  The ndia had knock back my new chair application in June 2018. I was told that all that was needed was more information - not it was a flat 'no'. 

After further questioning I found the ndia needed two new quotes and more information. Believing that to be the case I attempted to contact my physio, relaying the message that the ndia was trying to make contacted with her.  She assured me she had obtained a new quote, so I waited,

I heard nothing, even when I lodged an incident report involving the urgent repair to my chair for safety reasons.  Whoever uploaded the document should of seen my application was declined - nothing.

Finding last week I woke up Monday morning determine to find out where my review process was at, hoping it was just not sitting idle in the system somewhere.  I also contacted my LAC, who sent out emails in search for answer.  I had given the ndia until Thursday before contacting my MP.

Friday I finally got a phone call.  The ndia would never consider paying that much for a wheelchair.  Why I had to wait 7 months to be told that and my physio never passed that information on, I will never understand.

So I said to the man on the other end of the phone, I have nothing to lose by changing providers?

He believed that to be the case. I was able to give him the details of my new provider and consent to forward my file, previous application and request for additional information. 

This action took 30 minutes on the phone and now sits in my portal ready to action tomorrow.  I have already requested the first available appointment with my OT to review my assessment for the chair and discuss new information required.  Which my current physio has offered to assist with.

I then emailed my LAC with a update and request for budget review so I could complete the requirements.  She was horrified and asked I send her copies of everything when I had it and she would do everything to fast track the application.  She assumes a provider will let me see a copy, yet alone have a copy.

Service providers are still not being transparent with the information or billing the provide to the ndis.  This is about me, this affects my daily living and the choices I make.  Down to the art galleries and studio spaces I use for my art practice, I have a right to be informed every time my application progresses in the cue.  I should not have to threaten to go to a MP before receiving information about me.  This is not good enough!

Application for assisted technology for this price is the only part of my ndis plan I have no say in as I self-manage my plan.  Thus it is not my responsibility to chase things up.  I am paying physios and OTs to do that on my behalf - clearly the chain of communication in this area of my plan have stopped.

So if you've not heard anything for a while ASK! And ask until you get answers!

Ultimately I believe this road block occurred due to lack of information provided when I signed my service agreement.  Poor communication between me and the therapist prescribing the wheelchair and then no communication unless it was at my request.

The two keys to empower participants to make informed decisions about their choice for support. Had I known the service provider only had one physio for both the aged care clients and younger people with disabilities in Ipswich, Locker Valley, Toowoomba and out to Boonah,  I might of been less reluctant to sign the service agreement.

I soon realised the physio often she came or called after hours and often wrote reports in her own time because service agreements were out of date.  This service failed both me and their staff.

Services are happy to blame the ndis and lack of funding for poor service provision, however most of the road blocks I've had to unlock are due to poor information and lack of communication by providers.  The National Disability Insurance Agency can't be held responsible for that.

If you remember the backdrop I provided at the start of my post.  Participants and families are now adding this stress to the stress of living in a society designed to accommodate them.  Many support workers question why I seemed stress when my needs are being met.

Well today the answer is: somewhere between working part-time, running a small business, preparing for a solo exhibition, addressing my medical needs (about 3 appointments a week) and self-managing my plan (oh plus the admin I do for Disability Community Awareness and my blog) I now need to find the time to fit in completing my wheelchair application. Really there are only 24 hours in a day.

So forgive me if there is a day or two I feel like its all too much.  To the state and federal governments I said, funding and fixing the ndis is a nation priority!