Sharing Stories and the ndis

The National Disability Insurance Scheme assist people living with disabilities and their families to participate in life.  The ndis is about enabling people to live their best lives not just existing. However as the ndis rolls out their is still confusion on how the scheme works, how to access the scheme and everyday logistics. 

First and foremost the ndis is a scheme of all Australians ensuring we all have equal access to every area of the community, this includes education, work, social participation program, housing, sports and recreation; and arts and entertainment.  Disability alone should not prevent someone from participating in these areas. 

Australians living with disability face many access barriers in the community.  Access is not just physical access to buildings, sporting venues and national parks, but barriers in the way we learn, access information, communicate with each other, social conduct rules and general community attitudes.  Disability occurs when someone experiences an impairment that prevents them from accessing the community in the normal way. It is not a person's impairment that prevents them from accessing the community,  but the way of society is structured. 

For someone living with a behavioural or sensory disability, access barriers are crowds, noises, lights and the business of our culture and community life.  Social norms and eidetic also make it difficult for these people to part-take in everyday activities. 

It is the role of the ndis to address these access issues for individuals and families living with disability and the community as a whole. This is achieve through delivering or funding services and equipment.  In my case that is providing a wheelchair and repairs to keep me out and about. For a family with a child or children with Autism, it is early intervention programs and finding the best environment for them to learn so they can access the education system.

In the past lack of access to the mainstream education system, has limited economic opportunities for those with disabilities.  Lack of education limits opportunities to many areas in the community, including employment and income to enjoy sports & leisured; and arts and entertainment.   This includes opportunities like travel due to lower income. 

As someone who has access to the ndis for over 12 months, my story and how I set up my plan, support team and providers can assist others who are about to have their planning meeting and those setting up their supports so they can achieve their goals and fully participate in the community.  Sharing my story also gives information on disability and the ndis to the general community.  

One of my personal ndis goals is to assist the Ipswich arts community to become inclusive.  So sharing my experience through my blog is the first way to achieve this.  My hands shake to much to take photos, so my support workers assist me in achieving this goal by taking photos.  I can then edit and upload them to the blog. 

The ndis is just about supporting people with their everyday living tasks, but engaging in the community in meaningful ways.  An example of this may be voluntary work.  So when you preparing to met with your ndis planner resist the opportunity to present a shopping list of supports you want and make your planning meeting about you or your child; your family life; the things you or your family want to do;  make your planning meeting about living your best life. 

The individual plan developed by the ndis for you and your child will be built around the goals you share with your planner.  The of term goal as the things you want to do.  For a family living with disability that might be to be supported to go on holidays as a family.  To achieve this that might me funds to hire equipment when you arrive at your holiday accommodation and accessing support for the person with the disability. 

My Name is Deb and I am an artist living with disability, 

and this is my story. 

Accessing the ndis supports me to cross the access barriers I encounter as a result of my impairments. I was born with cerebral palsy with is a physical disability that effects my mobility, hand movements and speech.  However with family support and access to therapy as a child I have lived an active life in the community.

My ndis goals center around self-managing my plan and support team; engaging in the community as a artists and extending my art practise; maintaining my independence and having a meaningful role in the community.

I live independently in my department of housing unit, where I work from my home art studio and office.  In addition to being an artist I am also a freelance arts worker who seeks to assist in the social inclusion of people with disabilities in the arts industry. 

My ndis plan enables me to achieve this through in home and community support. In the past I was given no choice on the services I could access.  As a artist who is very active in the local arts community traditional service providers could not provide my support needs, so I am now self directing my own support team and enjoying life like never before.

Self-directing my own teams means I can recruit my own workers, train my own workers and organize my support team around my work and social commitments.  There are many different ways you can engage you staff team. Including using online platforms to find the right workers for you and your lifestyle, and booking a service thought that platform. 

There are support service providers that offer self-directing services that can assist you with finding staff, training them and payment of wages and entitlements.  The provide I access offered a number of different packages, depending on what areas you feel you need assistance.

You can also chose to set up you own business to hire your support team or hirer support workers who are self-employed.  I recommend to seek advice on your legal obligations before embarking on engaging your own workers.  However don't let the big guys in town tell you that its unsafe or too difficult.

It is important to note that self-managing your plan and self-directing your plan are two different things.  Not everyone can chose to self-direct. For example if the ndia or a broker is administering your plan on your behalf. 

In terms of administration of you plan, their are options that offer you different levels of self-managing.  Your have the option to engage a supports coorindator who can assist you to set up supports or a plan manager who assist you with establishing your budget, payment of invoices and staff and reporting back to the ndis. When it comes to self management you can pick and chose what areas of your plan you manage. 

When I transferred to the state funded system to the ndis I was assigned a planner to assist me to develop my ndis plan.  When I meet my planner I was pretty clear on who I needed my supports to look.  In terms of supports other than my direct one on one support, I wanted to access some new mobility equipment, some assisted technology and physio therapy. 

I really believe preparing for my meeting and being firm on what my goals were, assist me to get a plan that has had a positive impact on my life.  The ndis is not prefect and I am still struggling with aspects of my plan and making it a reality, but knowing the outcomes I wanted has assisted. 

For those who have previously received support the shift towards choosing your outcomes and then developing your ndis plan with your Local Area Coordinator is the most significant change.  Like everything in life their are good and dad LACs.  However the can only go on the information you provide.  If you don't think they gleam that through their questions give them the information anyway. If you do not feel heard by your LAC make a compliant, the ndis is designed to enable you to chose how you are supported.  Do be realistic, the not going to give you a new car or pay for a holiday.

Your ndis is about you the participant or your child.  Not disability and not the services you want to access.  When you are planning make it about what you want to do and how you can maximized your independence and participation in the community. 

Your goals can be around:

• independence in the community,
• education, training or daily living skills, learning knew things,
• accommodation - where you live.
• relationships, friendship and developing a next work in the community.
• work and community life
• hobbies and interests
• dreams and aspirations.

The ndis will also want to know how you want to achieve these things.  Not asking CPL to provide your personal care.  Rather whether you are seeking individual support or center based support. They will also ask about your current supports networks.  Paint a realistic picture, not I manage pretty well.  Tell them about your day to day struggles. 

Once you have your plan you then need to decide who will provide your supports.  If your plan is to find a job, then Endeavour Enterprises might be worth looking at.  Regardless of what support services you have accessed in the past, you want to find a provider who supports your goals not you fitting into their programs.  This is the stuff I found most confusing, services told me what I wanted to hear. 

Do not be pressured into agreements, ask for intermine agreements or short term agreements. Talk to other participants and ask for assistance.  As your parents or a friend to seek out information for you.  At the end of the day if you want to do things how you've always done them, then that a great choice to make.  Just remember you have the right to change your mine.

I hope sharing my stories has provided some insights for you. Please feel free and flick me questions.  Most important of all is share your stories and experiences with ndis with others.  Together we can make ndis work for all.