Xmas Spirit – An Open Letter to the NDIS

Dear NDIS People and Partners

Image is of a cartoon Santa. He is smoking a cigar and holding a sign that says Bad Santa

Merry Xmas NDIS people. I wish you all good tidings of Xmas and the new year. I wish this open letter to you all could be in better spirit. Alas, the NDIS seems to be lacking in Xmas spirit at the moment if recent decisions are anything to go by. In fact, the NDIS seems to be lacking in any spirit at all in its hell bent quest to cut costs.

I would like to tell you a story. You see, I once worked as a Senior Local Area Coordinator. For a time I was even a Senior Planner within the NDIS on a short term contract. I like to think that I was a very good planner. Since leaving the NDIS I have been very outspoken about ongoing failures of the NDIS. So much I that I fear I have been blacklisted, never to be employed again.

I started in 2016. I was employed as part of the second roll-out to the North East Metro area of Victoria. It was an interesting time because the NDIS screwed up a change over of their CRM system. Full records of participants did not transfer over to the new system. It was chaotic as no one knew what funding was left. Services could not be booked, let alone paid. Indeed the crisis was so bad that some services closed down because they could not generate any cashflow to pay themselves and staff.

The crisis lasted about 8 weeks. Eventually things returned to normal and we began planning. As a newbie it was a sharp learning curve. Not only was it a sharp learning curve for me as a worker in a partner organisation, it was a sharp learning curve for people that worked in the NDIA offices too. Many of us were new to the NDIS and had to learn the rules and legislations of the NDIS very quickly.

For a time we even shared offices with delegates from the NDIA. It was great because we could sit down with them and talk about plans and client needs. We could explore the legislation together and discuss Section 34 and how it applied to decision making. All of us had a copy of section 34 on our desk, it was our bible.

My second ever plan is still my favourite. She was a young woman studying to get into the medical field. She had cerebral palsy and had personal care needs. She attended university and until she had applied for her NDIS her mother was her full-time carer. Her dad pretty much her full time taxi.

Mum would attend the university and carry her books to class. She would attend to her personal care needs throughout the day. Toileting, getting food from canteen, assistance with feeding and so on. The young woman was a full time student. The commitment from her mother was huge.

She had friends at university too. She would go out with them. Dad would drive her and I think her friends, between them, assisted with her personal care needs. Her family were brilliant. The young woman wanted for nothing.

In the mornings mum helped her get ready. Got her books ready, dressed her and breakfasted her. Then dad would drop her and mum at university and the day began. This commitment from the family had been going on for two years. It was a joy to behold.

Like most young people the young woman wanted some independence. She didn’t want to have her mum and dad with her wherever she went. She wanted to live life on her own terms. It is not that she was not grateful for her families support, it was just that she was young and wanted some independence and privacy.

I had a great relationship with her family. When I visited they always fed me. They were from a CALD background and they would feed me with exotic curries and treats. When I left mum would slip me goodies like samosas and curry puffs.

One must also consider the toil on the family. Mum couldn’t work because she was virtually supporting the young woman full time. She didn’t complain, she just saw it as her motherly duty. When I worked in the NDIS field I met many, many families like this. The level of commitment they gave was immense.

The young woman wanted to be able to attend university without the constant presence of her mother. Her mother was quite happy to continue with the support she was giving but admitted that a bit of time for herself would be wonderful. The young woman also wanted to be able to go out with her friends without her dad hovering around.

The young woman also wanted to leave home eventually and wanted to prepare for that. She wanted carers who were not her family. She wanted to develop some skills that would enable her to be as independent as possible. She wanted to identify technology that would enable her to cook for herself and be safe in the kitchen. The NDIS plan that she required was quite substantial and needed to cover her time at university, time at home, time in the community and her capacity building requirements.

I was lucky to be sharing an office with NDIA delegates. We discussed the young woman’s needs at great length. We agreed that the care needs on campus were the NDIS responsibility. We agreed that the share of care that the informal supports had taken on (mum and dad) was not really sustainable. We also agreed that it was completely feasible that the young woman wanted to develop capacity to be as independent as she possibly could in preparation for moving out of home. There was even some support required at home to assist with preparation, scribing and getting assignments done.

All care needs on campus were funded. A carer to assist the young woman get ready in the morning was also funded. Assessments were funded and therapy was funded to build greater capacity leading to greater independence. Transport was funded to get her to University, home and to be able to socialise independently. Her needs to complete university assignments such as scribing while at home were also covered,

It was a great plan. It all fitted in with section 34 of the Act. The plan allowed for community and economic participation. The plan allowed for capacity building towards independence. The plan acknowledged she was a fulltime student and therefore qualified for level 3 transport. The plan acknowledged that the level of support provided by informal supports was not sustainable and that the informal supports needed to be supported so that they did not break down. The plan acknowledged that informal supports also needed to participate in the community and that the level of support that they had to provide did not make this possible. All of the above are justifiable under Section 34 of the Act. Approving it was a no brainer.

A happy story. One that shows the potential of what the NDIS can provide when people know what they are doing and interpret NDIS legislation correctly. Indeed, none of the above is rocket science. Sadly, it seems, that if this young woman had tried to get this level of support today she might be denied.

Recently I received an email from an access and inclusion officer at a university in Queensland. This is what they said of some students at the campus, “…. They were advised that NDIS will not cover on campus personal care or off campus educational support (such as a support worker when at home to help with highlighting and organising notes, organising folders, assisting with scribing and handling notes for assignments etc).”

I despair. What are these delegates doing? What justification do they have to deny this support to a person with a disability that requires it so they can participate in university? I can tell you that they have absolutely no justification whatsoever – NONE!

Let’s be clear. A university’s job is to teach. It provides all the necessary things for a student with a disability to learn while on campus. Auslan interpreters, captioning, wheelchair accessible venues, assistive technology, extra times for exams and so on. A university is also responsible for providing accessible amenities like parking, toilets and the like. That is their responsibility!

Every student who does not have a disability that attends university cares for themselves. They feed themselves and look after their own hygiene. This is not the university’s responsibility. If not being able to care, feed or look after ones hygiene will preclude someone from participating at university and campus life this is where the NDIS comes in. If its not to do with learning it is not, I repeat, IS NOT, the university’s responsibility. It is, I repeat, IT IS, the responsibility of the NDIS. A responsibility that is clearly outlined in section 34 of the ACT, that allows community and economic participation. It is not rocket science.

I know not why these students with a disability are having their funding cut for care needs on campus. If delegates are ruling this they should not be in the job. If Local Area Coordinators are refusing to ask for it in plans, they should not be in the job. If it is directors, the CEO or the Minister directing people to not fund this care, they are in breach of their own NDIS legislation!

I have no doubt these students who are being denied are going to review the decision. It’s going to take three months or more for their review to be dealt with. In the meantime how will they study? Possibly, even after the review, the NDIS will stubbornly refuse to change their decision and this will necessitate an appeal to the Tribunal at great expense.

What is worse is the appalling stress and barriers that these ridiculous decisions are placing on the students. What is worse is that the NDIS are messing with the dreams and aspirations of these students with disabilities. It is disgusting!

So to the NDIS and its partners I say merry Xmas to those of you who constantly strive to do the right thing, and there are many. To the others, take a long hard look at yourself, you are in the wrong job, just get out!

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