NDIS: No Choice, No Control

The final months of the year are always a busy time. The school year comes to a close and we start preparations for Christmas and the Summer holidays. It is an even busier time for us as it coincides with the time of Dan’s NDIS plan review. For people with disabilities and their families the NDIS is a major part of our lives and grants us entry into a new world of acronyms. The NDIS is the National Disability Insurance Scheme and it is administered by the National Disability Insurance Agency (NDIA). While NDIS technically refers to the scheme, many of us often just use the term NDIS whether we are talking about the scheme or the governing agency.

The NDIS has been a significant breakthrough in the way that people with disabilities access a range of supports to assist them in their daily lives. One of the major goals of the scheme is to empower people with disabilities and give them choice and control over their lives. Without a doubt, the NDIS has definitely led to better support and increased quality of life, however, it has also led to a lot of frustration and stress.

I is for Insurance

One of the things that needs to be kept in mind about the NDIS is the third letter of the acronym. I is for Insurance. The NDIS is essentially an insurance scheme, and the primary purpose of an insurance scheme is to pay out as little money as possible. Necessary and reasonable are two words that are repeatedly stressed by the NDIS. The supports that are funded by the NDIS need to be necessary and reasonable and provide good value for money. I don’t think that there would be much disagreement about this. It is public money and it needs to be spent wisely. Participants of the NDIS know though, that the decision about what is considered necessary and reasonable rests with the NDIA. One wonders though how many of the decision-makers actually have first hand experience of disability themselves. 

The lead up to a plan review is busy. Each service provider must submit a report detailing the supports they have provided and how that has contributed to the the participant’s goals. At the review meeting we sit down with a Local Area Coordinator (LAC) to revise personal statements and goals and submit requests for support for the following year.  Most years the review process, while still stressful, has proceeded relatively smoothly. It is stressful because you never quite know how it will go. There is always a significant level of uncertainty about whether the level of support will be reduced or new requests rejected. If Dan’s support was reduced we would have to make cuts to his weekly programme which would be devastating for all concerned.

Participating in the NDIS is a steep learning curve. While the goal of the NDIS is to provide supports for people with disabilities, it is important to remember the NDIA is not your friend. Participants and their families need to always have their wits about them, be wary and alert when engaging with the NDIA at all times. We learnt this the hard way. You only have to be caught out once to learn the lesson, as we did with Dan’s first review at the end of our first year with the NDIS.

Dan’s first plan began a few years ago in mid January. Now you might expect that each year the new plan would always begin on the same date in mid January. No. That is not what happens. For our first review I was contacted by the NDIA in October – three months before the end of the plan. I wasn’t suspicious. I didn’t know. I figured that they were just trying to get all the reviews done before Christmas and the plan would begin again in mid January. To my absolute surprise Dan’s second plan began in mid December, meaning that Dan lost a whole month of funding. It seems that as soon as a plan is approved – bang! it starts, regardless of how much time might have been left on the previous plan. So you never know when your next plan will start – until it does. Now if the level of funding goes up, that’s not really a problem. But in Dan’s case it had actually gone down and so all the support we had scheduled for over Christmas now came out of the new plan, which was less. We then had to make cuts for the rest of the year.  I learnt my lesson. Next time around, I put the review meeting off for as long as possible.

Since that first time I have not had any arguments about the process. Until our most recent review which occurred last week. It was the worst review meeting I have ever had. I was accompanied by our support co-ordinator, who said it was the worst review meeting she had ever experienced too. 

This year has been particularly stressful and different, so I wasn’t unduly worried when I hadn’t heard from the NDIA about Dan’s review two weeks ago. But I was taken aback by the sneaky strategy employed. We had a different LAC this year. Not surprising, we seem to have a different one every year. The LAC calls me up and after introducing herself, asks if I have a few minutes. OK. She starts checking a few basic details and then I quickly figure out – this is the review meeting! There was no prior notification or warning. She did not even mention the words “plan review” or ask whether it was okay to do it over the phone right then and there. Have they not ever heard of email? I thought it was quite inconsiderate to ring up, out of the blue, with no warning and try to conduct a review meeting over the phone. When I asked whether we were going to review Dan’s goals etcetera, I was told they weren’t doing that this year.

Now this review was going to be very important for Dan because we were putting in an application for supported accommodation. We had spent weeks having appointments to get all the necessary reports – Occupational Therapy, Speech Therapy, Incontinence Assessment and Psychology, as well as reports from our usual support provider. It was only when I said we were putting in for accommodation that suddenly things changed and we had to schedule an appointment with our support coordinator. I have since heard that many reviews are being done this way – over the phone, out of the blue, with no prior warning. Participants can get caught out and end up losing supports. It’s very sneaky.

At the meeting, the coordinator and I are sitting in her office and the LAC is on the phone. Very quickly it becomes apparent that the LAC has not read any of the reports and knows nothing about Dan. It’s also very clear that she does not know what she is doing and doesn’t really have a handle on how the accommodation funding works. Despite the claim about choice and control, there are a number of things over which we have no choice or control. The choice of LAC and NDIA Planner is one of them. There are some excellent ones and there are some real doozies and it’s luck of the draw. The competency of the LAC or Planner can make all the difference between a good plan or one that is crap.

 I acknowledge that the NDIS is very complicated – I don’t understand half of it, which is why we have a support coordinator to help us through it, especially in regard to the application for accommodation. Basically there are two kinds of accommodation funding which both come with their own acronyms. There is Supported Independent Living (SIL) and Specialist Disability Accommodation (SDA). They are different but they kind of work together. Essentially SIL is about the support workers you need and SDA is more about bricks and mortar – at least that’s how it has been explained to me. There are different levels within SDA with the highest being for those people who might need major modifications, such as a hoist, adjustable benches or voice activated technology. Some participants will need both kinds of funding while others might only be eligible for one. 

Everybody Deserves a Home

Accommodation has been a major issue for people with disabilities. We have all seen the tragic stories of young people forced to live in nursing homes because there is no where else for them to live or middle aged people still living at home with elderly parents. For many people with disabilities they have had no choice and no control over where they could live and with whom. To some extent this is still proving to be the same case even with the NDIS. Dan would love to be able to live with one of his mates from Yellow Bridge. The problem is that many of his mates have higher physical needs. A couple of them are in wheel chairs, so they would be eligible for different levels of funding. So even if they want to, they may not be able to live together. There is still very limited housing available, so Dan might not get much choice about where he lives and with whom. So much for choice and control.

In the end the NDIA hold all of the cards. 

I have got to know quite a few parents who are in a similar situation and while we have breath we will continue to fight for our children. Our journey with the NDIS started when Dan was already a young adult and there are many years to go yet, but I feel for the families with young children who are just starting out on their journey. It is hard enough parenting a child with a disability. We don’t need the NDIA turning it into a nightmare. What will happen when we are no longer around? Will our children be at the mercy of an insurance company that is more concerned with cutting costs than maintaining quality of life? 

Despite the incompetency of the LAC, there is still hope. Our review reports will be forwarded to a Planner and hopefully they will know what they are doing. As our coordinator said, we have all the reports and they still stand whatever misconceptions the LAC might have.  Rest assured though, I am lodging a formal complaint about the LAC. I think it is perfectly reasonable for us to expect a LAC to come to a meeting organised and prepared, with a thorough knowledge of the NDIS system and an understanding of Dan’s needs.

So now we wait and hope for the best. There is a process available for us to have the plan reviewed if we are not happy with the outcome, however there is such a backlog that participants are waiting many months for a reassessment. I do hope we will have some good news to share in the near future, but if you do know somebody involved with the NDIS and they are looking rather stressed, now you know why.

 

15 thoughts on “NDIS: No Choice, No Control

      • Not specifically, more disengaged young people in the 15 to 18 age bracket. But looking at my case files shows that some may have a disability and that this disability and the lack of support has likely contributed to their disengagement. I like to have a basic grasp on all the factors when I approach things.

        Liked by 1 person

      • That would be a challenging job! Teenagers can be hard enough even when they are engaged. As a parent, I noticed a distinct change in the amount of support between primary and secondary education. Being a teenager is hard enough, but if you add a disability as well, it’s just another thing in the hormonal cocktail. NDIS is hard enough for those of us in it to understand and the processes are always changing too. I am an educated person and I have found it hard. I hate to think how hard it must be for families in more challenging circumstances.

        Liked by 1 person

    • Thanks, I guess a LAC would be a bit like a case manager. They are our first port of call when communicating with the NDIA. I’m not quite sure how it works in other regions and states, but in Toowoomba Carers QLD has partnered with the NDIS to do that LAC/Case Manager role. Their job is to put all the documents together, liaise with the participant and send it all to the NDIA. They can help find support services and answer most questions. Ideally we would have the same person in an ongoing role but there does seem to be a high turn over of staff. Not surprising – pretty stressful job.

      Like

    • Thanks, Jennifer. Government schemes always seem to be very complicated, and often those who would benefit the most are the ones who end up missing out or just giving up. On the whole, it has been a change for the better – they just need to make it more user-friendly and treat people with respect. Thanks for reading. 😀

      Like

  1. Pingback: Understanding the NDIS Plan | Living on the Downs

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s