It is official. It is pandemic. The NDIS and LAC partners are infected with the clueless. At least twice a week I am being contacted by someone who has been dished out a totally irrelevant and pathetic plan. As a good friend said to me recently, “We worked so hard for the NDIS.”  We can’t sit back any longer and let this clueless lot ruin it.  And ruining it they are.

So I am going to publish a guide. A simple guide for the clueless. An NDIS Planners Guide for Dummies, if you like. Cos, you know, they read this blog wherever I publish it. I am hoping that this simple guide will help them. Come on people don’t laugh, a bit of optimism please.

Firstly, my dear Planners and LACS, the compulsory questions on the CRM will not give you all the answers that you need. I know some of you think your job is to just read out these questions verbatim. I am here to tell you that’s just being lazy. Quite why you have to ask about people’s incomes is beyond me, but you do. For a scheme that is not means tested its a stupid question to ask. Accordingly, I always told participants (disabled people), that they didn’t have to answer the question. And they didn’t.

Unpacking a persons needs is an extremely personal thing. Accordingly, I always apologised to them for the personal questions that were about to ensue.

Asking people about their personal hygiene and personal requirements takes a great deal of sensitivity. If you don’t have that, get another job. Let it be your mantra – PARTICIPANTS ARE REAL PEOPLE. It seems silly to have to remind people of this. Sadly, there are lots of clueless robots out there that forget this and think their sole job is a production line attendant for NDIS plans. Roll them off … NEEEEEEXXXXT!

Now, a persons plan is complex. But at the same time it is a simple thing.  It really can be broken into a few parts:

• The home.
• The community.
• Skills that can and need to be developed.
• Technology and adjustments that are required.

It really is that simple. Not complicated at all. Now, before you ask the compulsory questions get to know the person and their needs around these four simple things. Once you have done this, and you have developed a picture of the persons life and needs, you can better examine their goals and even expand on them. Let me give you an example.

Ok, at home:

1. Who lives with you?
2. How do they support you?

Now, let’s stop there. if the disabled person is an adult, bear in mind that wonderful NDIS principle of an ordinary life. In an ordinary life an adult is not living with their parents/guardians forever. An adult is not supported by their parents/guardians forever. Most people who are married do not have their spouse doting over their every need. Most people living an ordinary life do not have their children rushing home to support them. In an ordinary life families support each other but they also enjoy each others company.

Now, in the case of children, an ordinary life generally does not involve parents having to give up their jobs. It does not involve them looking after their children intensively 24 hours a day. Sure, many parents will and do support their kids in this way but they should not have to.

Remember, as well as an ordinary life, the NDIS is built on a principle of economic participation. This is true for parents and all supports. They have a right to work.

In doing so they earn money, pay taxes and, god forbid, even contribute to paying for the NDIS. Parents and carers have a right to an income, to enjoy life and, more importantly, enjoy a normal relationship with their disabled spouse, child, sibling etc. This relationship should not solely be based around meeting their disability support needs.

LAC and Planners out there, you will hear your team leaders tell you that the NDIS does not replace informal supports. They will insist on the principle of parental responsibility. Well, I am here to tell you that they are wrong.

They are wrong because they ignore that other important principle of “maintaining informal supports.” Yes, the NDIS was designed to also support informal supports. To allow informal supports to work, to allow them to participate in the community and, crucially, to allow them an ordinary relationship as possible with their disabled family member/friend.

What happens if “maintaining informal supports” doe not happen? Well, often the family unit breaks down. It actually costs the NDIS more in the long run when that happens. The idea is to facilitate and support the informal supports. Not to give them as little support as possible because “informal supports are available.”

So, it’s not the responsibility of informal supports to drive the disabled person everywhere. It’s not their responsibility to give up work. It’s not their responsibility to be on call 24/7.

The NDIS  has a role so that the disabled person is as independent as possible. Remember this too – An aim of the NDIS is so that informal supports can have as “normal” a relationship with their families and friends as possible. Let this be your mantra because this is an “ordinary life.”

So, when you are looking at the four areas that I have mentioned let yourself think only what is required for this person to be as independent as possible to:

• Make friends
• Communicate
• Be accepted
• Be mobile
• Be happy
• To participate in the family, community and economically.

You touch on all of these areas and you unpack and relate it to the participants goals. Not only that, you assist the participant to identify gaps in their goals and then to improve and strengthen their goals. The solutions are in a whole range of areas:

1. Therapy
2. Personal; support like support workers, cleaners etc
3. Respite.
4. Technology.
5. Transport.
6. Accommodation.
7. Vehicle modifications.
8. Home modifications.   And so on and so on.

Most importantly remember that the aim is:

1. To allow the person to participate in the community, family and economically as much as possible.
2. To allow the participant, particularly if they are adults, to be as independent of informal supports as possible.
3. To maintain the family unit and informal supports.
4. To allow the disabled person and informal supports to enjoy each other and develop a relationship that does not solely focus on CARE and SUPPORT.

And yes, there will be times when you do not know the answers. There will be times when the disabled person and their supports do not know the answers. There will be times where informal supports say they want to do it all. Each person’s plan is an individual thing. I have a couple of tips:

1. When you or they do not know, RESEARCH solutions!
2. When informal supports insist on doing it all themselves, try to dissuade them because the NDIS is there for a reason. Most probably, and eventually, their need to be a martyr will lead to burn out.
3. Think how you would feel to have your spouse, parents, siblings, friends etc catering for your every need. A disabled person wants independence and normal relationships – not one solely based around their informal supports providing for their care and support 24/7
4. if you have never encountered a persons disability, at least do your research before you meet so that you have SOME basic knowledge.

If you don’t have answers or some of these basic understandings, do not even consider writing or submitting the plan!!!

And to the LAC who recently responded to a friend off mine who requested to be able to explore her sexuality and personal needs such as masturbation by telling her – use your husband – Get out! And don’t come back!

An NDIS plan is complex but not rocket science.  It is also not is an excuse to dump responsibility on informal supports … because that is not an ordinary life. is it???

 

I love the NDIS, I really do! It is the best thing that has happened for people with a disability. It was built on principles of simple human rights. A recognition that people with a disability had a right to be fully included in society. A recognition that in doing so society also benefits. Invest and you shall reap. Our Treasurer, about to embark on a stimulus package because of our sick coronavirus infected economy, might want to have a deep think about this. Imagine how much stimulus could happen if Australia properly invested in making all of its infrastructure accessible so that people with a disability could access it any time and any place.

But as much as I love the NDIS I also hate it. It frustrates me that this visionary concept was so screwed up by bureaucrats with no clue. Instead of seeing the NDIS as a model of human rights that benefits everyone the bureaucrats have seen it, as they are trained to do, as a cost. So instead of people with a disability being valued and seen as an asset they are once again seen as a cost and a burden. The narrowness of this thought process makes me scream. Not want to scream, actually scream.

I am no longer in the NDIS space. I have since moved on to a wonderful job that I enjoy immensely. Even so the NDIS is never far away. In my own time I assist people who contact me to deal with the NDIS. I do this because these people have no help. They ask me to help with a whole host of things. requests for reviews, challenging decisions, dealing with access request forms, setting their goals and sometimes just lending them my eyes so that they can vent about their immense frustrations in dealing with the system.

You know there are great people in the NDIS. They know they system is shit. They provide me with leads and contacts. Take it from me, the NDIS and LAC program is full of good people, with good intensions and who are restrained by bureaucrats and leaders who have no clue. Who are restrained by a Government more interested in restricting spending than designing a system that truly invests. Ask yourself this question; since the NDIS started how much more accessible has your local community become so that people can properly utilise the funds they have received from the NDIS? – How much capacity building in your community has actually happened? I bet most of you are hard pressed to know.

Obviously, because I am deaf, Deaf and hard of hearing people approach me regularly for advice. But I have others who ask for help to including professionals. So in this last few weeks I have:

1. Been appointed as an advocate for a deaf person with bilateral cochlear implants who got one of the worst plans I have ever seen.
2. Met with her LAC
3. Prepared her complaint to partner organisation and NDIS
4. Had the NDIS initiate her review with a promise of a quick resolution ( I laughed when they said that, but they may surprise me.)
5. Assisted prepare a response because yet another family were denied Auslan in the home. Because sign language development, according to some in the NDIS, is responsibility of the school. (Scream with me.)
6. Discussed with key disability organisations how to assist families who cannot understand the decisions of the NDIS nor implement their plans.
7. Discussed with key disability service providers how we can help families and individuals get past the access process because they can’t understand how to request access. If they do get the Access Request Form, many don’t not have the literacy nor understanding  to  get the request form into the system.

Just to remind you. I don’t get paid for this shit!

You know, I even applied myself. After working in the NDIS space for four years I decided to apply myself. I went online, answered their access questions, went through the steps and finally they acknowledged that I probably meet access and told me to call the 1300 number. I looked all over the page to see if there was another option for people with communication issues or hearing loss and their were none. No online text chat feature (They have a robot one that is apparently hilarious,) There is no email. There is nothing except the phone number. This is the NDIS. Australia’s premier disability support program, hardly accessible itself.

The website thus us that, ” If you need help filling in the form or making the call, you can contact your Local Area Coordinator, Early Childhood Early Intervention partner or your contact your local NDIA office.” GREEEAAAAT, perhaps not. You see the organisation I worked for could only help you fill in the front page. We would then give them the form and tell them to go see their Doctor and provide all the evidence required to meet access. This was because the organisation didn’t want any legal responsibility for the application or to get blame if all went arse up.

I am told from reliable sources that there are some LAC organisations that won’t deal with access requests at all. Apparently, if you have a disability and walk into the office or call them they ask if you have an NDIS number. If you do not have an NDIS number they send you away and say come back when you have one. When challenged they say they are unable to assist with access requests forms and only assist once a person has been allocated an NDIS number.

The NDIS website says to go in. You go in and some won’t help until you have a number. You can’t get a number until you meet access. You can’t meet access until you send in your form. If you can’t understand the form or the process what do you do? If the LAC organisation won’t help who does?

Apparently some disability organisations might be able to assist but not everyone fits within their remit. There are advocacy groups that help with appeals but they are not funded to help with dealing with the access steps. What happens if upon don’t live near a LAC  or NDIS office? What happens if you are immobile and can’t get out and about much because – You need the NDIS funding to do that? What happens if you are from a CALD background and, god forbid, can’t even read what’s on the website. What happens if you have an intellectual disability and literacy issues and no support? Well for many you are just simply fucked. There are many, many people in this boat!

And that is the system we are dealing with. Australia’s premier disability program virtually in accessible for many right at the entry point. Don’t get me started about plan implementation for those that actually have a plan … That’s a novel in the waiting!

Feel free to scream with me.  Common NDIS, you have to do better. Make your system accessible!

PS: For the record, I rang the 1300 number for an access request form. I was promised one in 14 days. Four weeks later I am still waiting!