NDIS - How did they get it so wrong?

We are a huge supporter for the CONCEPT of the NDIS.

It is supposed to bring respect and dignity to people with disabilities and their families.

And enabled these people to lead a better life with choice and control.

Sadly, the NDIS is bringing frustration, bullying, crisis’s and suspicion to this group. As if they didn't have enough to deal with before!

No-one could have envisioned a system worse than the old system, but boy, the way the NDIS is operating, this is exactly what has appeared for way too many people. They are randomly stomping on vulnerable peoples lives and making a huge mess.

Because of the insane staffing caps the Gov has put on the NDIS, planners are bullying clients, treating them as a pest, insisting on meetings happening – whether the participant is ready or not – just so they can TRY to reach unreachable KPIs and burning out.

There is no follow-up for a participant or their nominee once they have completed the planning meeting.

On many occasions, they don't even get a copy of what the LAC is going to submit! 

The next piece of communication is when they receive the NDIS approved plan and it is final unless you submit a review!

So the participant has no right to see whether the LAC has correctly captured their situation, they don't sign off on the plan, they have no safety net if the plan is completely inadequate ( if they were already getting funded services) and they are not entitled to see the paper trail to see where the failure came from when preparing a review...

LAC’s are discouraging self-management.  Annual reviews are falling short of participant needs (even when the previous years funding was all used up). There is no consistancy from one planner to the next.

COME ON….REALLY

It is not that hard to do better, and it won’t even cost anything – in fact, if the NDIA includes the participant/ nominee more the planning process, there will be less reviews and that will mean less money being spent and less staff hours being spent on reviews that could easily have been prevented.

We don’t need another crisis driven disability sector.


If you need any help with your plan, contact iDareU at: connect@idareu.org.au

Carer Tips - going the distance better!

When a loved one is first diagnosed with a disability, people tend to go into shock for a while. From there, it is full steam ahead, as they madly chase around to find the very best outcomes for the person. Many carers remain in this mode and even when things are calmer, they find things to keep them at the crisis-driven, edge tipping point.

This way of living is unsustainable over a long period of time.

The direct results are Carer burnout, not being able to cope with unexpected issues, mental illness, isolation, relationship breakdown and many other uglies.

Being an unpaid carer is NOT a sprint, it really is a marathon and people need to learn to pace themselves to ensure a good quality of life.

Here are some simple tips to assist with finding and keeping balance in your lives

When things are not in crisis, relax 

This is the time to recharge your batteries. Have a long walk, or bath, or read a book or anything else you find pleasurable. The housework and other non-urgent things will keep.
Many people find themselves playing housework catch-up when their loved one goes to respite instead of relaxing.

Restoring your energy is more important than a clean house!!!

Create a sustainable plan

NDIS has come or is coming. Ensure your plan is not just a crisis avoidance plan. That is how you live now. The plan needs to be looking at sustainable and healthy living for all. This is the only way for Australia to save money in the long run.

Allow and ask for help

Being all to everyone ensures we will burnout. It is not a natural way for any relationships. Give your loved ones your best and outsource the rest. This way, you are able to enjoy the people closest to you and not be caught with those ugly friends called: RESENTMENT & GUILT.
Don't assume people will say no. If you don't ask the answer is guaranteed to be NO. If you ask, you have a 50% chance the answer will be YES...

Remember the gift of giving. 

Don't deny others the opportunity to give to you and your family, as you are denying them a precious gift.

Laugh & Meditate

Two very simple, yet effective ways to help yourself and give you more energy and reduce your mental stress. Yes, you DO have time....you don't have time NOT to do these things.
Meditation need only be 15 min a day to start with...in the shower, if need be.

Go on - give it a go......


iDareU has teamed with some amazing people to bring you a host of  Living Well - Taking Care of ME workshops.

Go to this link and see if anything strikes a cord with you. If it doesn't strike a cord - sign up for the Carer Kit one anyway, you may need a kick start...

http://www.idareu.org.au/happenings.html

Why should I pay?

This is a question I hear many times when we do our workshops. People want to know why they have to pay for the workshop and during the workshop they want to know why, with the NDIS, they will have to pay for everything. This is a direct result of the Government creating a welfare mentality within the disability sector as well as other vulnerable people sectors in this country.

Many of us send our loved ones off for the day and someone else pays for them to be there. The money doesn't pass through us - therefore people think it must be free. We pay $10 per hour to council for respite and think this is the total payment.

This is WRONG on both counts! Whenever something is free or cheap - it is because it is being paid for by someone else. We have no idea what the real cost is, so we assume what we see is the real cost.

There is a lot of nonsense floating around with the advent of the NDIS that everything is going to cost more. In reality, many things are going to be charged to us at the true cost. One of the advantages of the NDIS will be the transparency to the clients and their carers of charges and costings. This is powerful on many counts, including:

1. We know EXACTLY what something REALLY costs.
2. Money is just a manner of transfer of giving and receiving. A fair exchange.
3. We devalue people and the transaction when we expect something for nothing. Every person  deserves to be honoured.
4. We are always accountable to the organisation who is paying - they pay - we have to abide by their rules.
5. We respect and value things we have to pay for more than things that are given to us. We see this in our workshops - the workshops that are not free to participants (paid for by an organisation) ALWAYS have a much higher percentage of no-shows than the ones where the participant has to pay.
6. Giving people something for nothing tells these people they are not respected and removes dignity.

I was once asked where the $50 per person charged for a 5 hour workshop which included lunch, refreshments and resources goes! This was a very sad question, as $50 for any 5 hour workshop with the above is dirt cheap and is very obviously not making huge amounts of money, if any at all.

So the next time someone asks "why should I pay" my answer will be "because I value and respect myself and those I do transactions with".

IDareU

'Difficult' carers do not have permission to abuse our disabled loved ones!

I recently read a book titled: 'I've been good so far' by Joan Reid.

It is not an easy read, as it highlights the reluctance within disability land of anyone to protect our most vulnerable.

'Floss' has complex and challenging needs. She became too hard for her family when she was 13 years old and they put her into 'care'.

This book really shines a light on what happens in some of these so called community houses. And no, I am not saying all community houses are the same. I am saying, due to such tight budgets, there are a lot of places that hire people with very little or no experience to work with people with disabilities who have complex needs.

Poor Floss received so much shocking treatment in more than one of these houses, mainly due to her inability to carry out the tasks she was expected to without help. The other tenants loved ones wanted Floss out as a result of the welfare organisations finding it too hard to enforce things to keep her safe. And the services also decided her mum was difficult, therefore Floss' punishment was justified.

Floss endured many years of poor treatment. The book covers the period from 1981 until 2013, which means that 'the olden days' can't be used as an excuse.

I remember when Miss Chloe was around 12 years old, my regular carer was a way for 6 weeks and we were given a replacement during that time. I was very rigid with her bed time and explained to the carer that Chloe needed to be in bed at 8.30pm. For 3 weeks, I would arrive home at 10pm to find Chloe just going to bed (she had to be up for school at 6.30am). I was so frustrated that no matter how many times I told the carer she just would not listen. The carer would simply say 'She (Chloe) didn't want to go to bed', 'She (the carer) can't make her'... Blah, blah, blah.

I explained she (the carer) didn't have a choice. This woman was the paid adult and all she needed to do was tell Chloe at 8pm that is was 8.30pm and that she had ten minutes to be in bed. Chloe couldn't (and still can't) tell the time. This way, the carer was guaranteed that Chloe would be in bed by 8.30pm.

The carer didn't take any notice of this information, so the next morning when Miss Chloe got up she was very distressed telling herself she was a very bad girl and started hitting herself (Miss Chloe always self talks and acts out what people say and do to her).

Eventually I got the gist of what was happening. The carer had verbally and physically abused Chloe.
I notified my case-manager, who contacted the organisation the carer worked for. The response the case manager received was: "No we won't be following up because 'HER MOTHER IS VERY DIFFICULT, YOU KNOW'. Apparently it was OK to abuse someone if their mother was not the complimentary type and made life difficult for the organisation!

A lot of Floss' issues were exactly the same! Poor Floss was punished because her mum would not accept substandard treatment of Floss. And sadly, these are not isolated cases. I am often hearing of family members who are banned from visiting their loved ones in their residence because the families have complained, been concerned, or questioned things about the care their loved ones were receiving.

I hope and pray that the NDIS will make these organisations more accountable once they realise the concerned carers/families won't be trapped any more. I hope we will be able to have more flexibility around who cares for these very vulnerable people.


idareu.org.au

The NDIS Rollout – More than an inconvenience for too many

As anyone who reads my blogs knows, I am a massive fan of the National Disability Insurance Scheme (NDIS) – once it is rolled out and working properly.

What you may not be aware of is that I am extremely nervous about the journey in getting to that point.

I regularly mention in the Imagine Better workshop that I see the process of the NDIS as a long renovation that will produce a much better product than it was before the renovation. And like with any renovation, we are going to have to put up with the mess and inconvenience whilst the renovations are happening.

What I failed to mention is that whilst we are being inconvenienced, we still have a roof over our heads and we are not in any danger of falling off the edge.

Since the introduction of the roll out of the NDIS I have heard some frightening things that are happening, including:

• A 15km limit on the distance you are allowed to travel to get a service and that service providers are allowed to travel to a client.
• Services being removed from a person before the NDIS is in place – leaving people with nothing.
• Inexperienced planners preparing incorrect plans and people being left out in the cold with nothing and nowhere to go to get help or answers.
• Making self-management of the funds so convoluted and paperwork heavy that no client can navigate them.

Although there is a phone number you can call, unfortunately I know from experience that the wait on hold time is insane. I was on hold for 96 minutes and in the end I gave up!

I seriously hope these are isolated issues that are being resolved very quickly, as they are completely unacceptable.

If even a few of these issues are true, many people are going to be tipped over the edge and there will be many more bushfires to put out in the disability community. There are already so many vulnerable people trying to keep it together, it really won’t take much to have them lose their grip on that tiny piece of string that barely holds them together.

I have a dream that the NDIS will be the end of a crisis to crisis driven industry – as the current system is. We are not helped until there is a crisis and because the crisis is being created by not helping those who just need a little bit of help, the crisis are not being managed, as there are too many that the system has created.

The NDIS is meant to be all about giving people with a disability the power to live their lives with dignity, empowerment and choice. It was conceived to remove the shackles of the antiquated system we have endured for far too many years.

As the Productivity Commission said in their report: ‘The system in place now is so broken it needs to be thrown out and completely started again.' Hence the introduction of the NDIS.

Please don’t make this a repeat of the old system with even more pain. People with a disability and their carers deserve more than the scrap heap. We deserve a safety net to be put in place to ensure we are not worse off whilst this mess is sorted out.

Come on powers that be, get working on a transition with dignity – because we certainly deserve it!

iDareU.org

The wind beneath my wings

I have recently been presenting workshops for Carers of people with disabilities. These interactive workshops are very casual, yet it amazes me that a large group of people can sit in a room and listen to someone speak for a couple of hours, then get up and leave without connecting with anyone else! However, when you ask people to introduce themselves and actually include everyone in the process of the workshop, the chatter with new friends in incessant!

There is a section where attendees can discuss their fears around their loved ones with a disability. They then have to come up with something to remove that fear. The astonishing thing about this exercise is that when people start discussing their fears, they realise they all have the same fears! And right up until this point - they thought they were the only ones, that they were weak or crazy for having such fears! All of a sudden a huge weight is lifted, as they realise they are normal and like everyone else. I don't believe there is anything more healing for the soul than to realise you are not alone on your journey and there are people like you that are willing to walk beside you.

The most important thing about a Community is talking to each other and finding out we are much more alike than different. I have previously spoken about becoming part of a greater local Community, but you should never underestimate the importance of becoming a part of our disability Community. I like to see this Community as my Tribe. My tribe does not have to have a loved one with Down syndrome, they just have to have a loved one with a disability to be able to connect with me on a very different level to someone who has never walked this path. These are the people I don't need to have my 'happy face' painted on for. These are the people who really GET IT when I say I just want to run away.

These are the people who are the wind beneath my wings. They help me fly, as well as allow me to grieve and even throw a tantrum.

THESE ARE PEOPLE WHO ALLOW ME TO BE ME and for that, I thank you!

Sue Dymond
iDareU