We want a Level Playing Field

A LEVEL PLAYING FIELD

A situation in which everyone has a fair and equal chance of succeeding.

Has anyone who has a disability or looks after a family member with a disability noticed how there are different rules for them than for everyone else?

When Miss Chloe's dad committed suicide a few years back, his superanuation group were not going to give her what was rightfully hers, because she was 18yo and I was not her legal guardian. I called the VCAT to inquire about the process. When it was described, I was mortified and disgusted...talk about degrading and humiliating! When I mentioned this to the lovely man from VCAT, his response was: 

"Families of people with disabilities are GUILTY UNTIL PROVEN INNOCENT
Seems they are the only demorgaphic in Australia to have this honor! 
Because SOME people rip off their loved one  with a disability...
Some people in general society murder and rob others,but that doesn't change the premise of innocent till proven guilty for the rest!
Needless to say, I am still not her legal guardian!

Fast forward to recent times...NDIS times
Now this is an organisation that has successfully removed any semblence of fair play when it comes to the people they are supposed to be helping.

1. They have changed the concept of 'Fair & Reasonable' from being about the participants needs  to being about how fair & reasonable it is to the NDIA.
   
2. No participant is allowed a copy of what is being submitted from the plan to the  NDIA.
3. No participant has the right to refuse their plan and be reinstated with their previous supports     (they can appeal, which can take up to 6 months) but they still only have what NDIA has given them.
4. They refuse to give the participants any information on how they arrived at a plan that is nothing like was talked about in the meeting, when the participant needs to appeal or have a review done.
5. You never, ever get to speak to the same person twice and you never get the same information twice! The running joke around the ridges is:               If you don't like the answer, just call again!

Now they have created a new policy: A participant is not allowed to record their planning meeting, about themselves for their own personal records. 

Frightening, considering the police have informed us:

ANYONE is entitled to do this, as long as they let everyone in the room know they are recording it. If the planner is uncomfortable, NDIA must supply another planner....

  BUT the NDIA doesn't care about this entitlement, They have said no and that is that. So now there is absolutley no way for a participant to even know what was discussed in the planning meeting if they need to appeal or have a review!  YET, the NDIS has all the information when making their decision on the blind request for review....

GROSSLY UNFAIR!!!!

Apparently, we are allowed to take notes, but it is very hard to scribe a 2.5 hour meeting and are the planners going to sign off on the notes so the participant has a record that they are true and correct?    
Hummmm, we shall see..........

The time has come for participants to stand up against the inequality and demand we get given the same rights as everyone else.

The Federal Government needs to take some responsibility here and make the NDIA allow participants the right to have access to all the information they need when needing to submit a review or appeal.

A LEVEL PLAYING FIELD FOR ALL

A Leaf out of Bunnings Book

 Ahhhh Bunnings, a massive business with almost as big a heart!

Now this is NOT an advert for Bunnings, but  more so a pat on the back for a huge organisation that a massive amount of good to the local communities.

Anyone who has visited Bunnings on a weekend knows all about the Sausage Sizzles. 

But Bunnings does sooo much more for the locals.

The Bunnings Community Involvement approach is built on the principal that they are part of the local communities in which they operate.They focus their efforts on giving meaningful support where it makes a difference.

And what a massive difference they make!

Here are but a few things each Bunnings store does in their local communities (other then Sausage sizzles):

• Allow Community groups/Charities to run cake stalls, 

           tin rattling and raffles in-store

Participate in needed projects at communities sites ( ie: create playground for kinders etc)                                 

• Donate items for raffles etc
• Create and host regular free, in-shop projects for speciality groups ( people with disabilities, children etc).
• Have a Community  groups/Charities awareness day,where these organisation have an opportunity to speak about what they do and raise community awareness and some money.
• Have events to celebrate and thank Community groups/Charities and give them valuable networking opportunities.
• Promote the Community groups/Charities who are hosting the sausage sizzles on their website 

IMAGINE IF EVERY LARGE ORGANISATION TOOK A LEAF OUT OF BUNNINGS BOOK AND GAVE BACK TO THEIR LOCAL COMMUNITIES IN THE SAME WAY.

There would be much less need and much more equality, dignity and connection!

Community groups and Charities would not have to be constantly begging for basics and looking for grants and donations.
It is time for the big organisations in our local communities to start meaningfully putting back into their communities and truly become a part of their local communities. Lets Change

                                                                      this       

                                                                      To this

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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

Carers are not machines

With the advent of the NDIS, it seems the unpaid carers are not being recognised to their vital role in caring for their loved one.
The NDIS is all about the person with the disability and their needs and this is a good thing.
To begin with, the planners and NDIA didn't take the welfare and well being of unpaid carers into account at all.
They realised, rather quickly that if they do not look after this group, people with disabilities are going to cost Australia millions more then it is now, due to carers not being able to manage or cope.

In saying this, unpaid carers are treated like machines....

• No you are not entitled to timeout from your duties as a carer...
• What do you mean, you need  time with your other family members?
• Why should you have down time for yourself?
• Of course you can't have a holiday without our loved one with a disability.....
• You are lucky you get anything.......

And the list goes on........

I find it interesting how many people leave the industry after a certain amount of years, due to carer burnout, yet they don't truly get that unpaid carers don't have the  luxury of leaving in spite having carer burnout ( unless they relinquish their loved one).

 Isn't it time the unpaid carers are truly recognised and rewarded for what they do for this country?

Isn't it time the carers are included as part of the solution - not seen as part of the problem?

Even machines break down, if they are not well maintained

If the NDIS & Governments continue to only pay lip service to the unpaid carers, the NDIS will go from a preventative program to a crisis program very quickly and we are back to the dirty old system we had before. But worse, because we spent all this money on the NDIS to have..the same old, same old...

We need to ensure the carers are well supported whilst carrying out their selfless duties

www.idareu.org.au

We all need time with our mob

Have you ever noticed how sometimes, out of the blue, we feel a need to contact someone - a family member or an old friend; attend an activity or an event, which simply makes us feel good for no reason other than it just does?

Humans are known to be creatures of a pack and so by nature, we don’t operate well in isolation.

The emergence of NDIS, seems to have created a tendency for one-on-one (individual) support, where a person with a disability is being taken out from their group setting to receive one-on-one support instead.

Don't get me wrong here, one-on-one support is wonderful and many people with disabilities can learn quicker, have access to the community around them easily and, with more dignity when receiving this type of assistance.  There is also the benefit of more flexibility as activities can be tailored to a person’s needs and passions.

However, the biggest problem with one-on-one support is the tendency for isolation to creep in, as there is no avenue for interaction with like-minded people.  This lack of interaction, makes it difficult for such individuals to develop socialising etiquette with others, namely members of the public, and could eventually cause mental health problems.

I tend to see it as spending time with their 'mob'.  We all know there is just something about this that makes people feel wholesome including people with disabilities.  They don't have to be with their 'mob' all the time and it doesn't have to make sense to anyone else...but they do need this time.  Be it once a week, thrice a week, or even once a month.......

We often hear from families with intellectually disabled children, that one of the issues their children face when attending mainstream schools, is difficulty in making ‘real’ friends among their peers.  We need to find a way to give these children an opportunity to spend time with their 'mob' and create a sense of belonging among them.

Chloe Dymond has a candid way of introducing herself when asked where she is from - she always responds saying she 'Comes from Down Syndrome'.  I simply love this phrase, as I think it gives her that sense of belonging, and I visualise “Down Syndrome” as just being another country, with people of different views and cultural backgrounds.  Similar to how many immigrants build a sense of belonging through community centres that reflect their ethnic origins and have a tendency to gravitate to suburbs where people from their country of origin  tend to reside.

Chloe needs to spend time with people from her ‘country’ to feel connected to the world.

I hope the NDIS does not take away these people’s opportunity to 'recharge their batteries' with their mob and further reduce opportunities for the general public to engage with people with disabilities, and learn from them.  Collectively, families who have people with disabilities, need to work together to create a healthy lifestyle balance, for the people we care about, as well as play our role in educating others on creating an inclusive society.

www.idareu.org.au

And so this is Christmas...

What should I buy?...
It is that time of the year again?
That went waaaay too quick!

Are you one of those people who have trouble buying for your loved one with a disability at Christmas? 

Or worse, having to give suggestions to grandparents and others?

Here is a few tips:

Purchase gifts around what skills your loved one may be learning at the time, such as;

Cooking     

• Cook Books
• Cooking tools, such as; measuring cups, electric beaters, customised equipment for those with limited motor skills, baking tools, knife sets that are safe for learners
• Cooking kits; groovy sets with all the ingredients to just put together, cup cake and slice mixes and decorations
• The list is endless.

NB: Give them their own cupboard for their equipment

Gardening

• Gardening tools such as; rakes, shovels or basic equipment like gloves or a water can
• Easy growing plants such as; herbs or pot based vegetables.

Empower through experiences:

Either something they love doing like:

• A footie membership
• Train rides to country
• Going to live theatre
• Concerts
• Gold pass movie tickets
• Attending a chocolate cooking class ( or any other cooking class).

Or things they may never have experienced like:

• Yarra river boat cruise
• Hot air ballooning
• High tea.

TIPS:

• Make the most of the companion card ( if they have one)
• Actively use your free rural/regional train travel with the pension card
• Sign up to Living Social or Scoopon Daily deals ( there are many daily deals sites), these have great experiences at great prices
• Get a few people to go in for a bigger present.

Here is hoping these ideas are helpfu!

Wishing everyone a wonderful and peaceful Christmas 2017, from all at iDareU.

   



 

Dear Doctors, ENOUGH!!!!

This is a letter from my book 'Removing the Fear of Raising a Child with Down Syndrome - Waising Miss Chloe' .Sadly, it is more relevant today than it was 4 years ago, with the advent of the Down Syndrome blood test imminent in Australia.

Please don't allow Australia, to go the way of Iceland and eliminate a group of people because..well no-one really knows why they have to be eliminated.

Open letter to Doctors and Obstetricians.

My name is Sue Dymond and I have a young adult daughter who has Down Syndrome.

Fortunately for me, her and all who know her, I was too young to have the amniocentesis when I was pregnant. I say fortunately, because when my baby had tested positive to Down Syndrome, I would have terminated the pregnancy. I wanted nothing to do with a disabled child and all the hard work I imagined went with that job.

If this had happened, I would have missed out on knowing one of the most pleasant, self-assured, calm and confident young women I have ever met.

I find it very, very sad in the 21^st century that there is still such a strong bias by the medical profession towards termination when Down Syndrome is detected prior to birth. It is very important that we are open-minded and give parents a balanced view of the positive and negative issues surrounding raising a child with Down syndrome.

NEVER ASSUME; not all parents want to terminate, and the reason many others do, is because it is painted as such a negative, unusually an incorrect outlook of theirs and their child’s life.

I can fully understand this attitude 30 or 40 years ago, but today, when there are so many young people in society with Down Syndrome proving to all around them that they are very capable of learning and being productive people in society. Admittedly they need some guidance and assistance, but I would love some one to tell me which child doesn’t?

An interesting statistic from an Australian survey conducted in Feburary 2013 by Sue Blandford, Down Syndrome Victoria, shows: 53.5% said their child's health had been mostly excellent since birth, my daughter is one of those statistics. 

This is over half of all babies born with Down Syndrome being healthy, so why are we advised to terminate on a less than 50% chance of having an unhealthy baby?

Yes, I found the first ten – twelve years hard work, with running around to lots of experts and professionals and teaching her basics, boundaries and consequences. I have to say though, the past ten years she has been a delight (well mainly).

She does volunteer work with Meals on Wheels, she helps an organisation feed the poor every second Tuesday, she has a black-belt in Karate and is a helper teacher. Yes, she still needs guidance and I imagine always will need some, due to her inability to manage unforeseen circumstances.

I was recently told by a friend that I have everything a parent would ever ask for with Chloe. I have a child who loves me and enjoys my company and visa versa. 

Our journey has had its challenges and will continue to, but isn’t that true of anyone who has children?

More than the challenges though, it has been rich with learning the important lessons in life – and some of those lessons are not true of anyone who has children. They are a gift to those who have a special needs person.

I ask the medical profession to please become more learned about what happens to people with Down Syndrome after they leave your care and then deliver the balanced information to parents who find out they are expecting a child with Down Syndrome.

As I mentioned at the top of this letter, the world would have been a way less rich place, if my choice had been different based on knowing that Chloe had Down Syndrome before she was born.

Saved from pinterest/followpics.net

Carer Tips - Language Please.....

One of the biggest divides between disability service providers or organisations and people with a disability and their families, is the language used by professionals.

Goodness, some conferences even have presentations advertised as 'easy english'.

Here are a few things that need to be investigated if we want to make the disability sector vibrant, open and easy to navigate.

1. When you don't think something is possible, don't default to no, suggest you are not sure, but will find out and follow up 
2. Privacy, workplace health & safety and lately NDIS, are unacceptable excuses for not working with or for a clients needs
3. Never, ever, use acronyms without explaining what it means, 90% of our clients have no idea. We do not want to look incompetent by saying so, please just dont use them
4. When writing letters or emails, remember your clients like short, simple and clear messaging.

NOT THIS!!!!!

A letter written to all the perspective participants going into the NDIS!
And what are they really saying......

" We are sorry, but due to higher demand then expected, the NDIS roll out will take longer. We are sorry for any inconvenience"

Well that's what we THINK they are trying to say. This letter has one sentence with 58 words in it, a little too much to read I believe.

The very scary issue is; if this is the type of communication from the NDIS which believe is acceptable, why should other disability service providers or organisations change their language?

NDIS needs to lead by example and break the cycle of unclear and complex language.

The very best way to create inclusive language is to deliver a message for all types of communication levels, from a school year 9 through to sitting in the pub or other social gathering with your friends.

Bring THAT language into all communications with participants and families of people with a disability.

Great communication can melt away barriers, encourage positive interactions and end in a much more constructive result!

The importance of Charity Membership

Membership is so much more.

There are many upsides to membership and very few downsides.

One of the big benefits is feeling a part of something bigger than yourself. If a person believes in something or is passionate about something, becoming a member is a great way to walk that passion.

Becoming a member of iDareU, for example, is very exciting as this is a vibrant and passionate organisation. Membership is for everyone, as our mission to create natural inclusion for families with disability and becoming a vital part of their local communities.

Membership is seen as a commitment, but it is often not a  huge commitment. There is a cost and you have the ability to have a say in the direction of the organisation, at the AGM or by becoming a board member. These are by no means compulsory, though.

The most important things about becoming a member are:

• a sense of belonging and purpose

• satisfaction from knowing that you are making a bigger difference

• access to membership information and portal

• discounted products and training

• helping iDareU reach their goal of natural inclusion.

If iDareU is not the charity for you to become a member of, please consider one that would align with your vision and purpose and become a member. Whatever you do, become a member and support a community of like-minded people.

Go to: http://idareu.org.au/ to join 

Carer Tips - Prepare early for independance

We all want our children to be independent (not dependent upon us). It is most parents biggest dream AND fear.

Sadly, although many dream of this, not as many actually implement strategies to teach and maintain the taught practices to their person with a disability.

There seems to be a belief that they will do everything for this person and one day, they will just morph and become totally independent!!!!

Intellectually no-one believes this BUT in reality, this is what happens time and time again.

Below are some tips, if this sounds like you, but you have no idea where to start:

• Start early: Start as early as possible, ensure the task is suited to age. Instead of asking what your two years old would like to have read to them, show them a book in each hand & give them the choice of 2
• Build confidence; As they get older and conquer the required task, add another & another, don't stop, because they can have archived one thing
• Goal setting; Set 2 - 4 goals per year to be taught
• Empower; STOP being their mouth piece. Every time you speak for them, you are telling them they are not important.
• Priorities; HOW IMPORTANT IS IT? Is it really a major disaster if the clothes are not pegged properly?
• Teach; the old-fashioned things; like washing up and drying the dishes. Even if you have a dishwasher. It the skills you are teaching - not the convenience
• Communicate; Teach from the level they understand; not try to get them to understand you, use short sentences and only 1 or 2 instructions at a time.

Over time this becomes a complete task, achieved by them with your support.

This is just the tip of the iceberg. Next blog will be more tips towards independence.

Meanwhile pop over to the iDareU website & check out what is going on

http://www.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

There is no cure for Down syndrome

I have just finished watching the public hearings into the Disability Support Pension hearing inquiry and I can truly say that I am speechless!

Here we are in the 21st century and still there is so much confusion around Down syndrome. Apart from the bizarre comment from a spokesperson from the Department of Human Services (DHS) - that she could not comment whether Down syndrome could be cured because she isn't a medical professional. There is also a massive issue around how something that is not a medical condition can actually be "cured".

In almost 90% of people who have Down syndrome, there is an extra chromosome in every cell of their body. It is a chromosomal disorder. It is just the way they are, and I find it very offensive that professionals seem to think there is even anything to cure!

My daughter has Down syndrome and she doesn't think there is anything wrong with her! She is well aware that she can't do some things as well or as fast as others, but she just accepts that and finds ways around it. She believes she comes from Down syndrome - and I tend to agree with her!

To say a person needs curing is to say there is something wrong with them in the first place. As one lovely young man with Down syndrome said recently on the topic of aborting foetuses with Down syndrome: "We are actually Human Beings first."

It would help many professionals to remember this 'minor' fact.

The idea of thinking of Miss Chloe any other way then what she is is abhorrent! She is witty, resourceful, creative, practical as well as many other things, and if she was to some how have the extra chromosome removed from very cell in her body - she just would not be Miss Chloe anymore.

Back to the spokesperson from the DHS regarding the cure for Down syndrome:
It is true that a person can be thought a fool until they open their mouths and then they confirm this assumption, so here is a message for you:

You don't have to be a medical professional to see a person without an arm doesn't have an arm and the arm won't grow back. And you don't have to be a member of the medical profession to know there is no way a person with Down syndrome can 'lose or be cured' of their Down syndrome.

Here is a message to everyone:

Ignorant professionals are not just ignorant, they are very dangerous. They open their mouths and other people who are ignorant believe what they say, because they are paid a lot of money to be spokespeople and "must" be right. Please be aware that not all people who are spokespeople have any idea what they are actually talking about.

I have a wonderful daughter and know many people who just happen to have (or come from) Down syndrome. Yes they have their differences (as do many of us), and I say THANK GOD FOR THEIR DIFFERENCES, because that is what makes them the amazing human beings that they are.

DHS, you need to re-educate your staff and be a lot more discerning with who you send to public enquiries!

'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