Concerns regarding NDIS bill impacting trauma informed care and support worker access (Participant experience) | External submission

Submission 2553

Dear Inquiry,

I am writing to you to express my concerns at the proposed bill before parliament and ask that it be stopped. It is not a fair or reasonable bill and attributes power to politicians without accountability or scrutiny.

Bill Shorten asked for an internal inquiry so he could do what he had promised to the disability community and he has taken that power and the NDIS under this bill no longer allows for the original purpose of the whole scheme and what Labor fought for. I therefore as that no longer is complete control and the ability to put through anything anyone wants to be revoked. Anything as major as this needs to go back to the people and the parliament for redeveloping with co-design with people with a disability and. It also needs to be up for scrutiny and accountability as part of an inquiry into any changes. This bill needs to be fit for purpose which is not!

At a minimum this bill needs to go before a full and extended inquiry giving until August to scrutinise the veracity of it.

I am a person with a disability who was always eligible for support but was never able to get it due to a shortage. Prior to coming on the NDIS I had had to stop working because due to Family and Domestic Violence I have been left without informal supports and injuries that compounded my disabilities.

NDIS has been life changing I am and have been grateful every day for the NDIS because it has absolutely changed my life!

I survived on my own for so many years, paid my way and taxes etc even with a degenerative spinal disease until it became too difficult without help, affordable housing and enough money to survive on. For me the NDIS is a life saver. It has transformed my life. It has given me a chance to do things, as mentioned below, that I love, that bless not just me but other people as well and helps to create systems that are safe and designed for purpose.

Due to being able to have the supports I need, being able to attend appointments and having someone who can help me get to work and back I can now work and contribute in both paid and voluntary ways. I feel fulfilled and others are blessed, educated and helped by what I do including the government.

What I have achieved since coming on the NDIS:

Started a consulting business that trains services /communities /governments
/organisations etc in Trauma Informed care and approach.
Consults with services/communities/governments/organisations to enable them to create better systems
Developed a training course with DVNSW on DFSV and delivered this to services, government, mental health and legal entities.
Work with housing and homelessness organisations and peak bodies
Created a whole lot of change and education around DFSV, Trauma, disability and homelessness
Continued being able to be a Love Bites facilitator with support.
Can afford to see my essential therapists to maintain my disability.
Can afford medications essential for managing my disability
Had a Birthday party for the first time in years
Have been able to afford to go out for an occasional coffee or a meal occasionally

Submission 2553

Have no family so have people I can trust to help me and support me in the form of support workers.
Have been able to have people visit or take me to see people when I have prior to this been so isolated
Continue to volunteer to help make things better for other people.
Started a podcast and post that brings people together in Australia and around the world.

Being able to choose people to help me along my journey has absolutely changed my life. Because they are in close proximity and in my home, they must be people I feel safe with and trust. What I have found is that the people who have been independent have been the best; these people I have met through my own situation, friends, and co-workers going back to study. These are the people who really care and go above and beyond. They are people that make things so different and aren’t the people that fraud the system but in fact give more than what they are paid for. They are the ones that won’t leave you in a difficult situation because their shift has ended, which I have experienced from registered companies. They won’t charge in 10 minute increments so they get more money, again like registered companies. They are also people who will only charge you what they work. It’s the registered people that have crept up and up with charging you. It’s them that loiter so they can be there 5 minutes extra and charge you 15.

So, reducing workers to registered companies only creates a monopoly squeezes out the smaller companies that would have been exception. Placing ridiculous charges to register as support co-ordinators etc means again only the big companies win, and we just keep big business squeezing out those that would have probably been exceptional. We have raised this repeatedly and have had not benefit.

All of my therapists are exceptional, and it did take time to find them, I know they really care about me and helping me to achieve what I need too. Without them I could not have the quality of life I have. They are the quality people, and they are not NDIS registered they are ABN registered, which is what my plan allows. The companies were the ones that were controlling and trying to take over. They were the ones dictating things I didn’t’ need and didn’t benefit me, trying to take money for no reason. There is also more accountability with individuals and smaller companies because it’s easier to chase them if there is a discrepancy. The bigger companies give you the run around and do not give you access to the people who can fix thing. They were the over charges, none of my independent people do that at all.

My plan manger is exceptional and goes out of his way to answer any questions, stop payments when someone has been questionable, raise questions and checks if invoices align with what I had. Without him I couldn’t do this. He has been 100% reliable, after trying bigger companies who just stuffed me and others around.

Removing being able to challenge decisions should not be done. I had worked all my life with my physical limitations, but another set of permanent injuries acquired through a fall at work, and failure of the workers compensation system, meant that I could no longer work. I was devastated and could not afford all the therapies I required to give me quality of life and enable me to even dream of working again. I was constantly juggling if I had enough for food, could pay my bills, vet bills and therapies that sustained my mobility. I also ended up cycling in and out of homelessness and poverty (I now have a small amount more but with the help of the NDIS am managing my disability better).

When I heard the NDIS was coming, I rang every year to see if it was in my area yet. Excited to finally apply, I went through a horrendous process of being told the wrong things to write

Submission 2553

by the NDIA and them making multiple mistakes. Then it went to a ministerial investigation, and I was found to be without a doubt able and deserving of the NDIS. The NDIA under assessed my needs and continued to make mistakes and further traumatise me. They fought me on everything and refused to undo their mistakes and told me I had to go to the tribunal. At the Tribunal the NDIA were unprepared, tried to state things that weren’t true, delay proceeding and cause further pain and trauma. I was grateful for the member and the lawyer I was able to have represent me pro bono and they saw that what I was asking for was reasonable and necessary. This is where waste is happening. Not that people need to go to the tribunal as we need an impartial place to assess decisions, but that people are forced to go on reasonable and necessary grounds.

Removing being able to challenge decisions is very concerning as the Tribunal ensure fair and equitable decisions are carried out, to remove this is like creating a prison for people. Stopping people from being able to be heard and valued. It is a parent child model not a system of empowerment that the NDIS was devised to be. This should not be done!

Assessments and “Curing” Disabilities I am so concerned about this automated system. Disabilities are complex and humanity is complex; it cannot be reduced to what a computer says. We have so much evidence huge mistakes are made, and people’s lives are put at risk, see robodebt! Every time an automatic system is brought in it causes enormous irreparable harm and I know of people who have suicided by these methods. This system is supposed to be fair and equalising humanity. It provides resources and a dignified way for people to have quality of life removing this is abhorrent.

This government stood beside us promising not to take away our assessments with the people that know us and our disabilities but still, it has it in this bill. This cannot go forward. Rather than automate, only require documentation if something has changed or after 5 years just a, has anything changed letter, only do a review with the persons people if something is dramatically different. If you have a permanent and degenerative disability like me then you’re not going to get better. Telling people to put themselves through trauma because the government deems that a “computer system says they will get better,” is really horrific. Do you know how much trauma hospitalisations cause and not to even mention surgery, which is on every level!

When the rate of FDSV is double the rate with people with disabilities we have to be concerned and we need to be creating a safe way to sustain people to heal.

I have had said to me, with what appears a google search of my disability because the wording was verbatim, that I would be healed by surgery. Well, I am 21 surgeries down the line and other than my tonsils and appendix, have not be healed…but my mobility sustained.

It is also very ignorant to think that people are not doing everything they can to get well and to do the health stuff they need to do, so it doesn’t further impact on their disabilities. There is so much people deal with on a daily basis and to further traumatise people because they are being forced to do things that people not living with a disability decide they should do is unacceptable. Being asked to deal with a health system that further compounds their problems, and distress really shows such a glaring lack of information and understanding of the complexity of the systems, the systems that further abuse people with disabilities and also the inability of people to take and treat people seriously and with dignity.

Moving people onto systems that does exist is inhumane. Everything shut down and the little help I could get was non-existent when the NDIS began in areas far from me. For those years I had nothing and no help. So, taking this away from people prematurely is detrimental to people’s wellbeing and I would argue Unethical.

Submission 2553

Government Wastage

More than all of this it’s the amount of money the government spends on consultants to ensure they can get the changes they need pushed through. As I understand they spent 300,000-400,00 to create a narrative that the community will buy and turn on people with a disability. This is really underhanded and deceitful of a government and a complete deviation from the original plan and purposes of the NDIS.

It also creates systems that don’t work, run campaigns that promise us choice and control and then run campaigns to say that the system is “frauded” because that tested best to get the community on side. It is also governments that pay consultants big fees to change systems, not for the better as we know the feedback in Tasmania was that the PACE system doesn’t work.

It doesn’t make sense to me that a government that stood side by side with the disability community promising to make sure we were at the centre and this would return to the original purposes or the NDIS. They promised that our assessments would not be taken away or had other processes forced on us. They have done this in this bill and are doing exactly what they promised not to. How are we to trust their word!

This was a government who promised to stamp out political incentives and corruption in politics but then brings about a system change that does not benefit participants and may, itself be, engaging in the things they said they would stamp out. It uses a flawed system, not co-designed as promised and not designed to benefit participants. The disability community all along has highlighted and shown how the government can save money but they are not listening.

Fraud is not the big focus of the NDIS, it is transforming lives, creating an equal community, enabling people to do things they could never have dreamed of, having quality of life, creating communities that represent all people, empowering all people to work together for the benefit of all humanity.

You can’t use a group to be elected and then turn around and do what you promised you wouldn’t. That is fraud.

Ultimately the biggest waste, in every sense of the word, is that the findings of the Disability Royal Commission. They have not been taken seriously and implemented. This was the biggest way that the problems were highlighted, recommendations from the community taken on board and all these things could have been addressed. This would have saved the government so much money.

The predictions of costing for the NDIS is actually on track from the initial projections but the successive governments have used a false narrative to ensure people keep thinking it’s blowing out. I do agree some things need adjusting and changing but to basically throw out the NDIS with this Bill is inhumane.

Serious Concerns

There are serious concerns about how this campaign is being run to demonise people with a Disability and the NDIS:

a false narrative put forward of people with disabilities of “frauding the system”
That PWD are the problem for needing help, not the system and failure of successive governments that has caused the problem.
That the Liberal government changed the narrative and then labour has extended this and gone even further creating a division in the Australia they are saying they want to unify.

Submission 2553

It never works pitting one group against the other, eventually the truth comes out.
Because of the narrative being put out there people are abusing people with disabilities, I saw this recently with a group of young men. It was horrendous. The only reason was that they had a disability.
Violence against people with a disability are increasing
Disabled advocates are getting more and more death and rape threats because of the narrative created by the government.
More and more people are becoming suicidal because of this bill and the narrative.
That permanent disabilities are curable is rubbish!
That governments know better than health/therapist professionals.
That computers know better than health/therapist professionals.
There is also a false narrative that people are using the system to not get well.
There was a promise to keep the assessments with people that know participants and also work closely with them because they are best placed to give an accurate assessment.
Demonising people with a disability and the disabled only harms the whole of society and undermines all the progress.
Removing person-centred, fair and reasonable and choice and control from the core of the NDIS negates the whole purpose and meaning of the scheme.
Many women will be out of work!
Institutionalising people takes away their dignity, choice and reverts back to the dark ages of people with a disability
We are winding the clock back on all the progress we made with people with disabilities.
Group homes are a very abusive environment and some of the 4 that are in consultation with the government are some of the worst offenders.
People need to have the choice to stay in their own homes with the people that love them or choose their flatmates you can’t dictate this for people.
Making people share supports means they will end up with people who aren’t the right fit and maybe don’t even understand their disabilities
Sharing supports means people are forced to travel for longer to places which may cause further problems and also lost their dignity and privacy.
Cutting social and community budgets will stop people being able to go to appointments, engage with people especially as so many people like me are isolated, see people stuck at home and situations like Annemarie will happen and people will be found dead in their homes.
Cutting a budget that enables people to engage with therapists, medical people and actives and supports outside the home will have a detrimental impact on people and further the isolation that so many people with disabilities already face.

Women’s Employment

Women are the biggest contributors to this sector and will lose work. The government are stating they are creating better pathways and opportunities for women but something like 80% will be affected. It is actually an anti-women in employment bill.

Government Power and Control system to make all decisions and act on them themselves when they want: The current proposals create a perpetrator system. Government dictatorship Democracy removed Accountability gone No way to scrutinise what they are proposing No recourse in the tribunal

Submission 2553

No other politicians get to have a say or input from any other parties, maybe not even their own party More people hurt They can reduce plans etc by 99% with is absolutely unconscionable Government wants to go back to institutionalisation and dictating what people can and can’t do and how they can and can’t live. Only big business wins.

Cultural Change for people with disabilities

we are complete, acceptable human beings with value with all of our disabilities, and we do not have to live and contribute as abled bodied people
people with disabilities are some of the best money managers, and resources managers because they are great at making a tiny bit go very far.
People with disabilities know best what is right for them.
our disabilities are a super power we can hear, understand, empathise and see ways forward that others can’t.
we spend every day managing hundreds of minute decisions around functioning, health, disability and life, don’t put more pressure on us
life is complex! We deal with what able bodied people deal with and then all the other complexities and intersections that life brings
every system is set up for and by abled bodied people and this needs to change, this bill is no different. We should be part of this collaborative process.
Volunteering should be seen as a valid pathway. It actually saves the government sooo much money. My understanding and those in the sector were that it was designed for people who for many years were left without support to finally get it.
increase quality of life.
Understand that sometimes honest mistakes happen and work with people to gently bring resolutions. It doesn’t need to be an adversarial system.
barring miracles, Disabilities are for life!!! and will only worsen over the years.
each time a new injury happens, or a health complication happens, it affects the whole persona and can increase the disability.
one area of the body not functioning properly, affects many other areas.
People come in all versions, cultures, experiences, histories and people with disabilities are no different.
The policies made reflect the true heart of the politicians and this bill shows that the politicians do not care about people with a disability and feel they are people that need to be controlled. It also shows that the government believes big business it to be protected and promoted above everyone else.

Some of the ways the NDIS could be improved upon by the Government from what I gave to the Disability Royal Commission.

NDIS

should be an assurance scheme not an insurance scheme keeping person-centred, fair and reasonable and choice and control active.
Now basically worker’s compensation so only benefiting insurance companies not the people who are disabled
Needs ACCOUNTABILITY and the government cannot make changes just because they want to
Some of us have waited for help our whole lives
Instead of being assisted to have choice and control we are being controlled having what we need dictated to us. The scheme was set up for you to have the professionals you need

Submission 2553

manipulate legislation to deny covering services
causes more trauma because you have to ‘prove’ everything about yourself constantly and relive your history.
Aren’t strengths based focused
people with disabilities don’t focus on what they can’t do, they focus on what they can achieve because it’s too painful to focus on what they can’t do.
the system will cause more deaths, more attempted suicides, we will see people die because of it.
Engaging with safe, effective people is absolutely vital
Being a safe affective government is also essential
People are scared to speak up in case they lose the little help they get.
NDIA workers do not have trauma Informed training and practice; they do not have proper training and are not properly equipped for the job at hand.
Systems need to be person centred, trauma informed and understanding the complexities of people’s live, this is when we will get the most successful results

What was asked for initially that didn’t help

they constantly lost my documentation and duplicated files and then said no based on the “incomplete” duplicate
asked you to put in information in a way that means they could say no.
said they would ask for more information but didn’t, said no, and then I had to ask for a review of their decision.
use reviews as a power tool for them Suggestions for improving NDIS.
forms are so complex, no one knows, not even the people who work there, what the right forms are and how to fill them out – streamline forms
If the government systems were upgraded regularly, which keeps them in line with industry standards and ensures best practice and effective sharing of information for safety and protection, then these computers could be donated (or sold at cost) to people in need or services etc.
forms need to be rewritten so they are not prescriptive to a certain person or demographic, they need to be pliable enough so that it can work for different circumstances
also, trauma informed training and practice and the implementation of the mental health act 2011 reviewed 2 years ago for all people.
understand that if someone is homeless/in trauma/has an intellectual disability they may not get the letters/correspondences and therefore cannot respond in the allocated time, rethink the timeframes that are given to people to be more holistic with an understanding of the persons complete circumstances.
Do not call the person directly unless given permission by the participant. & only correspond by their chosen method ie. email, phone, mobile, text.
Trauma Informed training and practice by Blue Knot or properly accredited face to face with essential Lived Expertise component.
update/refresh trauma Informed training every year (not just a two-hour computer course but face to face).
treat people like human beings with respect and dignity and with worth.
If dealing with an advocate deal with that Advocate do not ring the person directly.
do not harass clients constantly because you want an answer immediately, understand that they have medical appointments, might be working or not well that day etc and do not ring three times in half an hour and say you tried to contact the person three times.
give realistic timeframes for people to be able to get documents in with kindness and flexibility to extend understanding the complexity of living with a disability.
have meetings that understand the complexities of people’s lives especially those with disabilities/health issues.
Create humane and realistic processes for people to be able to follow.

Submission 2553

create streamlined documentation to reduce the paperwork and repeating documentation
Be systems that are about assurance and safety nets for people.
stop demonising people who need help.
come from the premise that most people do the right thing, even the politicians at times have quoted this, so we need to behave like it in everything we do.
create safe, accessible systems for all abilities.
help/engage with people correctly the first time then you won’t have further problems or further experiences of homelessness, understanding that you have to work within their health and trauma experiences. Be person centred
Be preventative rather than crisis driven.
allow wrong/or mistaken decisions to be overturned in a phone call rather than asking the person to ask for a review of their mistake.
understand that people aren’t trying to be difficult but the system and the way people respond to them trigger trauma responses means we need to learn how to manage this appropriately
when people refuse to do something, there is a reason why and we need to understand why that is, eg. they may refuse to attend a particular place; this could be a place where/or reminds them of a place they were abused in the past
change correspondences to have kindest language.
Work with the person to get the best long-term outcomes.
Understand that not all people will ever be able to hold down jobs etc. And account for this in budgets/engagement etc.
re-educate why people need these services and that they are fundamental to people’s well- being and existence.
understand that people need support people to access these systems because of how abusive they are and especially if they have disabilities
not all disabilities are visible.
redesign systems with authentic implemented codesign process with people with disabilities (of multiple variations) and other parties such as DFV (all victims including children/adult children), People experiencing Homelessness, Youth, mental health etc etc
BELIVE ALL PEOPLE HAVE VALUE AND NEED TO BE ASSISTED. MY LIFE and

disability CHANGED OVER NIGHT AND IT HAS FOR SO MANY. IT IS NOT OUR FAULT

WE HAVE NOTHING. FOR SOME PEOPLE LIFE SUCKS AND WE KEEP THEM DOWN.

ensuring government agencies are bound by every other human right and legal requirement
ensure they are bound to human rights laws
consequences for workers who use bullying, intimidation and abuse with safe reporting options for people that have definite follow through.
ensure systems are safe, trauma Informed and apply good practice principles
ensure systems/workers/mangers etc are not black and white but understand the shades of grey that are part of the complexity of people’s lives.
legislation is not a weapon. It cannot be used as a way for government agencies to get out of things, but it should create a way to work within the system to ensure people are safe, empowered and given the best chance at life.
Every time we engage with a government organisation it is like going to a perpetrator and asking for help, this cannot continue.
it has to stop being a lucky dip of the person you get, there needs to be genuine generosity and kindness built into the system.
Government continues to Financially abuse people who need help, withholding things designed to alleviate financial stress and help people get on their feet.
paperwork needs to be streamlined with only essential information on them to protect people’s safety and privacy.
people with disabilities/people leaving Domestic and Family Violence should have a different set of frameworks and requirements so that they are kept safe and not re traumatised by the systems that are supposed to help them

Submission 2553

there needs to always be options to go to people with disabilities rather than requiring them to come to you and bring all their documents etc to systems.
Have disability/DFV liaison workers in NDIS etc that means that they do not have to engage with untrained and/or abusive people.
Change from a Power and Control mindset to a support and assistance model. We need people to be at the centre not having controlling people at the top.
remove people from the system that continue to act with Power and Control.
accountability for behaviour and ongoing support and training for workers
external supervision for every worker especially compulsory vicarious trauma supervision.
In house social worker for workers and people engaging with the systems.
Governments need to be redesigned so they are not financially abusive.
not everyone had someone to go with them to appointments so allowing for that when making appointments, maybe provide some point of external support for the person such as blue knot etc. This will ensure a neutral support person from an external source that is not government.
People with disabilities should be able to choose to live on their own or with one other person, not forced to live in group homes or with three or more other people and should be afforded the same dignity that everybody else is afforded.
If a neighbour makes a complaint about a group home and the workers this needs to be taken very seriously.
Government systems need to be set up with accountability, transparency and affirmative action.
platforms to choose worker too overwhelming and not vetted properly. Set up for people to be abuse.
Ask/consult with people what they need in a meaningful and responsive way.
We need multi-pronged trauma informed approaches.