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Submission SUB-B7R8-003018 (Anonymous)

Submission reference
SUB-B7R8-003018
Submission type
10 areas for improvement
How can we empower you through the planning process?

On behalf of my daughter.
Ppl with disability have no privacy. The NDIS knows everything about us, and more, that is necessary for her to qualify for a plan.
NDIS knows so much that privacy is an issue, particularly with so much outsourcing and different organisations involved in providing services.
We have had 3 different experiences of the NDIS. It was good (for us) when run by NDIS. When we were outsourced to LAC name. it was awful. The planning was perfunctory. There was never any follow up contact. When our needs changed I could not get a call back or email response for months, not until I copied the minister and the local MP into the email.
Now we have moved to the regions where LAC name is responsible for us. They have been a revelation for how support planning and coordination should be done. They are kind, polite and proactive, efficient and timely. There is no stress involved.
As an anthropologist of disability I advise that NDIS and service providers who are kind, polite, proative, efficient and timely will help engagement with all ppl from marginalised backgrounds. Staff should have cultural awareness training, at the least, and it should be a normal part of ongoing professional development. Employing ppl from these marginal backgrounds is the best solution. Train them properly and support them to provide support and services into their own communities. It is a form of empowerment.

What is the best way to provide supports for those not in the NDIS?

In the regions.
State and local governments must step up and provide, or at least facilitate and encourage, opportunities for community access and inclusion. Many ppl with disability cannot work and face a life of stultifying boredom and loneliness without these activities. NDIS funded ppl are injecting a lot of money and providing a lot of employment in these communities. The least that local governments can do is provide quality opportunities for the money to be spent.
There are support providers who only service ppl with NDIS funding. This is discriminatory. They either provide services or they do not. How the service is paid for is the responsibility of the person using the service.
Local governments should be providing at least one activity option per day, or actively supporting individuals and organisations who do so. Too many ppl are using their funding to hang around in food courts and beach carparks because there is nothing to do and/or no access to do it. This problem is worse in bad weather and school holidays.

How you would define reasonable and necessary?

There should be a standard definition of what a good quality of life is for everyone living in Australia.
Then 'reasonable and necessary' is what is required for ppl to achieve this standard.
This should apply to all residents, and include all services--medical, educational, disability and so forth.
An artificial institutional and cultural divide between those with and without disability has formed.
All ppl need services at different stages of their lives, some more or less than others. It is normal and we live in a society that supports those in need.
It is divisive to blame ppl with disability for being a cost burden when everyone else is costing tax payers in some way: aged care, schools, hospitals, roads ...
It is an investment in the health and welfare of the ppl. Healthy happy ppl contribute to a thriving economy.

What is the best way to support children with disability… and those with emerging developmental concerns?

Deliver supports as a normal part of the system. Normalise supports for everyone.
Schools have a sports teacher--give them a disability support person or teacher too.
All facilities must be physically accessible.
Re education--read my book 'An Ethnography of Severe Intellectual Disability' by Jocelyn D Avery.
See previous answers for navigating support, and support in and outside of the scheme.
You must support the parents/carers. Empower them to help themselves, or spoon feed them what they need.
Simplify the system so that it is more accessible. You probably paid a fortune to a consulting firm to design the Portal and its diabolical.
I'm sure no emotional, exhausted, overworked carer/parent never had a say it the design and development.

How can the market be better designed, structured and supported?

We know where to contact the NDIS.
We see advertisements for the big providers often.
The smaller providers cannot afford to advertise. Although it would help if their CEOs took a pay cut.
Another job for state and local government--have a local database of local providers, and/or a high profile disability officer who can point ppl in the right direction.
What to do when you have funding and a support provider?
Activities need to be offered, supported and promoted by local governments.
Workers who are well trained, confident, valued and respected are happier in their employment. They also need to be well paid. We see this in the aged care system too.
Care work is undervalued throughout society. Only the government can begin to change attitudes about this, and it is gender related.

How should outcomes and performance be measured and shared?

These things are exceedingly difficult to measure.
Try a new approach. But you don't need to reinvent the wheel.
Think of goals in terms of the Convention on the rights of ppl with disability.
Were the rights of the person funded achieved this year, with this plan?
If not, why not? Reassess, replan, improve.
Is yes, good job but take measures to make sure they continue to be improved.

How would you build better outcomes or goals into your plan?

It is winter in the region and there is very little for my 28yo daughter to do.
Support disability housing initiatives, whether privately, community, commercially or government funded.
This will enable ppl with disability to live safely in towns, regions and remote communities.
Think about meaningful activities for them to do. They need to get out of their houses each day, whether its for work, volunteering, art, dance ...
Mandate inclusive buildings, activities and facilities. What are local governments doing to facilitate this?
The money is being spent in their communities so they need to provide good services and activities in return.
It cannot all rest on carers and volunteers. We are exhausted from years of caring and its just too much.
Employment.
There are ppl with disability who are not capable of working, do not want to work, or even understand the concept, and never will. Accept this and stop trying to make them. Stop making their carers feel guilty for not getting their caree working. There isn't enough work for all the able bodied ppl. Let us use the funding for other more meaningful activities.

What does good service from someone helping you navigate the NDIS look like?

I need someone who knows the system and knows our needs.
They need to be kind and patient.
They need to work for us, not the system.
Their response needs to be timely.
The portal is appalling.
The codes are meaningless mumbo jumbo.
Its just so not user friendly.
Give me a heading and a list of what I can claim under that heading, not a bunch of feel good institutional speak.
You need to define what is medical and what is disability. Part of the NDIS cost blowout is because it is picking up the slack for shortfalls in the health and education systems.
MND for example is a medical issue, not a disability issue but ppl with MND are put on NDIS with no good outcomes.
Support coordination is good for ppl with multiple service providers but good coordinators are hard to find, actually any coordinator is hard to find ATM.
Ppl with complex needs are in the too hard basket and no one wants to take them on, even though complex needs coordination is better funded. They want the extra $ but not the difficult work. They must have an open door/list to warrant getting paid for complex needs coordination.

How should housing and living options be improved to build a good life?

Governments, communities, individuals should be empowered and encouraged to provide disability accommodation.
BEWARE that disability accommodation does not become a cash cow for profit seeking commercial enterprises as it has in the aged-care sector!!!
Ppl need surety.
We have spent our retirement income on a house for my daughter to live in. We hope that she can get SIL funding but it remains to be seen. The process is long and detailed.
We could apply for public housing. It might be 10 years before she gets anything and then we would have to apply for SIL to support her living there. What if we waited ten years for public housing and then could not get SIL? Ten years wasted.
There is copious literature telling us lovely stories about what our options are, but nothing that offers any real hope or direction.
Enough withe lovely stories. Get too the issue. What are the options? Where do I apply?
Give us some certainty. Let us apply and get approval pending the availability of accommodation.
Is the decision of the NDIS in line with the human rights of the person with a disability? Its a good way to decide if the supports are fair and reasonable.
Reasons for being declined need to be clear, the next best alternative offered. Ppl should not have to go through a new application process for a new option.
I've written submissions about this before.
Think of how you can encourage ppl to help them selves;
No stamp duty, is one idea.
Legislating accessible housing is another--oops the govt passed on that recently didn't they!
Make developers put disability housing in each subdivision. Public transport too.
I haven't go time to go on--I'm a FT carer.

How should the safeguarding system be improved for a better NDIS?

There are lots of ways to do this. You have experts advising you, and I'm sure you've heard it all before.
But I want to advocate for uniforms. Its not popular among many--they don't want others to know they need a support person--but that implies that there is shame in needing support!!!
If support workers wore uniforms (and name tags) that clearly showed that they were working and who they were working for it would make them much more accountable in the community. Ppl would know who was doing a good job and who wasn't, who was not treating their client well, or potentially abusing them. Ppl could be reported for doing the wrong thing.

Is there anything else that you would like to tell the NDIS Review?

NDIS is all about planning but it is difficult to plan for the future when NDIS funding is not guaranteed. This is particularly relevant in housing. It is a gap that opens up for ppl who age out of EI and youth services, and as their parent/carers age. It must be addressed.