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Submission SUB-B2K9-003487 (Anonymous)

Submission reference
SUB-B2K9-003487
Submission type
10 areas for improvement
How can we empower you through the planning process?

They need to read the reports submitted and other evidence (eg scientific evidence of best practice)
They meed to look at individual needs not assume they know what is typical and only give you that.
They need to get rid of LACs for planning meetings as the LAC can tell you your request is reasonable but you get a shock when you get your plan that the thing has been cut.
They need to use plain English definitions and clearer terminology.
They should have more templates to help you write a participant statement and your allied health & doctors to write reports.
Thet should have someone you can ask questions of. The call centre is useless as they have limited information and seem to rely on 'cheat sheets' rather than actually knowing what they are talking about.
Planning meetings often feel like you are going to beg and you have to prove yourself over and over again.
You should see a draft plan and have a chance to argue your case and explain whetrher what they are fuding will really meet your needs.
If you have underspent in the last plan they should not just assume you didn't need the funds and vut back on the next plan. They shoul ask what the barriers where and be prepared to roll funds over to give people the chance to get those supports. eg I was stripped of Health and Wellbeing funding that had been allocated to develop exercise & diet plans but that I could not use die to COVID and health problems. I now have no plans but no funding to get them. This makes no sense.
They need to understand that people with psychosocial disabilites may need a few shorter planning meetings as one long one is too onerous.
They need to stop treating us like children.

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

The syates and territories should be adequately funded to meet disability needs.
Advocacy and umbrella organisations should be funded for a facilitating role. Get rid of LACs as they were supposed to do this but do not. They should be well established grass roots organisations will expertise in specfic disabilities rather than one organisation trying to do it all
There should be a central point for finding disability information on the web that dierects people to apprpriate contacts in their area gor their disability It does not make sense that people on NDIS are mot eligible for excellent services run by states & territories for people outside NDIS. They should be a mechanism to use NDIS funds for these. People also should not ne excluded from services and discounts because they are not on DSP. For example medications should be at concessional rate for all people with a disability (my meds cost $200 a month)
States should also be able to purchase services they are not equipped to provide for people outside NDIS

How you would define reasonable and necessary?

Reasonable and necessary is a confusing term and should be abandoned as short hand.
What is necessary should include the therapy recommended by professionals - the planners should not be able to over-rule the hours of therapy funded. If therapy is R&N it should be fully funded to the level required. JDIS needs to stop shifting costs to the health system / Medicare and the participant .
There needs to be a clearer guideline on what is evidence based - peer reviewed research should be accepted as well as guidelines fron the health department, specialist medical colleges, allied health organisations etc. There should be a mechanism where someone who has persued all other therapies can get permission to use an experimental or novel therapy.
People should be certain that there funding won't be cut just because a planner (who has never met them).decides they habe been funded in the past so now should not need the funding. Assuming you are making constant improvements in capacity because you 'should' (even if in reality you have made no progress or deteriorated)
The planner should adk the participant questions even after the planning meeting. This is where a meeting to discuss the draft would be usefu.
It is reasonable for participants to have sufficient Core funding to live in a safe and clean home without an expectation that over time their capacity should increase so that they no longer need cleaning etc.
Reasonable means that people should not be forced to do activities they would never chose because they are cheaper, eg group activiies. Reasonable means having adult options.
Reasonable and necessary should provide enough funding for a person to live a life as close to a non-disabled person as possible.
It is not fair that people who are less articulate and do not understand regulations and buearacracy get less of what they need.
NDIS meeds to stop denying things which cost less because they have an expectation of how you should live. eg won't pay for food delivery but will pay much more for a support worker to do meal.prep even if the participant does not want a stranger in there home.
Needs to stop asking people to spend thousands on OT reports to get things they need. If thimgs are high cost there should be a panel of experts drawn from disability organisations that can advise and reserve OT reports for people who do not know what they need and require advice, fitting etc. OT report requirements should be simplified to make them less expensive.

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

Price gouging is rampant. Participants should be able to pay the same for services as anyone else.
For non-expert services like cleaning all participants should be able to use any service, including non registered
There should be a review of other providers to reduce the number that are required to be registered. For example an allied health practitioner with current tegistration to practice should not need to go through the full NDIS audit & be NDIS registered. The cost for practices with 2 or 3 practioners is exhobitant.
Allied health should charge the same hourly rate as for people outside NDIS but ne able to add an amount if they are required to keep notes. Support workers who are required to keep notes should also be able to change for this.
There should be regular spot checks on providers. All participants or nominees should have copies of what services the provder says they are giving and the costs.
Support coordination should be charged pro raa per month rather than for each email, phone call and meeting.
Participants should have the option of providing regular (minimum annual) reports on all providers. If there are complaints about a provider, all participants using that provider should be approached and given the opportunity to provide feedback to NDIA.
In the long run a ratings system could be developed.
There should be a list of danger signs for participants to look out for for dodgy operators.
Plan Managers need to work for the client as more than a bill paying service. If there is doubt about whether some service or item is R&N they should follow up.with NDIA and liaise with the participant rather than giving a blanket no and making the participant chase it up. They should not make the participant add item numbers to invoices/claims as that is their job. There is actually less paperwork being self managed than when I was plan managed.
It should be easier to chage plan managers mid plan if they are unsatisfactory but the set up costs are not available.

How should outcomes and performance be measured and shared?

Ask the participants.
Is there life improving or at least being maintained.
Are there needs being met.
Do they consider services value for money.
Do they have to spend too much time getting things done right?
Are the services delivering what they should?
Are there cancellations by services?
Do the participants think it is value for money.
Are they happy with life and is NDIS contributing to this.
Are their complaints being acted on.
Do they see anything that can be improved in services and NDIS
Do they really have choice
Do services or NDIS put pressure on them to do things they would rather not or in a way they would prefer not to

Also data on organisations..Level of staff turn-over. % of income from NDIS. Profitability index. Turn over of clients. Complaints and compliments.
NDIA/NDIS KPIs Whether KPIs relate to participants satisfaction. Staff turn over. Legal cases, AAT vades and outcomes.

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

People should not be denied funding for mentoring
People should be supported for more maistream activities
Better linkage with education & training so people don't fall down the cracks
NDIA should not deny people funding to pay fot new activities for a limited period up to say $500.per activity
People should not be denied supports to help prepare for employment or volunteeind. People should not be restricted to disability employment supportbut be able to chose who will assist and how. NDIS blocks funding for any but the most narrow definition.

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

Support coordinators need to listen and fond the supports participants seek.
Support coordinators should give participants short lists to chose grom whoch must include services not from the same or associated company.
Support coordinators should tequire yraining & qualifications. NDIA should have guidelines for SCs to follow and have a network they can use.
SC should charge monthly like plan management not for time used as they often waste time and participants run out of SC funds and sre left to fend for themselves.

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

People shoul not be forced into group homes even though it is cheaper. Most adults do not live this way so why should the disabled?
There is a severe shortage of appropriate SIL. I have seen flats in high rise advertised and don't know how they were accepted.

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

If a participant complains it needs to be follwed up within days.
Participants should be able to do what they want ad long as it is legal and would be something done by a non-disabled person. Too many organisations only do what is convenient for them and use safet as an excuse.
Other organisations,NDIA, governments and insurance companies should not theart individuals. Consultation with disability gruops should occur to establish guidelines and advocate whete participants and providers/organisations disagree on risk.
Participants should get more say