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Submission SUB-Z8Z0-003101 (Anonymous)

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Submission type
10 areas for improvement
How can we empower you through the planning process?

I feel that once you have a diagnosis and have shown this to gain access to the scheme (for example, you have cerebral palsy level 3-5, you should be able to engage in a collaborative conversation with your planner, lac and other important people in your life, to determine updated needs and goals. Planners / or those assessing eligibility should have a VERY THOROUGH understanding of that specific disability and the functional impacts. For example, a planner who either has / or has lived experience around cerebral palsy should be completing these eligibility and planning decisions for those participants who have cerebral palsy. There is no point having a planner who doesn't understand your disability type and the impacts that it has.

Please ensure that prior to finalising a plan the participant has reviewed it, and changes can be made if needed. This would mean far fewer reviews/adjustments needed.

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

A major problem is the lack of paediatricians, and therapy services - how can a family get their child diagnosed if waitlists are 12months long.
Look at Italy I think it is - all children with disabilities are entitled to free specialised footwear if needed. This would make a huge change to the financial pressures on families.

All children and adults with a disability should be able to get a certain amt of support paid for by the govt. For children under 8 they should be able to get a certain amt of speech therapy regardless of whether or not they have a disability - this is a BASE ENTITLEMENT - say all children in Australia are entitled to 3 speech therapy sessions per year. If they have a diagnosed speech problem then this could be topped up by NDIS/Community/Education for additional therapy sessions, based on diagnosed needs/disability type. The same would apply for Physiotherapy / Occupational Therapy - all children in Australia are entitled to 3 sessions per year. Additional sessions are provided based on diagnosed need/disability. For adults maybe there base entitlement is 2 sessions of each therapy type/year, with additional sessions provided based on diagnosed need/disability.

How you would define reasonable and necessary?

The planners who are deciding 'reasonable and necessary' should have a VERY GOOD UNDERSTANDING of that disability label and the functional impacts it generally has on a person. This might mean that a planner who has cerebral palsy themselves/ lived experience is making reasonable and necessary decisions for a participant.

Maybe some kind of 'table' showing - for this diagnosis and for this life stage of participant these are the items that are usually deemed reasonable and necessary eg for a child with CP Level 5 - a wheelchair, standing frame, seating equipment, are R&N requests. That way families and participants could view the list to see if the item they want is 'usually classed as R&N' for most participants in this same category.

Maybe if the NDIA had an equipment pool that they could use to give 'equipment that is still in perfectly good working order' to other participants if needed this would keep costs down. Eg children grow out of there wheelchairs/walkers. If they were returned to the NDIA they could be passed onto those children who have been recommended to have the same equipment need.

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

1. All children in Australia should be entitled to say 3 therapy sessions /assessments per year. - this is your screening tool - this way you don't miss children who needed support but didn't get it as they were from vulnerable family, weren't able to get into a service due to waitlists etc. - use university students who have undergone specialised training, and who are towards there end of there studies to do developmental screens.
2. Once children have a diagnosed disability / concern then provide them with tier 2 level entitlements - block of funding to see a speech therapist - then time to practice in natural environments - then another block. Make tier 2 level entitlements set according to diagnosis level and type - eg for all children with. CP level 1-5 they will get 20 sessions to be used with allied health therapists as needed. eg family may say my child will need 10 Physio, 5 speech, 5 OT. whereas another family might say 'my child needs 10 OT, and 10 Physio.
3. Tier 3 level supports - additional funding when child is going through a known transition eg preschool school - might entitle the child to an additional 6 OT sessions
4, Tier 4 level supports - Might be an additional level of funding for those children with high support needs eg CP Level 3-5.

Support families using a key worker model - have people in the community who have a combination of lived experience/ qualifications linked into a family to provide ongoing support/ advocacy and therapy linking if needed.
Supports should be provided in natural contexts and the child's daily routine, as opposed to therapy clinics.
Use the services of early childhood special education teachers.
Support workers should be accredited if they want to support young children. They should have to go through an assessment of some kind to see whether they are suitable to support a child with that particular diagnosis - too many support workers are supporting children and putting them at risk. they don't know about best practice guidelines, behaviour management etc. Families could search for a support worker who is accredited in using AAC systems, or feeding difficulties, challenging behaviour if they wanted to ensure their child is in good hands.

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

There are too many providers out there who don't have the skills to support the people they are providing a service too. For example, there are providers who set up 'social and community groups for PWD' yet they don't have basic knowledge of the conditions of their PWD. It's a money making venture.
An accreditation system would help this situation - eg a provider could get 3 stars out of 5 for supporting people who are Deaf/Hard of Hearing, 4 stars for supporting those with intellectual disability, and 5 stars for supporting those with MS. There could even be a rating for supporting children under 5 years with medical needs etc. This would help families make an informed choice.

How should outcomes and performance be measured and shared?

All providers should be keeping mandatory data on the participants goals, baseline and progress - if for example they are providing a therapy service to a client. Keeping in mind that this data could be very different for a person with very severe disabilities compared to a PWD who was wanting to improve emotional regulation.

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

Support workers that provide 'social and community access' are in a lot of cases seeing as easy job, great pay. A chance to catch a 'free movie' some downtime, have a cuppa. The focus isn't on 'what can we do to support the PWD to make there own longer term social connections, there own friends etc. Of course this isn't the case with all social and community support workers - some are doing an amazing job, but the rest.....

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

You don't hear from you LAC - once you get a plan that's it - never to be heard of/seen again - until it's time to get a new plan.

Maybe use a voucher system - rather than offering 'money' in people's plans - translate these into vouchers.
So currently 1 therapy session = $193 = 1 voucher. The NDIS allocates your funding in the 'number of vouchers' they give you, once a service has been provided you scan that voucher code - which is then directed back to the NDIS as 'payment'. This would cut down on fraud also, and having to worry about payment of invoices.

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

An accreditation system for support workers - especially those supporting young children, and those with high support needs.
Rather than allocate money in a persons plan - they are allocated 'vouchers to use' which they scan back as payment for a service provided. Think Covid vouchers.
Key worker allocated to each participant to support them through there NDIS journey - person would have the same disability/lived experience as person they're supporting.
All children in Australia get xxx amount of sessions with an allied health therapist / year - speech, OT, Physio etc to use if needed.
This amt is then increased by an additional amt of sessions if your child has a diagnosed disability/ concern
The amt is then increased again if your child/PWD is going through a particular life stage eg transition from preschool - school
This amt is then increased again for those with severe and high support needs.