Waiting for assistive technology and planning delays in the NDIS | External submission

September 2019

Authors: Daneille Gathercole, mother of 3 year old participant, Paul Ibrahim, father of 10 year old participant, Yildiz Kaygusuz, mother of 9 year old participant, name withheld Munirah Sulaiman, mother of 3 year old participant,

Shayna Gavin, Physiotherapist, Splash Physiotherapy, Melbourne

ABOUT THE AUTHORS:

Danielle Gathercole

Mother to a 3 year old new participant in the NDIS having recently completed eligibility and initial planning processes

Yildiz Kaygusuz

Mother of 9 year old participant in the NDIS since December 2016. They are on their 4th NDIS plan and preparing for the planning meeting for their 5th and have been waiting for assistive technology since 2017, for over 2 years.

Munirah Sulaiman

Mother of a 3 year 9 month old participant in the NDIS since December 2017. They are on their 3rd NDIS plan and have been waiting for assistive technology since 2017, for over 2 years.

Paul Ibrahim

Father of a 10 year old participant in the NDIS since 2016, currently on their 5th NDIS plan.

Shayna Gavin

Physiotherapist with 17 years’ experience working with babies through to adults with disabilities in the community in urban, rural and remote Australia. She holds ‘red level’ prescriber status under SWEP (State Wide Equipment Program), meaning that assistive technology applications were approved without being seen by their clinical advisor, in recognition of skills and experience. At Splash Physiotherapy: We see babies, children and young people with disabilities, aiming to help them participate through increasing their functional skills in everyday life. We focus on participation at home, the community, education and active leisure settings, and include capacity building for the family as integral to our service.

The content of this submission is by Shayna Gavin unless specified as quoting co-authors. Informed consent has been gained for the use of case information, quotes and names.

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DEFINITIONS & ABBREVIATIONS:

For the purpose of this submission we assume the term ‘planners’ refers to:

Early Childhood Early Intervention Partners (ECEI partners)
Local Area Coordinators (LACs)
NDIA delegates who assess submissions made by ECEI partners and LACs, make decisions and finalise plans. Other common abbreviations:
Allied Health Professionals (AHPs) here refers to physiotherapists, occupational therapists and speech pathologists
Assistive Technology (AT) is the language the NDIA uses to describe equipment specifically used to increase independence and / or accessibility
ICF refers to the World Health Organisation’s International Classification of Function, Health and Disability (2001) https://www.who.int/classifications/icf/en/
State Wide Equipment Program (SWEP), the Victorian AT program which the NDIA ceased a reciprocal relationship with in July
The NDIS price guide is typically reviewed each financial year and includes policies regarding funded supports https://www.ndis.gov.au/providers/price-guides-and information

CONTENTS:

p. 3 Summary p. 4 SECTION A: the experience, expertise and qualifications of planners p. 6 SECTION B: the ability of planners to understand and address complex needs p. 9 SECTION C: the ongoing training and professional development of planners p. 10 SECTION D: the overall number of planners relative to the demand for plans p. 11 SECTION E: participant involvement in planning processes and the efficacy of introducing draft plans

p. 12 SECTION F: the incidence, severity and impact of plan gaps p. 13 SECTION G: the reassessment process, including the incidence and impact of funding changes

p. 15 SECTION H: the review process and means to streamline it p. 16 SECTION I: the incidence of appeals to the AAT and possible measures to reduce the number

p. 17 SECTION J: the circumstances in which plans could be automatically rolled- over

p. 17 SECTION K: the circumstances in which longer plans could be introduced p. 17 SECTION L: the adequacy of the planning process for rural and regional participants

p. 18 SECTION M: any other related matters Page of219

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SUMMARY:

The NDIA is changing the face of disability in Australia for the better, and children born with a disability now have a much richer future to look forward to than children born even 10 years ago. However as participants and providers, we need to speak up about issues with the Scheme so that it can become fairer and more accurately address participants’ needs.

The current planning process is opaque, convoluted and often unfair. The end goal of participants being as independent as possible, through building their capacity and that of their families, is often not reflected in the plans are given. The role of AHPs and AT in achieving this outcome appears to be poorly understood or valued. Families with higher education, english as a first language, and time to put into the planning process often receive larger plans. Frequent changes to policy are often communicated internally, by word of mouth, or at verbal NDIA presentations, and are not published on a publicly accessible website. The planners are often not up to date with changes to NDIA policy eg. the most recent price guide, therefore basing their recommendations on outdated or inaccurate beliefs, and inadvertently spreading misinformation to participants and their families. The criteria that coordinators and NDIA delegates consider plans against are not made public. They often have little understanding of disability, including basic principles such as the social model of disability, the validity in focussing on participation goals, the role of assistive technology, or childhood development. Planners often do not appear to understand or value the role of AHPs and AT in building capacity for children with disability. Planners insert their own opinion and prejudice into meetings, creating stress for families, spreading misinformation and leading to poorer outcomes. Planners make dismissive comments without understanding individual circumstances eg. AT items will not be funded, types of capacity building supports are not needed.

Participants have no opportunity to review their planner’s report before it is sent to the NDIA delegate.

The NDIA delegate makes their assessment based on the planner’s report. They similarly often appear to misunderstand or not read supporting documentation. When they wish for additional information, the AHP is not contacted directly, but through the planner, often with misunderstandings during the back and forth communication. Often the information requested is already contained in provided reports.

Complaints made about the planning process are rarely responded to. There is no opportunity for participants to see a draft plan and clarify any inaccuracies with the NDIS delegate. The review / appeals process is frequently changed, poorly and minimally explained on the NDIA website, and slow to act.

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The NDIA planning process should be:

transparent: timelines, criteria, complaints and review processes should be clearly explained in plain English on an easy to find page of the NDIA website
performed by planners with skills and understanding of disability, the social model of disability, the ICF model (including participation, function, body structure and function, personal and environmental barriers and facilitators including assistive technology and support workers), childhood development
reviewed in draft form by the participant / their representative to prevent unnecessary, lengthy and stressful review processes
reviewed by NDIA delegates with expertise in disability, as suggested for the planners
able to include direct communication between the people making decisions (the NDIA delegate and the planners) with the participant / their representative, and any AHPs they have queries for
timely and clearly communicated
easy to question when things go wrong
supported by a responsive complaints process SECTION A: the experience, expertise and qualifications of planners

Planners appear to have variable levels of experience, expertise and qualifications. I have met ECEI partners who have previously worked as physiotherapists, OTs and speech pathologists in Early Childhood Intervention Services who have been extremely helpful and supportive to families.

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In contrast, I have met an OT with two years’ experience in Workers Compensation claims with adults before starting as an ECEI partner; and another ECI partner without a health or disability background who has previously worked as a support worker with adults with disabilities and advised he had no knowledge of child development or needs.

Of note planners frequently ask AHPs for further information, which is already included in the report or AT application under relevant headings. The reason for this is not clear.

Planners are not up to date with changes to NDIS policy. eg. family was told that therapist travel was not covered. The policy for this has been explicitly documented in all NDIS price guides, and was updated in the most recent 19 - 20 guide. eg. family was asked to have his therapists re - write our AT applications on to the NDIS AT forms. The NDIS AT website states that use of their forms is not required as long as the information is covered. In this instance we had applied for items under the SWEP portal. The NDIS had not made decisions on these applications. When the planning meeting occured, the NDIS had dissolved its relationship with SWEP for managing AT applications. The agreement had been that SWEP would forward all unfinished applications to the NDIS. We had provided pdf copies of all applications so they had all the information they needed. We argued that re-formatting the information was an ineffective use of NDIS funds that could otherwise be spent on therapy. eg. Yildiz found their planner confused one of the Reasonable and Necessary criteria which states that everyday expenses are not covered. A standard off the shelf bicycle and helmet would be purchased for any child and is not eligible for NDIS funding. However a specialised customised tricycle to make bike riding accessible for a child with a disability is eligible, despite a family being told otherwise. eg. Planners have told families that therapists cannot charge for non contact work. This is not true, and was detailed in the 18-19 price guide, and again in the 19-20 price guide. This creates stress for the families, and the AHPs, and disrupts the trust relationship between the two.

This is expanded upon in section B as most participants we work with have complex needs.

Planners should:

have skills and understanding of disability, the social model of disability, the ICF model (including participation, function, body structure and function, personal and environmental barriers and facilitators including assistive technology and support workers), childhood development
be skilled in communicating with a wide variety of people, empathetic to the stressful process, and able to use a variety of communication methods
up to date with frequent changes to NDIS policy
be clear on the limitations of their role and refrain from providing professional advice which would require Professional Indemnity Insurance
be supported by their workplaces to have sufficient time to go through reports and applications
be supported by their workplaces to communicate directly with AHPs where they have further queries after going through reports and applications

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SECTION B: the ability of planners to understand and address complex needs

Due to lack of experience and expertise of planners, and the process they are required to go through, they often appear to struggle to understand and address complex needs.

They often:

do not understand or value the role of different AHPs, despite being provided with reports
do not understand or value the role of Assistive Technology, despite being provided with AT applications
struggle to put together the multiple strands of supports required for people with complex needs into a whole picture
often appear to consider minimum level of supports to prevent injury or death, rather than increasing quality of life, participation in everyday life, and opportunity for participants and their informal supports (generally family members) to rejoin or increase their involvement in the workforce.

Example: (understanding roles of AHPs; misinformation re NDIS policy; individual needs) family had been using a combination of Betterstart and self funding for an early intervention therapy team that was helping him make exciting gains. His physio, OT and speech pathologist had established rapport; got along well with him and his family; complemented his kinder program; were building family capacity; and had completed detailed reports to assist in goal setting the the NDIS initial planning process. His planner advised his family to swap to an ABA program. There was no evidence that this was required for his goals and needs, and there was no evidence from his lived experience that this would be effective. This was inappropriate and unprofessional and caused the family a great deal of stress and worry. Danielle“Iwas givenGathercoleadvice fromsays:a non professional planner that went against advice from our professionals, that made me feel disempowered and intimidated that I was not making the right decisions for my child moving forward, even though I have a full support team of professionals behind me.” Danielle was also told that the planners had a set number of hours they were advised to typically give to children in early intervention. This did not show an attempt to understand his specific needs and creation of a plan to meet them. After further conversations between the planning organisation, the family and myself where we clarified a number of instances of misinformation from the planners, has received a plan that will meet his needs and give him the best chance to achieve his goals. However this would not have been possible without his mother having the time, education, English and communication skills to continue to engage with the process; nor without my volunteering my time to assist (which is important to consider in terms of market stability if AHPs are attempting to provide support services without charging).

Example: (understanding and valuing role of AHPs and AT)

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family did not have AHP support in the lead up to their initial planning meeting as they were not able to self fund this. They were not supported with an interpreter and did not have supports in preparation to the meeting. They reported the planner was ‘very nice’ but then were shocked and very disappointed at the plan they received. They received insufficient capacity building early intervention funds to meet her needs across all developmental areas. Basic AT needs were not identified (such as a walker). We identified this when they commenced physiotherapy with us, trialled and applied for a walker, however received no response. Due to lack of AT her ability deteriorated, and she needed a re - trial resulting in a more supportive walker being recommended (at more than 5 times the original walker’s cost). Despite going through the NDIA’s complaints process, as well as bringing this to the Minister, this 3 year 9 month old’s walker has only now been approved and is on order with the supplier. She has missed 2 years of vital early intervention where she should have been gaining her independence. It is not unreasonable to forecast that she will have less independence as an adult as a result. Munirah Sulaiman, mother, says of the planning meetings: “They just ask questions about what she can do at the moment. They don’t get into details about her skills. They don’t understand her disability, and her goals and what she needs. They didn’t think she needed the equipment. They think it’s not very serious about the equipment. They didn’t put the equipment on the plan. They put some hours for physio OT and speech pathologist but not the equipment. We have been waiting for more than 2 years for a walker for my child. She is now 3 years 9 months. Because she didn’t get her walker yet, it slows her development down. We had to ask for a more supportive walker when they didn’t give the first one. She really wants to walk but she can’t walk without that support. She got her AFOs but if we get that equipment it will be very helpful for her.”

Example: All families are experts in their children, but with complex needs his family are the absolute experts. They have experience in health and disability, English as a first language and experience in advocating for their son. They also have other children with disability and illness, and put as much time as possible towards their planning process. has had multiple plan reviews due to the planners leaving out AT items that have been requested, discussed, trialled and applied for. He has insufficient funding to see the progress in his goals that his family and AHPs know is possible. His family should not have to put in further hours to achieve a sufficient plan. The planners should have the skills to work with the family and the AHPs’ reports to determine what is needed.

Example: 9 year old (misinformation, role of AT and AHPs) This family was given misinformation from a planner who advised he was new to working with children (when the child was 6 and under early intervention). Despite seeing evidence of successful trial in an AT application, he did not understand the difference between an off the shelf bike, and the need for a specialised tricycle for a child who needs to use a walking aid for mobility. Yildiz Kaygusuz says: “The planner told us that a bike to meet my (then 7 year old) child’s needs would not be funded.”

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The plan received by the family was very small in comparison to those I have seen received by other participants with similar needs. This meant his family had to attempt the review process, and also were unable to address all of their child’s developmental needs. Yildiz Kaygusuz says: “The planner didn’t believe my child didn’t need services from multiple professionals. He only gave us enough funding for one. My child has complex needs, with two diagnoses, and his goals need to be supported by speech pathology, OT and physiotherapy.”

Example: (understanding complex needs, supporting return to work for informal supports) This family report having difficulty with planners understanding his needs and how they can be supported. Paul Ibrahim says: “They kind of put cerebral palsy in one bag, and don’t see that everyone is different. And they don’t understand how high his needs are. “Because he’s such a complex case, and even if it was less complex, they don’t have enough experience or life experience with children of these complex needs. That’s what makes it so hard.

The last planner said he should only have assistants. I said he needs a physiotherapist, because of his complex learning and safety needs that change moment to moment. For example I was explaining about his sensory needs. TheTheyplannerobviouslyasked,had ‘Oh,no understandingwhy would heofbekidssensitivewith highin thatsensoryenvironment?’needs, combined with physical, communication and regulation needs.

They don’t understand what’s going on at our level and that makes it difficult. For us, I work 6 or 7 days and my wife looks after and my younger daughter. The planners have made comments saying that my wife should be able to work and look after and our daughter. My argument has been to give us funding for support workers in the morning and afternoon, so she can return to work. There is also no family network here to support us. At the moment I am the only one providing. From her perspective, to have a break from her caring role, and return to her career, will be extremely powerful. Even for me, I am having to get up to 3 or 4 times many nights on top of working more than full time.”

Planners should:

all be experienced in working with participants with complex needs, as by definition, all participants of the NDIS have complex needs
understand the social model of disability and the ICF model to assist in their understanding of each individual’s needs as a whole picture
assess each individual on their merits Page of819

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SECTION C: the ongoing training and professional development of planners

The planners are often not up to date with changes to NDIA policy eg. the most recent price guide, therefore basing their recommendations on outdated or inaccurate beliefs, and inadvertently spread misinformation to participants and their families. For example families we work with have been told:

travel for capacity building providers is not funded by the NDIS (this is not true going by the 2019 - 20 price guide released 9/7/19). eg. This was experienced by family
bicycles are not provided. Certainly off the shelf bicycles and helmets would not meet Reasonable and Necessary criteria as they are an everyday expense for children. However custom made tricycles which provide the supports for a child with a physical disability to engage in riding fall under AT and are certainly funded
see Section B for example where a family was told to swap from an AHP team to ABA

Planners are often ignorant to basic facts about disability For example families we work with have been asked:

is Down Syndrome a permanent condition? (Genetic conditions such as Trisomy 21 are not curable and are permanent)
Paul Ibrahim says: “They kind of put cerebral palsy in one bag, and don’t see that everyone is different. And they don’t understand how high his needs are.”
why does he need to be able to go out in the community? (Because of the importance of the social model of disability, inclusion, participation)
why don’t you find a disability specific swimming program? (Because of the importance of the social model of disability, inclusion, participation)
“why would he be sensitive in that environment?” (not understanding sensory processing difficulties as a concept)
“He should just have assistants, there’s no need for physios or OTs” (Where assistants would be unsafe and ineffective)

Planners are often ignorant to basic facts about childhood development: For example families we work with have been told:

planners have only previously worked with adults and have not had training in completing Early Intervention plans
“he will learn to ride a bike on his own, my son did” (every child is different, and also comparisons of typically developing children with those with a disability is inappropriate)
a number of families have been declined AT applications for corner chairs which support sitting on the floor. This is a developmentally appropriate position for young children, and vital for inclusion and development of skills in play, gross motor, fine motor, language and social skills with siblings at home, leading to childcare and kinder. This shows a lack of understanding of child development.

Planners are often ignorant to basic facts about assistive technology: For example families we work with have been told:

our AT application for a walker explained why two other options were not viable. The planner arrange a hire of a walker similar to one we had decided against, from a different

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brand. They did not compare the features of the walkers, and did not consult me as the prescriber or the family.

planners did not believe that AT items were required eg. see case in section B
Yildiz Kaygusuz says: “The planner told us a specialised tricycle would not be funded for our 9 year old child and we should pay out of pocket. The trike was applied for in 2017. He also did not approve the walker which is a replacement for one he has grown out of and has frequent falls with; nor the wheelchair which is a a replacement for a child sized pram. Our physiotherapist applied for these in 2018. We have been waiting over 1 year and this has still not been addressed. I am worried about this delaying his independence in mobility and exercise and participation in the community, especially socialising with cousins and friends. We have gone through the complaints process and even spoke to the MP about this but never heard back.” I was reassured by a staffer from the MP’s office that all of the 4 families we went to them about had had their issues resolved. 3 of the families still do not have their needs met and 2 of the families are represented in this submission.
Paul Ibrahim says: “When we asked for a standing frame at home, they said, ‘doesn’t he get that at school?’ We want to speed up his progress. They don’t get in a standing frame every day at school. Isn’t that the purpose of this NDIS? To help him become more independent?”

Planners cannot be expected to be experts across all fields. However if they are responsible for making decisions about what is ‘reasonable and necessary’ they need adequate understanding of these areas, and to value to input from families and AHPs who have more expertise than them in specific areas. The organisations the NDIA contracts out the role of ECEI partners and LACs, and the NDIA delegates finalising plans, need to update their skill base.

SECTION D: the overall number of planners relative to the demand for plans

There appears to be insufficient numbers of planners. Children in roll out areas have been commonly waiting 6-15 months in our experience to receive their first meeting.

A major risk of attempting to rapidly increase the planning workforce is lack of skill and expertise.

When the start date for eligibility for $10,000 interim plans were announced for children needing early intervention who had a wait of more than 50 days, more children were picked up by the standard NDIS process ahead of this deadline. The ECEI partner responsible for planning process flew a planner in from interstate.

Danielle Gathercole says: “My planner was from flown down from interstate as they were short on planners and unable to meet demand”.

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Yildiz Kaygusuz says: “We were given a 3 month plan because they didn’t have time to come and do our review meeting. That meant a further delay in having our AT needs looked at because we didn’t hear back from our review.”

The organisations the NDIA contracts out the role of ECEI partners and LACs need to work on recruitment and retention of planners including appropriate up skilling to meet demand in roll out areas.

SECTION E: participant involvement in planning processes and the efficacy of introducing draft plans

Initial planning process:

We commonly meet families new to the NDIS frightened about the low amount of funding provided. They have been given misinformation eg. they can’t use their budget for any goals other than those specifically listed in the plan, and would need to self fund physiotherapy outside of this. In contrast, the goals are generally broadly written to cover developmental areas (eg to improve independence in mobility) deliberately to allow participants / families to develop more specific goals with their therapists and revise these as needs change across the course of the year. eg. plans are written describing capacity building therapy as being for OT. The family are then upset they can’t use it for speech pathology and physiotherapy. Upon checking that the budget is not ‘stated’ they are reassured they can use it for any combination of AHP they feel they need. Planners I have discussed this with advise that comments in the capacity building description are a suggestion, not a limitation. However this is not clear in the way that the plans are written.

Draft plans:

I have worked with only one participant who was part of the trial to see their draft plan. It was extremely beneficial as they were able to:

address a gap where an AT item had been left out (which had already been trialled and applied for)
address misunderstandings of the planner / NDIS delegate themselves and with their AHPs, so that items initially rejected from the plan were included
this saved a lengthly review process Regarding participant involvement:
the NDIA website information is too vague to be of assistance
the criteria being assessed against are not publicly available limiting ability to prepare
participants / their representatives are asked at the meeting if they wish to be self / plan / agency managed, without full disclosure about the relative positives and limitations of each. They are expected to make a decision on the spot. Multiple families have reported feeling pressured in to one particular plan management type (agency managed).

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meetings are scheduled at different time points eg 9 months, 12 months, or sometimes after the plan has expired. Sufficient consideration is not always given to difficulties participants can face eg. working on foundation skills for 6 months to then work towards their goals, which may not be achieved at a 9 month review. eg. not considering the spending rate of the participant where they have sat on wait lists for services.
meetings are scheduled with little notice and flexibility. If a review appointment is scheduled earlier than expected, with less than one week’s notice, it is a huge amount of pressure on the family and AHPs to rush and prepare. It would be more respectful to set the date at least 1 month ahead

Daniellel Gathercole says: “I was advised that I couldn’t have a hard or electronic copy of NDIS plan before approval. This would have aided myself to making sure I have made all the right decisions and nothing is missed in the planning stage. e.g I am concerned that the approved plan does not list any assistive technologies that I asked for in planning meeting. It only lists assessment hours which is not specific or transparent.”

Yildiz Kaygusuz says: “I did request to see the draft plan but never heard back. I think we could have fixed these problems before the plan was finalised and my 9 year old child could have received the therapy and equipment he needed for his independence.”

Paul Ibrahim says: “For the first plan, I asked to see the draft before it was finalised, and the planner said they would go over it with me but never did. We had spent 1.5 hours discussing in a meeting. Then that was the worst plan we have had. It felt like they didn’t care, and just wanted to get us onto a plan whether it was right or not. We needed to have it reviewed. We could have saved all that stress and effort if we had seen the draft.”

SECTION F: the incidence, severity and impact of plan gaps

Plan gaps have had a devastating effect on participants and providers. -Inweourhaveexperience:ongoing high debt from the NDIS where we were advised in writing to continue providing a service during a plan gap as we would be reimbursed, but have not been

we then ceased seeing families during plan gaps which interrupts service and progress
mental health stressors to participants / families and AHPs
AHPs volunteering their time when a family is in crisis in a plan gap
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SECTION G: the reassessment process, including the incidence and impact of funding changes

We assume “reassessment” refers to when a plan is nearing its end, and a meeting is set to plan for their next NDIS plan (referred to as a ‘planning meeting’).

Many families are not receiving review dates until the end of their plan and struggling with gaps in their plans (see section F).

In contrast now we are seeing families being asked to do their reviews with one week’s notice, very early at the 9 month mark.

this does not give time to complete reports to support the review process
we have been typically commencing reassessments for reports in the 9th or 10th month of the plan so they are ready when reviews come around. To start this even earlier means we are reporting on only partially achieved goals.

We have described issues with poor initial plans in Section E.

Generally families are experiencing better outcomes on subsequent plans. It appears that the NDIA does not listen to families in the first instance. However when we report that goals were not achieved or safety issues have arisen due to lack of funding, subsequent plans are generally higher. There is an issue here in giving credibility to participants, their families, and AHPs in the first instance when an individual participant’s needs are described.

eg Paul Ibrahim says: Our first plan was ‘stated’ with lots of assistant hours and very few therapist hours. The budget was okay to get started, but we couldn’t use it the way we needed to. They didn’t realise that assistants work under a therapist, they’re not a replacement. We found that needs couldn’t be met by an assistant. He didn’t meet many of his goals, because they didn’t have the skills for his specific learning needs. In future plans, we have been given more capacity building budget, and it has not been quarantined for assistant hours. We have achieved far more in recent plans because we have been able to match the therapist to needs.”

This is not always the case. See case described in Section B. A walker (among other items) was not identified as a basic AT need in the initial planning meeting. We identified these gaps on our first session with her family and began the trial and application process. When there were long delays we re - trialled the walker due to concerns her ability had deteriorated. She could no longer manage the walker we had initially prescribed. We did new trials and applications for a much more supportive walker, costing 5 times more, which was required for her to be independent.

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We were careful to flag this was a replacement to the previous application at every step (in submitting the application, in going for reviews, in complaints to the NDIA and to the MP, and to the supplier.) Last month the original application from 2017 was approved which is no longer useful to The correct walker has also now been finally approved and is on order. Munirah Sulaiman says: “Even on our next plan they didn’t listen to us and didn’t give funding for the equipment that needs. I don’t think they read the application assessment about the walker. On our last plan it was listed as ‘quote required’ but the physio had already done the application and given the quote. Then they took a very long time to put this on the plan. It was another 7 months until they told the supplier to order the walker. They also have just now approved the wrong walker.”

The planning meeting process is stressful for most families. Paul Ibrahim says:

regarding reports and AT applications: “They asked for all of this information that was already in front of them in our physio and OT reports and AT applications. I don’t think that they fully understand the reports that the therapists take the time to write. They write them in plain English, I understand them. But the planners don’t understand enough about disability to get it. When we went to one planning meeting with our support coordinator, she flagged we had already sent reports in beforehand, and they had not been looked at. The planner asked us to tell what is in them, you can tell they haven’t read it. It shouldn’t be so difficult. We prepare. We pay out of his plan to get reports to assist the planning process. I don’t know if they even read them.
regarding ease of communication: Paul“WegenerallyIbrahim says:have to push and struggle to get AT and therapy across the line, we need to explain every detail. It’s quite obvious, he doesn’t walk, so he needs a wheelchair. I don’t know why they don’t understand this. It doesn’t feel like there’s any compassion at all or understanding.Thelast time I was there for a planning meeting I was quite angry and walked out. It seems like they just need to follow the status quo. I think unless you have enough experience in doing planning meetings, you don’t know what is needed until you get there. They only give you a few weeks’ notice to get everything finalised. They are making decisions at that meeting. If family hasn’t done a plan before or have good therapists and support network, they don’t know what to expect. They are not told in advance what to cover, it’s like a minefield. The NDIS certainly don’t tell you. You need to do our own research. I found that if you say one thing wrong they will use it against you. I have to be very careful when I go in there. That is the feeling I get especially after the first plan, that I need to be very careful to word things correctly. I feel like if I say something wrong then he might not get what he needs.”
regarding the difference between education and disability: Page of1419

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Paul Ibrahim says: “When we first started the planner asked if it was really necessary for him to have physio andTheyOTdon’ttherapy?understandThey howasked,what‘Doesn’ta Specialhe getDevelopmentalthat at school?’School provides is different to capacity building therapy under the NDIS. Our physio and OT are able to work on our independence goals, and help with AT for home. School based therapy is very limited and is only to support the education curriculum. We have to do much explaining because they don’t get it. They make it out like school is the therapy room and it is not. Everything is a battle to get through. It’s exhausting. Having the NDIS is definitely better than it was before. He didn’t have therapy for 3 years before the NDIS, so this is definitely better. But the planners need to be trained better so it is less stressful for families to get funding for their children.”

to improve the review process: Paul Ibrahim says: “I think we need more notice and flexibility in our planning meeting date and time. I need to get time off work and arrange reports from our therapists, and prepare our goals and what we will ask for. The planners need to read the reports. I would like to review only the sections that need changes. Every planning meeting, I feel like we could lose everything. We need to advocate for our son again and again. I understand they need reports to know how the budget has been spent. But if capacity building and core supports budget is fine, I would like to only review the AT section.”

SECTION H: the review process and means to streamline it

We assume this refers to when a participant has a concern about the plan they have received and need to request a change, and ask for a “review”.

I don’t feel the complaints and escalation process is transparent, especially where no response has been received regarding a complaint. Options should be spelled out clearly on a page easy to find on the NDIA website eg. with the planning organisation, the NDIA complaints, the NDIA AT section, your local NDIA office, the Quality and Safety Commission, the Disability Ombudsman, your local MP, the MP covering the NDIS etc

The types of reviews are not clearly explained on the website. It is only through word of mouth between providers that we are recommended to suggest families ask for “reviews within 3 months” and “soft touch reviews”, only to be told by planners that the type of review no longer exists.

Most of the families we know of who have applied for a review have not received a response. It appears that the issues are left until they are due for their next planning meeting.

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Yildiz Kaygusuz says: “The review process is not effective. We never had a response. We feel forgotten and ignored.”

Munirah Sulaiman says: “They didn’t really consider our complaints. They didn’t reply to us. They just do what they needed to do I think.”

The review process could be improved:

Make it transparent by publishing the review and escalation processes on the NDIA website easy to find (eg. in NDIA, the planner’s organisation, to the Ombudsman, and to the NDIA’s Quality and Safeguards Commission, and to MPs)
Set timelines when they will receive an answer by
Communicate with AHPs when unsure about the reasoning behind a capacity building or AT request
Recognise the expertise of the AHPs writing reports and carefully consider impacts of insufficient funding for the participant
Address the unhelpful culture created by the NDIA which pits the agency, providers and participants against each other. This is exacerbated by lack of transparency throughout all processes
Discuss, and if required meet, with participants regarding their concerns with the current plan and reasons for review
Allow an easy review process when AT needs to be added or altered, without going through a full plan review or waiting months
Stop leaving plan review requests until the end of plan review meeting. Participants deserve answers in a timely fashion and may need to be acted upon quickly.
Include processes for review of draft plans before they are finalised so issues can be addressed at the onset without need for timely, stressful and costly review processes 10.

SECTION I: the incidence of appeals to the AAT and possible measures to reduce the number

The co-authors of this submission have not been involved in these. To be eligible to go to the AAT you need have been through an NDIS review process and have received an outcome that you still disagree with. The families cited in the examples here have not received responses to their reviews, so have not been eligible to go to the AAT, and instead have been left waiting. Measures described where there is improved communication and skills would lead to fewer desperate feeling participants / families feeling the AAT was their only option.

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SECTION J: the circumstances in which plans could be automatically rolled-over

Where participants’ needs are stable and effective, and where AT is unlikely to need replacing, roll over plans will reduced administrative burden on them, their families, their AHPs, and the NDIA. A process to highlight unexpected issues though should be more plainly explained and easier to access.

Paul says: “We would like rolled over plans unless think need a review to change any items. It would be great to just review the sections needed eg AT only. I understand they need to check progress, and reports and questions as an update is fine. But we should not be asked to re

advocate for therapy again when it is working. I feel like all the sports could be taken away each time.”

Planning meetings could:

Consider ‘rolling over’ sections of plan that are meeting a participant’s needs (eg. core supports) and only reviewing sections needing changes (eg. AT).
Reduce repetitive questions
Explore how to reduce the fear participants feel that their funding can be taken away at a review. There is a lack of trust that the NDIA will do the right thing by participants, either by a deliberate decision or by accident or misunderstanding.

SECTION K: the circumstances in which longer plans could be introduced

Where participants’ needs are stable and effective, and where AT is unlikely to need replacing, longer over plans could be effective, will reduce administrative burden on them, their families, their AHPs, and the NDIA. A process to highlight unexpected issues though should be more plainly explained and easier to access.

SECTION L: the adequacy of the planning process for rural and regional participants

Similar issues occur for rural participants except accessing services can be more difficult in thin markets with travel requirements Some of our families live an hour away from Melbourne with limited services. There should be recognition of the need to allow for travel to outer suburbs to meet specific needs and to allow for participant choice and control.

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SECTION M: any other related matters

Lack of transparency: Frequent changes to policy are often communicated internally, by word of mouth, or at verbal NDIA presentations, and are not published on a publicly accessible website. The criteria that coordinators and NDIA delegates consider plans against are not made public. Lack of transparency is an ongoing theme across all NDIA processes eg eligibility, planning, reviews, AT applications
Risk and insurance issue with changes to AHP prescriptions When AHPs make AT prescriptions, our decisions fall under our Professional Indemnity insurance. Changes to our AT prescriptions cannot be made without our involvement as the qualified AHP. If a planner or NDIA delegate make changes, they will be assuming the risk of injury or death to the participant, caregiver or bystanders if there is an issue with the item. This is not understood by the NDIA and poses a significant risk, as it is a common occurrence.
The “Greedy Provider” narrative This is an ongoing issue throughout working with the NDIA. Regarding planning, families often report to us that planners say in their meetings “Oh the providers always ask for too much, you won’t get that much”. This is dismissive and inappropriate, without considering the individual’s needs. Families have also reported comments from planners indicating they feel we are on a ‘money grab’ when writing reports with recommendations for further physiotherapy or AT. It is important to note that we receive no financial income through prescribing AT items. Also when we help a family in advocating for their child’s needs in a planning process, this is for all their needs (eg. support workers, other AHPs, community services, and AT). The assistance we give benefits many providers other than ourselves. We are bound by the

Australian Health Practitioner Regulation Agency and the Australian Physiotherapy

Association codes of conduct regarding provision of services to meet a clinically justifiable need, and not to over - service for monetary gain. The view that all providers are greedy is a corrosive and inaccurate belief that discourages a cooperative working relationship between the NDIA, providers and families.

The AT trial The current AT trial in NSW includes AHPs making assessments of participants who do not know them, their individual circumstances or environment. I have encountered AHPs with very limited clinical experience in these roles, eg from a Compensable Bodies background making decisions about AT for children with disability. In the Victorian Statewide Equipment Program (SWEP) an AHP with experience only with adults would have had all their prescriptions checked by a clinical advisor. It does not make sense that people with

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insufficient skills are making such important decisions with high cost and risk profiles. I feel this is part of the planning process conversation because the AHP working with the family should be able to include AT applications and have them addressed in the planning process without additional processes.

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