Response to the inquiry on the NDI

by the Joint Standing Committee

13 September 2018

Contact details:

For more information please contact:

• Melissa Noonan, Chief Executive Officer
• Limbs 4 Life Incorporated
• PO Box 282 Doncaster Heights VIC 3109
• 1300 78 2231
• www.limbs4life.org.au

1 Limbs 4 Life Inc. | Submission to the Joint Standing Committee on the Provision of Assistive Technology NDIS

Contents

Executive Summary ……………………………………………………………………………………………………………….. 3

1. Introduction …………………………………………………………………………………………………………………… 5

2. Overview ……………………………………………………………………………………………………………………….. 5

3. Our population ………………………………………………………………………………………………………………. 6

4. Transitioning into the NDIS for people with limb loss ………………………………………………………… 7

Recommendations: ………………………………………………………………………………………………………….. 10

5. Educating, empowering and upskilling Participants …………………………………………………………. 11

Recommendations: ………………………………………………………………………………………………………….. 14

6. Funding in Plans do not reflect Participant needs ……………………………………………………………. 14

Recommendations: ………………………………………………………………………………………………………….. 15

7. Facilitating emergencies and managing delays ………………………………………………………………… 15

Recommendations: ………………………………………………………………………………………………………….. 16

8. Access to Prosthetic Service Providers ……………………………………………………………………………. 16

Recommendation: ……………………………………………………………………………………………………………. 17

References ………………………………………………………………………………………………………………………….. 17

2 Limbs 4 Life Inc. | Submission to the Joint Standing Committee on the Provision of Assistive Technology NDIS

Executive Summary

Limbs 4 Life believes that the National Disability Insurance Scheme (NDIS) can provide members of the Australian community living with limb loss better opportunities to lead an ordinary life. The system as it currently stands needs modification to best meet the individualised needs (goals) of people with disabilities, ensure that Participants have choice and control when making decisions about their Plan and provide functional-based outcomes in a timely and effective manner. In this way people will be able to live the life they want while also participating at social, community and economic levels.

Participants need access to individuals with lived experience (their peers) to assist them with the transition process, build skills and capacity and, support them to identify and clearly articulate their goals of living an ordinary and fulfilling life. The underpinning tenet of the NDIS is “to give all Australians peace of mind that if their child or loved one is born with or acquires a permanent and significant disability they will get the support they need” and as it relates to people living with limb loss we believe this is achievable through due consideration of the recommendations made by Limbs 4 Life and the Participants we represent.

Limbs 4 Life is willing to work with and support the overarching goals of the NDIS to ensure that the benefits that this Scheme can bring are efficient and effective outcomes for all Australians living with limb loss/deficiency.

Within this submission the following five key issues, with associated recommendations, have been provided:

Issue 1: Transitioning into the NDIS for people with limb loss

• Adopt and install streamlined processes across all NDIA partner organisations so that everyone has the same/similar experience.
• Streamline and simplify processes to reduce loss of information and the reduce the administrative burden on Participants and Planners.
• Increase and improve Participant access to Planers and LACs, thus empowering the Participant and reducing fear and confusion.
• Create a model underpinned by a transparency approach, not unlike other insurance models such as Transport Accident Commission (TAC) in Victoria.
• Set up timely and efficient response times. No longer than a 30-day process for any approval and if a delay occurs, the Participant must be formally notified.

Issue 2: Educating, empowering and upskilling Participants

• Provide funding streams to specific disability support organisations so that all NDIS stakeholders (Participants and organisations) are educated as to specific disability cohort needs.

• Provide support and resources to Planners and LACs to ensure long-term education and knowledge acquisition, therefore increasing positive quality of life outcomes for people with disabilities.

Issue 3: Funding in Plans do not reflect Participant needs

• Upskill Planners and LACs to ensure a greater understanding of the basic needs for people living with limb loss and the correct support areas to allocate funding.

• Provide general education for Participants regarding the steps and processes required to access a Plan which will enable them to live an ordinary life and achieve their goals.

Issue 4: Facilitating emergencies and managing delays

• Set aside an allocation of ‘fit for purpose’ funding to be used for immediate emergencies, without the lengthy approval process.

• Ensure that emergency funding is readily available for Participants to access during and immediately after the transition phase and without the general funding approval requirements.

Issue 5: Access to Prosthetic Service Providers

• Ensure that Participant Plans are approved in a timely manner to reduce the risk of a reduction in the Prosthetist workforce in Australia, thus leading to less choice and control for Participants.

Introduction

Limbs 4 Life is the peak body for people living with limb loss in Australia and was founded as an incorporated charity in 2004i. Limbs 4 Life and its peer support volunteer workforce has assisted hundreds of Australians living with limb loss to transition into the National Disability Insurance Scheme.

Limbs 4 Life welcomes the opportunity to provide this submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) provision of Assistive Technologies along with recommendations to the Scheme to support better long-term socio-economic outcomes for people with disabilities.

This paper draws upon Limbs 4 Life’s experience as an unfunded organisation providing direct assistance to people living with limb loss already in, or preparing to enter into, the NDIS. It is important to note that Limbs 4 Life is not a service provider for people transitioning for the NDIS. Instead any support we do provide is offered because of our commitment to people living with limb loss, a genuine desire to see people achieve their goals and aspirations through NDIS support, and a belief that with further adaptation the NDIS will make a significant difference to the social fabric of Australia.

Our submission to this Inquiry outlines the concerns of Limbs 4 Life, the cohort of people with disability we represent, and provides recommendations for your consideration. Where possible we have also included unidentified feedback from Participants from various locations across Australia.

Our Population

Prior to the introduction of the NDIS for many people living with limb loss there was no option of ‘choice and control’ in regards to Assistive Technology (AT), but instead determined by state and territory funding models, some of which had not increased for twenty years. While AT research and development continued to advance, access to AT was dictated by prehistoric funding models which significantly (and often negatively) impacted functional and mobility outcomes for people with limb loss in the community.

The ability to be independent, ambulate safely in the community and/or participate among peers grew increasingly difficult whilst other areas of technology, such as smart phones and computers, continued to advance and be easily accessible by the public. However, due to funding restrictions, people living with limb loss had limited access to basic items such as a prosthetic ‘shower/wet leg’ (so that people could safely stand up in the shower and wash), know that they could stay in any accessible accommodation and feel socially and/or economically included when traveling. In addition, access to knee units which promote safety and prevent falls, were far out of reach of the general amputee population. Likewise access to any upper limb device which enables people to type (a basic requirement in today’s world) were financially inaccessible until the introduction of the NDIS. The provision of individualised AT, through the NDIS, has changed the lives of people living with limb loss; which in turn is reducing downstream government health, social welfare, and economic costs.

For some people, the NDIS has had a very positive impact on their functionality, mobility,

independence, economic and emotional outcomes, while for others the entire experience has been

daunting, emotional, frustrating and exhausting with minimal resolve. For many, the process has

been a crash course in education, the ability to self-advocate, an urgent need to understand their

disability requirements, while simultaneously trying to understand and interpret new NDIS-related

processes.

One glaringly obvious issue that Limbs 4 Life has identified is simply the fact that not all people are

equipped to advocate for themselves and understand their own needs in the lead up to, and at the

time of, a Planning Meeting. It needs to be stated that many people living with limb loss, who have

experienced previously noted outdated state funding models, have been dictated to all of their lives

regarding what AT they can and cannot have. Consequently, many have taken little or no interest in

new and available AT options which would greatly improve their lives simply due to the fact that

they were never available or suggested to them in first the place. With the rollout of the NDIS

individuals are required to have a complete and thorough understanding of the NDIS process and

structures or risk having their AT needs not met.

At Limbs 4 Life we want to ensure that all people living with limb loss/deficiency are empowered to

make informed decisions about their disability and their lives. However, it can be difficult and time

consuming to educate a population about choice and control over their ‘quality of life’ when they

have never had a choice in the past.

People with disability should be treated with dignity and respect; that being a basic tenet of the NDIS

and the Convention of the Rights of People with Disabilities. While we understand that the NDIS is

an insurance model and insurance models traditionally treat people as a number – people are in fact

important community members that require access to resources and technologies in order to

achieve quality of life outcomes and lead an ordinary life.

Transitioning into the NDIS for people with limb loss

Limbs 4 Life is an organisation supporting people living with limb loss across Australia. When

advocating for our stakeholders (Participants) what has become abundantly evident is the different

approaches by the NDIA Partners in each region. The NDIA Partners appear to have different in- house ways of operating, there is no uniformed approach, meaning how the processes work in one

Region is completely different from how the processes work in another.

For a national Scheme to work correctly there needs to be universal uniformity and harmony. There needs to be consistent streamlined processes in place, response times to Planning Meetings and Reviews should meet common timeframes and deadlines, approvals of Participant Plans should be timely and the practices of all NDIA Partners and their staff should be consistently applied throughout the country.

The transition process for some participants has been seamless and timely, while for others the process has been lengthy and onerous.

As the national peak body for people with limb loss/deficiency we are only too aware that for many participants there have been delays in the application process, and we do acknowledge that the NDIS is still adapting and experiencing change as it embeds itself into community and policy. However, we have been inundated with stories whereby people with limb loss have been advised that they are ineligible for NDIS support and have been forced to undergo lengthy review processes, but then seen them to be approved on the Scheme. This has led to psychological distress, fear and distrust.

We are concerned that due to a lack of education and training for Planners and Local Area Coordinators (LACs), as well as staff attrition, this has also caused distress for some Participants who have experienced key items being missed on their Plan. This has been particularly the case where a Participant lacks confidence or capacity to self-advocate and/or is unsure of what AT (or other items/services) would assist them to achieve their goals and aspirations.

Following consumer feedback, Limbs 4 Life has identified the following delays:

• Submission of paperwork of Access Request Forms have been lost and need to be re-submitted and/or NDIA partner organisations having no record of completed application forms and/or AT quotes

• Wait times for Planning Meetings, sometimes up to 4 months

• Timeliness in relation to approvals/ approval processes and/or general administration burdens whereby planners have failed to submit information.

As an example there have been a significant number of upper limb amputees in Queensland who have been deemed ineligible for NDIS support even though they have previously received funding for AT devices by the Queensland Artificial Limb Service. Planners and LACs need to be educated about the eligibility criteria to reduce the burden of planning appeals and reviews, as well as reduce distress for potential Participants.

Other concerns relating to planning process

Other concerns relating to planning process have been identified as follows:

• Incorrect communication. Planners who advise their client that the meeting was not a ‘Planning Meeting’ and that the meeting would be an ‘Information Gathering Session’, only for the Participant to find out that the meeting was in fact a Planning Meeting and receive a Plan based on a broad discussion. This has lead to distress and a lack of trust in the system.

• Lack of contact and access to Planners. Many Participants report frustration that they are unable to follow up with their Planner to determine the outcomes of their Plan. Planners do not (or very rarely) provide a direct contact number or email address. One of the biggest complaints by Participants is the fact that they can leave messages for weeks on end, without a timely reply and never knowing if their messages have even been passed on. This is a significant problem leaving Participants with a general number of the partner agency to call, only to be frustrated by leaving many calls over many months but with no timely reply.

• Insufficient time-lines. Plan approval delays mean that when the AT has finally been approved the window of opportunity to provide outcome measures on AT (prosthetic devices/wheelchairs) has been too short to meet Plan deadlines and therefore funding under that support category has been lost.

“As a 16 year old who lives near the beach on a coastal town of NSW, I applied for a shower/wet leg in my Plan. The goal of having a shower/wet leg was so that I could participate in beach and water activities with my friends to keep me fit and socially active. My request for the shower/wet leg was rejected but I don’t know why. Neither myself or my parents received any explanation”.

– person with lower limb loss)

“It has been 2.5 years since I had my original Plan approved and I trialled new upper limb AT. All of my outcome measures were submitted to the NDIA. I had commenced employment re-training and turned a corner. For the first time in my life I actually felt normal and was hopeful about my future.

Right now, I wish I had never found out about this incredible technology. The waiting time for approval of what could have been has driven me crazy. My plan expired prior to me being able to access the AT. I have since contemplated suicide and I now require emergency psychological treatment due to my increased levels of depression. Why does it take so long to make a decision and why can no one respond to my inquiries?“

• person with lower limb loss)

Delay in the transition process and subsequent AT approval process has led to:

• Safety concerns for participants.

Increased risk of falls, due to an inadequate prosthetic socket fit.

• Poor responsive timelines.

Adult Participants outgrowing their sockets which are then too big and lead to the device being unsafe to use or resulting in injury. Similarly the issue is not being addressed urgently enough for growing children and teens that require very regular socket updates to accommodate their growing bodies.

• The inability for Participants to carry out their duties and/or attend and function at their place of employment because of use of unsafe prostheses.

• General lack of communication and information. Participants are expressing feelings of bewilderment. There is minimal contact or response to enquiries, with Participants left up in the air and without access to information about their Plan which directly impacts their care.

• The NDIS was designed as a Participant–led Scheme promoting choice and control. However, Providers are being notified of successful Plan outcomes; while the Participant is unaware. The Provider is therefore required to notify the Participant of the outcome, rather than Planners or LACs.

“Bill is currently wearing 6 x stump socks to hold on his leg. This is now a safety issue. His work-leg requires urgent repairs so that he can continue to contribute to the economy and participate in community. Bill had his plan approved in November 2017, however there was no funding allocated for Assistive Technology. Bill still has no funding allocated to AT, and he is at risk of losing his job”

– person with lower limb loss)

is a bilateral below knee amputee, who also has upper limb amputation with partial fingers missing (he only has a thumb and one finger) on his sound side. John requires an upper limb prosthesis to live and function independently. He is in urgent need of the provision of an upper limb prosthesis for the reasons of hygiene, toileting, eating and basic functions.

While funding was approved by the NDIS for other items (e.g. his two lower limb prostheses) no funding has been allocated for upper limb Assistive Technology. John’s Plan was approved in November 2017, yet there is still no outcome for this Participant.

Recommendations:

• Adopt and install streamlined processes across all NDIA partner organisations so that everyone has the same/similar experience.

• Streamline and simplify processes to reduce loss of information and the reduce the administrative burden on Participants and Planners.

• Increase and improve Participant access to Planers and LACs, thus empowering the Participant and reducing fear and confusion. Currently, Participants are not provided with Planner or LAC’s email addresses or contact numbers. They are given a generic contact number and a generic e-mail address with little or infrequent response, leading to untimely delays and confusion about how and when their will achieve their future goals and aspirations in relation to employment and social and community participation.

• Create a model underpinned by a transparency approach, not unlike other insurance models such as Transport Accident Commission (TAC) in Victoria. When a Plan has been approved adopt a similar approach to that used by the TAC, itself being an insurance scheme. In this instance, when a quote is approved for a TAC client the client receives a confirmation letter outlining the total cost of the device and action that the client needs to take in order to process the approval. The TAC scheme has been operational for 32 years and could offer the NDIS with a ‘lessons learned’ adaptation approach to policy and procedure review.

• Set up timely and efficient response times. No longer than a 30-day process for any approval and if a delay occurs, the Participant must be formally notified.

• Upskill Planners and LACs to encourage Participants to keep copies of all information in order to prevent the need to re-submit forms that are lost or misplaced.

“People with disability must be treated with dignity and respect. They also need to be informed about their treatment and care. There is nothing less empowering than not providing information to a person with a disability in a timely and effective manner”

United Nation’s Convention on the Rights of Persons with Disabilities ii

5. Educating, empowering and upskilling Participants

In the past the state and territory based artificial limb funding schemes have been limited by antiquated funding streams. Much of this is evidenced in the original findings from the Productivity Commissions Inquiry into Disability Care and Support whereby it was acknowledged that under those arrangements ‘consumers basically got what they were given’. Funding (rather than the individual) sel-fdetermined outcomes, functionality and capacity of people living with limb loss.

That said, many people who require AT to participate in community, employment and society have little or no idea how to articulate their needs, and in some instances struggle to know what they

Need

AT is technical and not everyone understands what they need or how new technology will make a positive impact on their life. While the NDIS provides individualised based funding, the Scheme and/or Planning Meetings require consumers to have a direct insight and understanding about their level of disability and corresponding needs to achieve socio-economic goals and aspirations.

In the past, many of these consumers would never have bothered to continue to ask for what they need because funding would never allow for it. This in turn negatively impacted on individuals living with limb loss and also had downstream government cost effects, as consumers with inadequate AT would experience more accidents or injuries, placing a burden on the healthcare system and affecting a person’s labour force participation capacity.

For example, limitations on stumps socks in some states and territories allowed of only four per year and led to hospital readmissions and serious skin breakdowns. Fast forward to the era of the NDIS (2014 and onward) with an expectation on consumers to have accelerated learnings almost overnight about their needs and what they can access. Despite Limbs 4 Life’s best efforts to disseminate AT-related knowledge amongst the amputee population very little is known about accessing prosthetic trials, gaining access to a physiotherapist for further gait training and/or support from Occupational Therapists for upper limb device training.

People living with limb loss are users of some of the most complex and technical AT devices required to live an ordinary life. This cohort sometimes uses advanced complex prosthetic and other AT devices; with engineering and technology advancing at a rapid pace in this particular space. In light of this the vast majority of consumers, regardless of whether they have lived with limb loss for decades or only months, are not aware of the AT available to them. They are often not aware because of an inability to understand the technological features and/or because their service provider has not imparted the knowledge adequately.

In light of all the aforementioned matters, unfortunately there are great fears and anxieties amongst this vulnerable cohort; a cohort who worry that AT they need for basic living will be left off their Plan, leading to plan reviews, or worse.

Limbs 4 Life has received numerous phone calls from educated, intelligent and positive people who, when entering the NDIS, are immediately thrown into a world they know nothing about. They need to be proactive, assertive and advocate on their own behalf to justify their needs and goals but without any tools (other than that provided by Limbs 4 Life) to do so. They have subsequently been thrown into a situation whereby they need to educate their Planners and LACs, who more often than

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not have a limited understanding of the unique needs of people living with limb loss, to ensure that

the Planners understand what needs to be included in their Plan.

There are minimal resources available for organisations such as Limbs 4 Life to support and upskill

their stakeholders. We are the only national peak body for people living with limb loss, operating

with 3.5 staff to service the whole of Australia. Limbs 4 Life have invested 2,808 unfunded hours

supporting people with limb loss to transition into the NDIS, advocated and raised concerns with

State and Federal Members of Parliament, supported NDIS Providers to support their clients, and

assisted Participants to identify and understand the goal setting process.

“Meeting my planner for the first time was a daunting experience. I was scared that I would forget to mention things I needed even though I’d made notes. I felt nauseous and anxious. The pressure of this meeting mounted for the entire day prior to the meeting and I hardly slept a wink”.

                                                           - person with lower limb loss)

“This whole process is too hard and too stressful. I can’t believe that something which should be so very simple is so time consuming and arduous. After 18 months, my needs have not been met. I am tired, and I am over it. Who is responsible for my duty of care, looking after me and other participants who are experiencing this mental anguish?”

                                  – person with lower limb loss)

“It was the Planner who made the error and allocated no funding into my plan for my wheelchair when I specifically highlighted that this was something that I needed. Now I am the one who needs to undergo this exhaustive review process when it wasn’t my fault. What’s the point in any of this? I thought it would lead to better outcomes.”

                                   – person with lower limb loss)

Limb loss is not biased, it affects people of all ages, genders, cultures and socio-economic

backgrounds. Many people, regardless of their social status, have experienced mental health

concerns due to the delays in NDIS planning wait times. This burdens the individual, families, care- givers and their employers. It can affect everyone, making the burden of disease greater at a social and economic level. Limbs 4 Life, which has advocated for the NDIS and made submissions since its initial planning, truly believes that the Scheme has the opportunity to significantly improve the lives of people living with all types of disability.

13 Limbs 4 Life Inc. | Submission to the Joint Standing Committee on the Provision of Assistive Technology NDIS

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However, as a peak body advocating for and supporting people living with limb loss nationally, Limbs

4 Life encounters the positive and negative impacts of the NDIS on a daily basis. It is our goal that we can assist the NDIA to create change that will not only improve the lives of Participants but also that of all those who are operating within the Scheme to ‘make it work’. As a small organisation which receives no government funding for the work we do are now spending considerable time, effort and resources to support people in, or preparing to enter into, the NDIS. We achieve this through direct support, advocacy and developing resources for people living with limb loss. This is not sustainable.

However, we feel that we must continue to provide this support to both parties to achieve the best outcomes for individuals, Planners and ultimately the Scheme.

Limbs 4 Life would also welcome the opportunity to develop resources to assist Planners and LACs understand the unique needs of people living with limb loss, in an effort to advance their knowledge and assist in knowledge translation. However, for a small and unfunded organisation, we would need financial support to do so.

Recommendations:

• Provide funding streams to specific disability support organisations so that all NDS stakeholders (Participants and organisations) are educated as to specific disability cohort needs.
• Provide support and resources to Planners and LACs to ensure long-term education and knowledge acquisition, therefore increasing positive quality of life outcomes for people with disabilities.

6. Funding in Plans do not reflect Participant needs

Funding supports are continually being allocated to the wrong ‘support’ budget area.

John from Victoria reports that “30K worth of AT funding was allocated to ‘Core Supports’ in my Plan and nothing in my ‘Capital Supports’ budget. I needed to have a plan review to have this changed. I was desperate for a new prosthesis as my foot was more than six years old and my socket required urgent replacement”. John only required $1500 for ‘Core Supports’, and not the $30K that was incorrectly allocated.

Mary from Sydney reports, “I just needed a new socket for my shower/wet leg and I ended up with $12K in my ‘Core Supports’ budget and a zero allocation of funds in my ‘Capital Supports’. I don’t need

Facilitating Emergencies and Managing Delays

During the course of the past four years Limbs 4 Life has been tracking the progress of participants who have transitioned into the NDIS. There have been serious concerns when an emergency arises while a Participant waits for approval of their Plan.

If a prosthetic socket does not fit correctly it can

be dangerous and lead to falls, making it an urgent safety issue requiring immediate attention.

Unfortunately there has been little, and in some cases no, provisions in place for emergency repairs and replacements during the transition period.

Children who grow quickly require regular socket replacements based on their height and length of residual limb more frequently than other members of the community. Presently there are minimal and/or no strategies in place to accommodate this need that is particularly unique to children and young people. This can lead to a long-term physical impact on their body, present body image concerns, contribute to mental health conditions and limit their ability to participate fully at school.

Children and growing teens should not be required to use a wheelchair or crutches while waiting for the approval of a socket replacement; again, something Limbs 4 Life consider to be an emergency situation.

Recommendations:

• Set aside an allocation of ‘fit for purpose’ funding to be used for immediate emergencies, without the lengthy approval process.
• Ensure that emergency funding is readily available for Participants to access during and immediately after the transition phase and without the general funding approval requirements.

8. Access to Prosthetic Service Providers

Impact on Plan delays and approvals further impacts the Australian prosthetic workforce, and thus timely and effective provision of AT in Australia.

Australia’s national prosthetic practitioner rate is well below international rates, and the dispersion of practitioners is of significant concern. The most recent workforce data from the Australian Orthotic and Prosthetist Association reveals that:

• 5 states and territories have rates below the national average
• no state or territory currently meets recommended rates for optimal service provision
• some states have seen a regression in rates due to population growth and practitioner number stability.v

The launch of the NDIS has seen a significant increase in the establishment of private prosthetic practitioner facilities across Australia, something which provides greater choice and control for the Participant. Having more providers situated in more locations across Australia than ever before

Means that less delays and more timely outcomes for Participants, and ultimately the NDIA.

However, due to delays in Plan approvals some Providers are struggling to financially sustain their businesses. Limbs 4 Life is aware that a number of Providers may need to close their businesses in the coming financial year because of this issue. Consequently, there is a significant risk that we will have less qualified prosthetists in Australia than there was before. This is concerning and in the long-term will negatively impact on Participant outcomes and reduce genuine choice and control due to a lack of various independent Providers.

Private providers are among the only services available to people living with limb loss outside of ‘regular’ 9am – 5pm Monday to Friday business hours. In some states and territories, the provision of access to service and repairs is not available after hours or on weekends. For people living with limb loss and in full-time employment accessing appointments during regular business hours can be particularly difficult. There is a need to ensure that these private providers remain in the workforce in order to attend to minor and major repairs outside of regular hours, thus ensuring that people with limb loss can fully participate in employment and the community.

Recommendation:

• Ensure that Participant Plans are approved in a timely manner to reduce the risk of a reduction in the Prosthetist workforce in Australia, thus leading to less choice and control for Participants.