NDIA Accountability Project

Assistive Technology for Amputees in NSW

‹ PrevPage 1 of 7 · Source p. 1Next ›

Submission

Joint Standing Committee on the National Disability Insurance Scheme

The Amputee Association of NSW Incorporated

14th September 2018

Introduction

The Amputee Association of NSW Inc. would like to thank the Joint Standing Committee on the National Disability Insurance Scheme into Assistive Technology for the opportunity to make a submission.

The Amputee Association of NSW Inc. (Amputees NSW) is a Not for Profit, 100% volunteer organisation established in NSW. The Association is made up of amputees, their families, health professionals and associated community in NSW and has been supporting and advocating for amputees in NSW since 1985.

The Amputees NSW works collaboratively to assist and support outcomes for its community with NSW Government departments and agencies, health professionals, health facilities, service providers, equipment manufacturers and private entities to provide knowledge and understanding of the medical conditions implication.

The Association is focused on helping amputees regardless of their stage of transition to amputation, to engage in community, find support services and cope with the unique challenges of life after amputation.

The Amputees NSW is the subject matter expert organisation in NSW for life with amputation and limb loss.

Summary

This submission is built on the experience and complaints of our amputee community and membership within NSW. Complaints and requests for intervention into prosthetic requests have increased significantly in NSW since the roll out of the NDIS such that it is the highest issue communicated to Amputees NSW.

Most common issues raised:

  • Unacceptable decision timeframes
  • Poor and inconsistent guidance on applications, evidence and quotation
  • Significant lack of experience and knowledge of amputation space
  • Inconsistent decision outcomes
  • Poor and inconsistent communications with participants and prosthetics providers

Consultation in the NSW amputee community, with partner limb different organisations and prosthetic provider space has helped identified a significant gap in the knowledge and capacity of the NDIS Assistive Technology (AT) processes and planning teams. The gap in knowledge can be identified as a significant contributor or source to many of the issues raised above. This deficit in performance is then compounded by communications behaviours.

A distinct lack of communication and consultation with the Association and other amputee communities in each state in the early stages of the NDIS development has meant these Assistive Technology processes seem to lack the important supports and critical service level elements

Addressing Terms of Reference

The role of NDIA in approving Assistive Technology requests

Decision Timeframes

Amputees who can operate effectively as contributing members of the community both in terms of society engagement and employment have dependency on timely approval for prosthetics.

Before the NDIS, amputees were supported by NSW Health, EnableNSW. EnableNSW decision and approval times had been identified and optimised because of the implications of physical and mental health to service level of on average 14 days or less.

Under the NDIS participants have regularly recorded delays in individual process cycles for application, processing and plan approvals of between 3 months and 20 months.

While it is known that in-kind engagement with EnableNSW is taking place there are clearly performance issues with planner to approver workflow and around communication / reference to EnableNSW or within NDIA technical decision teams.

Inconsistent Guidance

Often performance issues with service guidance (such as from LAC’s and Planning team) is a symptom that can readily be attributed in a system of poor or inconsistent knowledge. And/or to unclear, inaccurate and incomplete documentation. And/or to difficult or laborious access of knowledge systems and resources.

The lack of focused engagement and consultation of state amputee SME organisations during the build would appear to be a contributing factor. Clinical teams do not live the amputation experience and as thus have an incomplete understanding, despite being well intentioned.

Knowledge Gap

As attributed to the issues of guidance and timeframes above, access and use of SME knowledge and resource development could have and can be resolved readily even in the existing workflow.

Note: Amputees NSW is currently renewing focused material and provides in-service presentations for amputees, allied health and specialist teams in aspects and matters relating to life as an amputee, including understanding the prosthetic lifecycle and selection.

Decision Outcomes

Since the initial roll out through NSW we have regular reports of inconsistent decisions. These have appeared in the NDIS application cycle and in the planning development/review cycles. Amputees with near identical conditions and circumstances getting polar opposite decisions.

This we would again attribute to the lack of experience/knowledge, insufficient training and SME resource access/utilisation.

We have seen numerous transtibial amputees (below knee) initially rejected on application in NSW because they have an existing prosthetics while transitioning to the NDIS. They have a “normal-ish” activity lifestyle. That of course is because they have a purposed prosthetic at the time of application. Remove that funded prosthetic and the individual would have the same capacity and needs as a Transfemoral (above knee) amputee without a prosthetic. High needs support, significant other AT needs, extensive home modifications, vehicle modifications, unable to work, increased fatigue, extend health complications etc.

Communications

A readily identifiable contributor to anxiety and process delay is a lack of feedback or communications. Because of the dependency on the provisioning from the NDIS and the shift from state health supplied AT, there is a regular report pattern to Amputees NSW of anxiety and distress with the lack of information from the planning teams and process.

Critical points of communications needed in a service engagement space are consistently absent. This is not limited to the participant and NDIS information stream alone, but we have had regular numerous negative comments from prosthetic providers and service providers in NSW as well.

It is not uncommon for a participant and prosthetic provider to be waiting on an approval while the planner has not communicated a need for additional information before the approval process can continue.

Recommendations

The following base recommendations have been compiled considering achievable short term and long term improvements:

  • Review and optimise workflows providing new process end to end delivery SLA’s,

  • Re-establish best practice communications processes at defined points of time and workflow states,

  • Re-establish critical alert conditions and responses when workflow breaches defined SLA’s,

  • Establish respective state amputee organisations as Subject Matter Expert (SME) resources for LAC’s, Planning Teams and Technical Advisory Teams,

  • Establish agile internal audit teams with effective supports and authority to consult and implement workflow change,

  • Establish with the consultative support of respective state amputee organisations revised training and resources materials for participants, LAC’s, Planning teams and Approval teams.

Background and Condition Content

Limb Difference Organisations

In Australia, where organised, the amputee representative entities are state based only and no recognised national body. The Amputee Association of NSW has strong working relationships with other state and like demographic NFP charity organisations such as Amputees and Families Support Group QLD and Aussie Hands.

Presently the establishment of a representative community limb difference committee is being considered in proposal with each representative state entity to more effectively support and consult with the NDIA and federal health on relating issues.

Understanding Amputation

Amputation was the clinical mechanism of last resort used to save a life from dramatic trauma, unstoppable disease or infection, or in some cases provide relief from the complexity of another health condition which diminished the quality of life for an individual.

Amputation and the subsequent impact on mental and physical health of an individual and their families is commonly misunderstood by the Australian community. Even some health professionals regularly underestimate the implications on function, quality of life and dependency on supports such as Assistive Technology.

Amputation and Assistive Technology (Prosthetics) Dependence

Amputees and those with limb loss or limb difference have a unique circumstance and set of devices in the assistive technology classification.

Amputees are intrinsically dependent on Assistive Technology in the form of prosthetic limbs. Especially so those who are mobility impacted such as lower limb or leg amputees.

An amputee who can be fitted with a prosthetic has an opportunity to reach a maximum restored capacity of “normal” life including full time employment, family, sport and community contribution.

Without the access to a fitting and functional prosthetic, the amputee has significant reduction in function and capacity, has high dependency on family and support services, suffers from degrading mental and physical health and has a much higher likelihood of hospitalisation events and subsequent increased Health budget spending. This is especially prevalent in lower limb or leg amputees due the impacts of mobility loss.

Implicit understanding of Prosthetics Limb Prosthetics are a unique classification within the Assistive Technology scope. There are dramatic implicit variables around prosthetics which are not obvious to the community and professions without significant exposure to amputee life experience.

Manufacture and delivery of this class of assistive technology is very different to other items like wheelchairs and walking frames.

  • Each Limb must be custom made to match the residual limb characteristics of the amputee and the conditions for which it will be used. The process is manual and requires unique skills.

  • A prosthetic limb sockets can take multiple attempts to be correctly fitting.

  • Once a prosthetic socket no longer fits sufficiently to a residual limb it not only loses tolerable comfort but can become unwearable in a matter of days and subsequent attempts to use the prosthetic result in damage to the residual limb. This results immediate and dramatic drop in mobility.

For example, unable to move safely around their own home especially bathroom & kitchen, able to attend work, care for children, leave the house for basic life activities like shopping.

  • A prosthetic limb, especially in the first 2 years post amputation can change sufficiently to render a fitting socket, unfitting in less than 3 months.

  • A minor failure of a component for a prosthetic commonly renders it inoperable and in the case of lower limb amputees unsafe for attempt to use.

  • A prosthetic requires repairs from a professional technician/clinician.

  • There are limited prosthetic service providers in any state and waiting periods for appointment are common.

  • An amputee will try to make do with a limb inherently even to the point of harm as a result because of the dramatic loss of mobility and its implications on basic life activities.

  • Loss of mobility results commonly in increased depression and can compound long term chronic health conditions especially in adult amputees.