Submission By

1

Yooralla

Yooralla has a proud history of working within the community to build a world where

gople with disability are equal citizens. Established in 1918 by Ms Evangeline Ireland

(Sister Faith), Yooralla today provides a diverse range of support services to over 3,000

gople each year and employs nearly 2,000 staff working in gople’s homes, in the

community and across 100 sites in Victoria; ranging from early childhood services to

supporting young gople and adults to engage in social, economic and educational

pursuits.

Yooralla’s services range from a kindergarten inclusion program, residential and short nterm accommodation support, in-home supports, allied health and nursing, peer support and self-advocacy development, recreation, education and employment services.

Yooralla has supported Victorians with disabilities to access Assistive Technology (AT) for over 40 years, providing information, capacity building, sector education and specialist allied health supports. These include services that provide specialist advice, loan, trial, maintenance, repair and reissue services.

The Electronic Communication Devices Scheme is a Victorian state government funded service that subsidises speech generating communication devices and software for people who have no speech or speech that is difficult to understand.

The Independent Living Centre Victoria provide independent, commercially unbiased, actionable information and advice to individuals, their family members, and to the sector including government and policy-makers, and raises awareness of the role that AT plays in enabling whole life participation in the broader community.

ComTEC therapists provide specialist information, advice and training on assistive and communication technologies such as speech generating devices, switch access, software to support literacy, computer access and environmental controls. It also has an electronic equipment library providing short-term loans/trials of communication and access equipment.

The Equipment Library provides short-term loans/trials of specialized equipment for children, young gople and adults with disabilities.

Table of Contents

1 Executive Summary …………………………………………………………………………….. …..2

2 Principles guiding this submission by Yooralla ……………………………………………. .4

3 Assistive Technology ……………………………………………………………………………… ..6

3.1   The transition to the NDIS and how this has impacted on speed of

	equipment provision ............................................................................. 6

3.2   Whether the estimated demand for equipment to be sourced through

	the assistive technology process in each roll out area was accurate ... 9

3.3   Whether market based issues impact the accessibility, timeliness,

	diversity and availability of assistive technology ................................. 10

3.4   The role of the NDIA in approving equipment requests ....................... 12

3.5   The role of current state and territory programs in the assistive

	echnology process .............................................................................. 13

3.6   Whether the regulatory frameworks governing assistive technology are

	fit-for-purpose ..................................................................................... 15

3.7   Any other related matters…………………...…………….………………16

4 Conclusion ……………………………………………………………………………………………. 17

5 References……………………………………………………………………………..18

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Executive Summary

Yooralla has proactively sought the views of allied health staff including

• specialist staff and senior clinical team members. The organisation has

• also reviewed the feedback of participants in relation to the transition of

• National Disability Insurance Scheme (NDIS) as it relates to Assistive

• Technology (AT).

Yooralla fully supports the aim of the NDIS to ensure that people with

disabilities have access to the support they need in relation to social,

economic and educational participation. It recognises that globally, the

NDIS is one of the few national policy frameworks that address the

sustainable provision of AT as a key method to achieve this aim.

A human rights starting point is essential in underpinning discussions

regarding AT. Australia is signatory to the CRPD and the Optional Protocol, hence this should be enlivened within an NDIS and AT context. From this stance, people with disabilities in need in Australia should have access to AT to ensure a dignity of life that is characterised by health, wellbeing and productivity1

To achieve the delivery of an AT framework that is human rights focussed,

current implementation would benefit from a considered approach to consolidating and investing in key areas in order to provide a nationally consistent and sustainable approach. Existing bodies and organisations have significant experience and expertise in this areas and stand as willing partners in supporting this consolidation and investment. Opportunities for local partnerships, innovation and building upon the significant expertise of the sector to drive elements associated with information and capacity building, consistency within the scheme and sustainable supply chain management exist and would be welcomed by the sector.

Yooralla Submission

Principles guiding this submission by Yooralla

Respecting, protecting and fulfilling the rights of people with disabilities consistent with the CRPD and NDIS Act;

particularly in the principles of equality, inclusion, choice, power and control; and participation. These values are consistent with the CRPD and contemporary models of service delivery and should be applied regardless of the settings in which people with disabilities live and interact with other people

Promoting dignity of risk and informed consent, balanced with a provider’s duty of care and obligations to other relevant legislative and contractual requirements.

Building empowerment and capability of the person, the sector and the community via sustainable and quality assured supply chain management.

Promoting individualized and tailored supports, balanced with rights protection of the person.

Promoting individualized supports based on research evidence and contemporary practice.

Balancing regulatory mechanisms versus efficiency and effectiveness of service provision to promote a person’s independence, participation and decision-making.

Achieving national consistency, balanced with state or organizational unique value contributions.

3 Assistive Technology

3.1 The transition to the NDIS and how this has impacted on speed of equipment provision

The transition to NDIS has had a variable impact on the speed of equipment provision. The tiering of equipment based on complexity and ability to self manage has had noted positive outcomes for participants who have the capacity and confidence to make these choices in an informed way. The improvements to meet funding gaps had also reduced stress and wait times for those who can manage their funds and purchase as required. Key areas from consultation with prescribers, participants and AT specialists within the organisation have identified that where more complex AT solutions are required, the process could benefit from further development to reduce current impact on speed of equipment provision. These areas included:

• skilled and experienced staff capturing functional impacts in a consistent way at planning meetings to inform an evidence informed benchmark allocation of allied health hours
• further practice support to practitioners to demonstrate and articulate against the decision making criteria for AT to reduce administrative burden and confusion
• the mismatch between plans and wait times necessitating reviews where allied health hours or budgets for AT need to be rejustified
• information and support for participants accessing lower complexity items to build their capacity and decision making in their AT choices from specialist staff with adequate expertise
• Communication and consistency were highlighted across these areas with concerns from all parties about the miscommunication between all levels of the scheme and it’s partners causing confusion and angst for participants and those supporting them.

Whilst access to an AT assessor in future potential iterations of the scheme aims

to reduce issues at planning, interim capturing of participants functional needs

more adequately at a planning process to give access to tiered levels of allied

health hours would provide more seamless services to the participant. There is

great variability currently between the participants needs and participants funded

hours response in terms of reasonable and necessary. A way to achieve this may

be to review the operating guidelines for AT approval to include adequate

acknowledgement and standard funding for the below based on estimation of

functional impairment.

o appropriate level of allied health hours allocated based on benchmarks

o rental

o trial

o training for user and AT partners

o maintenance and repair

3.1.2 Prescribing

Enhanced practice guidance on using the language of the NDIS Act and the style

of reports required by the Agency to make decisions would be welcomed by the

sector. Practice examples provided included lack of clarity on home modifications, with complex systems and poor usage of allied health hours in follow up. Clearer transparency on the review process where applications are rejected but no articulation on the rationale for rejection would further be welcomed in order to create a reiterative system of change and learning.

3.1.3 Prioritisation and Approval

See section 3.4

3.1.4 Procuring/ Providing

The ability to put the service agreement line item on hold, or have items such as maintenance and repair not subject to plan expirty in order to continue to support the participant as required within a lengthy delay process, would prevent the additional burden of plans expiring whilst awaiting decision necessitating the same need to be justified/ reviewed and new service agreements generated.

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It was noted that on some occassions, an off the shelf product from a supplier who is not a specialised disability supplier will meet the persons needs most economically. However unless the person is self- managing they can’t order the item unless the supplier is registered with NDSI. This can result in the item that best suits the persons needs requiring funding to be sourced from outside the NDIS system. Increased flexiblity in this space would result in overall reductions in administration and wait times for equipment.

3.1.5 Information, Linkages and Capacity Building

Key systemic factors that support sustainability in terms of access to information and capacity building opportunitiies and expertise, equipment loans, trials, maintenance, reissue and repair need to be addressed in order to both provide a more timely solution to participant AT requirements but also to reduce the impact of AT abandonment. State funded services at a state and national level provides thousands of people with disabilities information, advice and capacity building supports including access to loan/trial equipment that has a proven benefit in preventing failed AT solutions and further deterioration/ injury.

3.1.6 Communication

Yooralla participant feedback consistently highlights the importance of participants being able to tell someone if they were not happy with a service. Face-to-face contact was seen to be an important feature of being heard and empowered.

A single point of contact (SPOC) for each participant so that they have a clear line to raise and follow up on concerns would be of benefit. This SPOC may be nominated within the plan and shared with participant consent with those supporting them in their AT needs, should further clarification or support be required. This could include a “status” of AT on the portal so that people could easily check where the decision was in terms of the approval process, i.e. with delegate, referred to technical advisory team, awaiting prescriber information etc.

Portal/web access could include templates for reports, examples of sound applications for AT, training videos, sessions, advice on decisions by the NDIS and serve as a “one stop shop” point of truth for participants and practitioners. This could include a running log of AT FAQs regarding key topics or decisions. Sector bodies or partners would be willing contributors to a cross disciplinary working

group to assist the agency at a national level in the development of these

resources.

Written confirmation of rejections provided in an accessible way to participants so they can understand why AT request has been rejected. This could include the rationale for the decision and the person who has made that decision so that due transparency, risk management and accountability in place if clinical rationale is over ruled. There should be a responsibility on the planner or person who is making the decision to reject the application to offer an alternate means to get their needs met if AT is rejected, i.e. a referral/ support pathway.

3.2 Whether the estimated demand for equipment to be sourced through the assistive technology process in each roll out area was accurate

With the current delays impacting on planning, prescription and prioritisation/approval, it is difficult to speak to market demand in procurement.

Whilst the ECDS has seen an increase in applications and wait times (6-9 months) and some evidence of a decrease in applications for eye gaze devices and communication specific devices, however the data does not currently support an overall trend.

3.2.1 Practice Guidelines

Some clear guidelines for participants and practitioners would be of use, to fully understand what can and cannot be funded as the experience as a state wide organisation is that there is variability in decision making leading to confusion for practitioners and participants. This will support suppliers and the broader market to respond to the demand being created.

A practice example of an iPad as a speech generating communication device was provided. Some planners had rejected funding identifying them to be an “everyday household item” however some planners had proceeded to fund them. This inconsistency was difficult to understand and manage from a practitioner and participant perspective.

3.2.2 Assistive Technology Solution

For consideration is rather than attaching a dollar to a participants package, which 9

3.2.3 Seed Partnerships

The concepts of Universal Design have broadened and there is growing technological convergence to enhance opportunities for optimal functioning through mainstream application of accessibility solutions2. Traditional disciplines such as rehabilitation engineering, occupational therapy and education are now broaching partnerships with industrial designers, robotics and the broader field of STEM to create reiterative feedback loops that expand on how we create sustainable technological solutions to accessibility3. Targetting funding of these new partnerships would assist in fostering rates of sustainable product design and scalability through increased competition and consumer discernment 4 . Seed funding of startups or in kind partnerships with committed partners in STEM to contribute to the development of locally manufactured AT products or enhancements to current production will assist in driving down costs, increasing sustainability and stimulating local economy 5

Whether market based issues impact the accessibility, timeliness, diversity and availability of assistive technology

The underlying assumptions of a ‘market economy’ are that there is a wide range of choice offered for services in every regional area, a constant supply of professionals and direct support workers in the workforce with experience and knowledge, and that the population of people with disabilities are homogenous.

As the market place shifts, examples were given of participants living in areas that

were outside of travel parameters allowed for in pricing, or in identified thin markets

this meant that participants were not able to access services in their areas even

when not classified as rural or regional.

The recruitment of specialist staff to meet the growing needs of increased access

to AT is an ongoing challenge and can impact providers in terms of timeliness of

service delivery and wait times for engagement. Staff retention is becoming an increasing issue as staff move into other sectors due to uncertainty, change and the frustrations associated with long delays, lack of communication and rejected applications in the absence of clear rationale.

Careful consideration needs to be given to financial, physical and sensory access factors when considering technology. Equivalent emphasis should be given to developing staff expertise and support capability to ensure people with cognitive and communication disability have access to technology that builds their independence in communication, learning and entertainment.The absence of corresponding line items for training of participants and those in their life regarding AT solution and for adequate monitoring and review was noted by practitioners who were concerned about the successful implementation of AT.

3.3.2 Diversity and availability

A concern was raised regarding potential conflict of interest management for participants who were unable to access unbiased independent opinion in order to ensure financial and legal transparency regarding choice and control. Practitioners highlighted that all participants have the right to be able to understand the functional implications of the AT, by either paying to get an assessment or be able to speak with someone with expertise in this space, noting that for Level 1 and Level 2, there are still risks associated with these AT products that can have longer term implications including risks associated with interactions with other pieces of equipment.

3.4 The role of the NDIA in approving equipment requests

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Due to the speed of transition, the ability of the workforce to have access to

the complex skill set and specialization required to understand and approve AT

solutions has impacted on the provision of AT. There is a thin market for this

workforce and as demand increases, the ability of the workforce to supply the

right people in the right places doing things in the right way is being felt across

the sector. In previous funding environments, the difficulties in managing being

the funder, approver and quality control for AT has been managed in other

states by divesting responsibility for approval to suitably experienced and

qualified organizations subject to auditing and accountability from a financial

and clinical perspective.

Delegate Decisions

Delegate decisions have been associated with lengthy waiting times and

practitioners raised concerns that some decisions were made outside of the

scope of practice of the person making the decision. Within Victoria, SWEP

and ECDS have provided a clinical review component for practitioners

prescribing AT. This means that NDIS applications within Victoria have already

been reviewed from a clinical perspective including criteria of reasonable and

necessary. Practice examples were provided where practitioners experienced

rejections of these “vetted” applications but in the absence of communication

or follow up from planners and due feedback in order to inform learning and

practice/process improvement. A communication device for a person with

behaviour of concern and no formal means of communication was rejected

because the device was considered a safety risk despite articulation of risk

management and clinical rationale to support its use including the assessment

findings that unmet needs in communication making behaviour of concern

more likely to occur. The planner cited the NDIS Rule that states support will

not be funded if “it is likely to cause harm to the participant or pose a risk to

others“. Further investment in the technical advisory team, or the development

of a partnership with organizations that have skills and experience in this

space due to thin markets would alleviate these concerns and result in better

outcomes for participants.

Prioritization

It would be of great benefit to be able to have systems in place that can respond nimbly to key priorities in the areas of progressive conditions, children at key developmental stages, repairs and maintenance outside of current funding amounts/ not included in plans and those who have risks to their supports, i.e. aging parents requiring equipment to assist with their child’s care and support needs.

3.4.3 If not the NDIS, then who (now)?

It would be of additional benefit to include clear guidance on what conditions may not be funded and what the service map for those individuals looks like. This would assist participants in navigating the new service system as previous services transition/ are no longer available. There are some concerns being expressed that other agencies are meeting this need, a service connection mapping exercise facilitated by the NDIS for roll out areas would be a good partnership opportunity and learning exercise for the broader community and key stakeholders.

3.5 The role of current state and territory programs in the assistive technology process

3.5.1 A Partnership Approach with the Sector

The AT environment is one characterized by emergence and disruptive technologies. This characteristic makes it unwieldy and at odds with big government approaches. The success of the implementation of the framework requires the implementing agency to be aware of this and build its internal organizational capacity to respond to change through reiterative feedback loops via multivariate partnerships and collaborations. Its ability to self-organize and build functional resilience in response to this dynamism is key to creating a sustainable AT environment6.

There are multiple existing services across Australia that could be built upon or supported in order to add continued value, quality and safeguards to the NDIS at

6 Iňigo & Albareda, 2016

least until the full implementation of the ILC framework is embedded to protect

  particularly the vulnerable.  The current grant based funding approach is not a

  financially viable option for service providers in a turbulent market, the bulwark of

  expertise and continual updating of that knowledge as AT solutions continue to
 evolve and proliferate needs to be preserved in an accessible and meaningful way.

 There is opportuntiy in the thin market to leverage off existing systems adopting a
 tendering process informed by business modelling that allow integral elements of
 the framework, to be delivered by sector partners including:

   -  Recognition and continuation of funding of services that provide easy access
    and availability of specialists for consultation and advice.

   -  Recognition and continuation of funding for maintenance and repair systems

       that are adaptive to innovation and staffed by specialist personnel with

      appropriate knowledge and skills.

   -  Recognition and investment in unbiased information production to inform
    consumer choice for less complex AT and the ICT framework to maintain this

      information in a changing environment.

   -  A tender process is required to establish procurement, maintenance and

       repair arrangements for AT and this should be reflected in the planning
     process as a standard inclusion.

   -   to engage  in targeted collaborative partnerships with existing bodies to

     ensure that the sector capacity is built to provide unbiased information and

      support to people with disability to choose their AT independently where

      possible to select skilled and qualified specialists where additional input is
       required7.

   -  Engagement  with  universities  and  training  bodies  to  ensure  core
     competencies surrounding AT are embedded in curricula

   -  Development  of ICT  infrastructure  to  assist manufacturers  to develop
     unbiased information for consumer consumption

7 Sanders & Stappers, 2012

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3.6 Whether the regulatory frameworks governing assistive technology are fit-for-purpose

3.6.1 Accessible Access

Yooralla agrees that information and capacity building to increase the empowerment and autonomy of participants is fundamental in the AT selection process and subsequent reductions risk of abandonment. It is supportive of increased user empowerment and responsibility in the AT process and sees access to unbiased and updated information and advice from sector partners as a tried and tested means to achieving this aim.

People with cognitive disability and/or with physical access issues are able to build natural safeguards through “high quality, meaningful and credible information”. The assumption that objectives of information can be achieved by providing and/or training people on the navigation of information systems, while laudable, ought not to be the primary method of information access

Information provision through an ICT strategy is only one methodology. It is critical to reiterate that an information system must include face-face contact or training and on-going support within the context of developmental growth for the individual.

Information technology is a critical element for consumer engagement and participation, but not the key starting point. There are financial, physical, cognitive barriers to access, and there are significant needs in the training and supervision of support staff to enable people with cognitive impairment to access and use this technology.

Observed data by way of scrutiny of on-line forums such as those promoted by NDIA, including the ILC database appear to be used predominantly by people without a cognitive disability. This observed data is reinforced when the presence or representation of people with cognitive disability appears to be usually minimal to none at many disability forums. Therefore it is critical to be inclusive and mindful that training and development opportunities are offered to people with cognitive disability to share information, to facilitate social equity principles.

foster new technology are informed by evidence based practice and ethical and

legal guidance. One such area is the interaction between technology and the

individual where that technology may interface with the human neural network8.

Compliance with biomedical ethics, sustaincentric practice alignment and

awareness of inclusive design to include the broader system of supports are

critical to future successful cross sector partnerships9

3.6.2 Credentialling for Practitioners

Similar to the rules currently in place for bheaviour support and early childhood

intervention, it is essential that some form of credentialling is put in place to ensure

that those with the right skills and competencies are operating in the area of AT.

3.7 Any other related matters

The position of Yooralla as an organisation that supports the enlivenment of the

CRPD in the context of everday life in Australia, some reflections against the key

articles as they relate to AT are referenced.

3.7.1 Article 4 General Obligations

This article requires State parties to ensure and promote the full realisation of all

human rights and fundamental freedoms for all persons with disabilities, and the

implementation of measures to promote research and development of, and

promote the availability and use of new technologies, including information and

communication technologies and to ensure access to technologies at an

affordable cost.

3.7.2 Article 9 Accessibility

This article mandates State parties to enable persons with disabilities to live

independently and participate in all aspects of life, and have appropriate measures

to ensure access, on an equal basis with others, to information and

communications, including information and communications technologies and

systems.

3.7.3 Article 21 Freedom to expression and opinion, and access to information

This includes for example, that the information and expression of views and opinions should be in accessible formats, such as the use of sign language or recognized alternative and augmentative communication systems, and that people with complex communication needs are provided the ability to have their voice heard, to make choices and to have control in their life.

3.7.4 Article 24 Education and Article 30 Participation in cultural life, recreation,

leisure and sport

These articles also have application in terms of ensuring AT solutions to education and participation in cultural and leisure activities are provided and available in accessible formats.

Conclusion

4.1 Yooralla supports in principle the general AT framework. There are areas in this framework that would benefit further strengthening and enhancement specifically in relation to the areas outlined through this consultation process.

4.2 The implementation of the AT framework will benefit from a further clarification that is more inclusive of the voice of people with cognitive disability and/or with multiple and complex support needs. It is also important that there are many people with disabilities who present with changing support needs due to their progressive medical condition and/or deteriorating health condition.

4.3 There should be more rapid and broader investment in building and strengthening the capacity and empowerment of individuals to exercise their rights in the AT process.

4.4 Yooralla has provided some practical suggestions to many of the questions posed in this consultation and look forward to further collaboration and engagement with the NDIA.

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Ienca, M., Kressig, R. W., Jotterand, F., & Elger, B. (2017). Proactive ethical design for

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Inigo, E. A., & Albareda, L. (2016). Understanding sustainable innovation as a complex

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Peterson-Karlan, G. R. (2015). Assistive technology instruction within a continuously

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Sanders, E. B. N., & Stappers, P. J. (2012). Convivial toolbox: Generative

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