Assistive Technology Inquiry

EARLY CHILDHOOD INTERVENTION

AUSTRALIA SUBMISSION

14 September 2018

Prepared by Enis Jusufspahic

National Manager, Sector Development

Early Childhood Intervention Australia Ltd

Level 19, 66 Goulburn Street, Sydney NSW 2000

PO Box 20690, Sydney NSW 2002

02 9873 2593 | www.ecia.org.au

Early Childhood Intervention Australia (ECIA) ………………………………………………………………………. 3

Executive summary …………………………………………………………………………………………………………. 5

Introduction ………………………………………………………………………………………………………………….. 6

SITUATIONAL ANALYSIS …………………………………………………………………………………………………… 6

Children age 0-6 with developmental delay and disability and Assistive Technology ..................... 6

Family perception of Assistive Technology ........................................................................................ 6

ECI Provider experience of Assistive Technology application process under the NDIS ..................... 7

NDIS ASSITIVE TECHNOLOGY PROCESS ISSUES ……………………………………………………………………… 8

Administrative cost ............................................................................................................................ 8

NDIS Assistive Technology planning processes ………………………………………………………………………. 8

Administrative processes ................................................................................................................... 9

Capacity building of a new system ..................................................................................................... 9

The Assistive Technology Market for children age 0-6 ………………………………………………………….. 10 Off the shelf items ……………………………………………………………………………………………………………. 10

CONSIDERATIONS …………………………………………………………………………………………………………. 11

What has been successful? .............................................................................................................. 11

 1. Applicability of NDIS Assistive Technology complexity ratings for children age 0-6 ................... 11

 2. Self-managing the Assistive Technology component of a child’s budget ................................... 11

 3. Prioritising and rapid response .................................................................................................... 12

 4. Streamline Assistive Technology Application process ................................................................. 12

 5. Market stewardship ..................................................................................................................... 12

 6. Equipment providers .................................................................................................................... 12

 7. Recycling equipment .................................................................................................................... 12

 8. Capacity building .......................................................................................................................... 13

 9. Interface with the State government........................................................................................... 13

 10. Other considerations: training and maintenance ...................................................................... 13

                                                2

Early Childhood Intervention Australia (ECIA)

Who we are

As the peak body for early childhood intervention professionals, ECIA represents its members at a state / territory and national level in advocating for the rights of young children with developmental delay and disability, and their families, to have access to high-quality early childhood intervention services and supports.

ECIA has a collaborative relationship with the NDIA and other relevant government departments and organisations, as we work together to build capacity and improve services. We provide relevant, contemporary information and resources to professionals working in the field of ECI, along with professional development opportunities.

Early Childhood Intervention Australia (ECIA) over the last 12 months has transitioned from a federated state / territory based organisation consisting of four member Chapters, into a national single entity company limited by guarantee.

The Chapters that transitioned represent the geographical areas of WA/NT, QLD, NSW/ACT and SA. ECIA VIC/TAS is not affiliated with ECIA, the national entity.

We acknowledge the previous work in this state conducted by the ECIA NSW/ACT Chapter and referred to in this submission.

What we support

ECIA endorses a framework of evidence-based practices that promote, encourage and support principles that drive positive outcomes for children and families. These practices include:

Family centred and culturally responsive practice, which creates culturally inclusive environments for families from all backgrounds, and recognises the central role of families in children’s lives.
Inclusive and participatory practice, which recognises that children, regardless of their needs, have the right to participate fully in their family and community life.
Engaging the child in natural environments, to promote inclusion through participation in daily routines, at home, in the community, and in early childhood settings.
Collaborative teamwork and capacity building practice, where the family and professionals work together as a collaborative and integrated team around the child, to build the capacity of the child, family, professionals and community.
Evidence base, standards, accountability, to ensure ECI services comprise of practitioners with appropriate expertise and qualifications who use intervention strategies that are grounded in research and sound clinical reasoning.

Outcome based approach, which focuses on outcomes that parents want for their child and family, and on identifying the skills needed to achieve these outcomes.

These practices lay the foundation for each individual’s successful participation as a valued member within our diverse community. This has been articulated in the ECIA National Guidelines on Best Practice in Early Childhood Intervention.

What is Early Childhood Intervention? Early Childhood Intervention (ECI) is the process of providing specialised support and services for children age 0-6 with developmental delays or disabilities and their families, in order to promote development, well-being and community participation.

ECI Services provide parents and families with the knowledge, skills and support to meet the needs of their child and to optimise the child’s development and ability to participate in family and community life.

ECI Services provide individually tailored supports to the child including therapy, education, counselling, service planning and coordination, warm referrals to community and mainstream services. Services are focused on supporting the child in their natural environments and in their everyday experiences and activities.

www.ecia.org.au

Executive summary

Families of children age 0-6 with developmental delay and disability are new to disability and as such have limited knowledge of Assistive Technology and are reliant on ECI service providers for support and advice. Very young children quickly outgrow equipment and require ready access to new equipment. As such the four complexity levels ascribed for Assistive Technology apply different to children age 0-6.

The Assistive Technology process is long and complicated, particularly for complex items. The complexity is a feature carried over from the previous state based Assistive Technology systems. Currently the process takes anywhere between 3 to 12 months which means that very young children miss developmental milestones for the lack of essential equipment. Create capacity in the system to prioritise applications based on developmental/functional needs and the likely impact of not having timely Assistive Technology supports.

The Assistive Technology market is fragmented and highly specialised, reflective of the iterative historical development of equipment services which are gradually transitioning to a market based approach. The demand for Assistive Technology is high, especially for complex items. Supply is limited and is dependent on historical needs for that region. The demand for the various services necessary to close the Assistive Technology loop (specialist assessors, equipment providers, loan pools) is very high but the supply of these secondary goods and services is highly regionally dependent and limited in scope. As the market is rapidly expanding and ECI services are actively skilling up on how to work with the new Assistive Technology systems under the NDIS, there is a need for further training and capacity building activities to address the waiting period and administrative costs discussed below.

ECI providers who prescribed and source Assistive Technology for NDIS participant families have identified a number of issues impacting on providers and families such as high administrative costs, lack of access to trial equipment as well as cumbersome and unresponsive administrative processes.

ECIA members call for effective and responsive arrangements that families can manage without ECI practitioner involvement with a clearly defined role for the roles and responsibilities of ECI practitioners in the Assistive Technology process.

Introduction

ECIA prepared a nine question survey of our membership that informed our submission. Wherever possible phrasing is kept to preserve meaning as conveyed to us by our member organisations.

We received 37 responses to the survey from the following jurisdictions:

23 from NSW;
9 from SA;
2 from the ACT;
2 from the NT;
1 from WA; and
1 not declared.

The majority of members who responded to the survey (51 per cent) employ less than 20 staff. Organisations that employ 20 to 50 staff, and 50 to 100 staff account for 22 per cent each. The remaining 5 per cent of respondents employ more than 100 staff.

The majority of our members who completed the survey predominantly prescribe Assistive Technology, 83 per cent of respondents. Fourteen per cent of respondents source Assistive Technology on behalf of NDIS participants and 3 per cent provide Assistive Technology products.

Situational Analysis

Children age 0-6 with developmental delay and disability and Assistive Technology

Children age 0-6 grow rapidly which means that their needs for assistive technology changes quickly according to developmental needs that are often unknown at the commencement of a yearly plan.

Family perception of Assistive Technology

Families of children age 0-6 with developmental delay and disability are new to disability and as such have limited understanding of Assistive Technology and what is appropriate given the child’s development. Many families are reliant on the advice of ECI professionals about the functional impact of disability or developmental delay on the child’s development and what equipment is best suited to support the child at the specific developmental stage.

Families are concerned about societal perception of their child who now uses Assistive Technology and the associated stigma. Many parents are apprehensive that the Agency may not agree to fund the assistive technology and that the cost will sit with the family.

ECI Provider experience of Assistive Technology application process

under the NDIS

Access to Assistive Technology under state based mechanisms such as EnableNSW, Northern Territory Disability Equipment Program and the South Australian Domiciliary Equipment Service.

In the NT where the NDIS rollout commenced on 1 July 2018, the process associated with Assistive Technology is currently slow and very time intensive for ECI practitioners involving the following steps:

requesting equipment to be brought to the NT for trail,
trailing equipment,
prescription process,
specialist seating clinic appointments,
getting quotes,
seeking approval from the Disability Equipment Program Committee,
purchase equipment,
instruct the family and the child on the use of equipment.

The complexity of the Assistive Technology process has been replicated under the NDIS resulting in very significant delays. Our members are unanimous in their feedback when they tell us that it takes anywhere between 6 to 12 months to close the Assistive Technology loop. The necessary time and effort required to secure a piece of Assistive Technology presents a significant barriers to many families. And that by the time that the application is reviewed quotes and perceptions are often out of date and/or needs have changed.

This means that children are missing developmental milestones while waiting for Assistive Technology. A NSW ECI provider told us about a young child who waited 9 months for a standing frame, which was crucial to assist with her learning to walk. Because of the extended wait her ability to walk has been delayed by a year. There is no capacity in the system to prioritise application based on developmental/functional needs and the likely impact of not having timely Assistive Technology supports.

NDIS Assistive Technology Process Issues

Administrative cost

The NDIA allocated plan funding for assessment of assistive technology needs. More often than not this is insufficient in order to provide advice to the family about equipment and to undertake the various Assistive Technology administrative processes.

Some ECI providers negotiate with families who are often reluctant to approve the amount of time needed for the administrative cost of Assistive Technology adding an hour per fortnight in the service agreement to cover report writing, phone calls to source equipment, assessment trialling. The remainder is usually provided on pro bono basis. By way of illustration, South Australian ECI providers tell us that it takes 4 hours to complete the NDIS Assistive Technology application template and the provider’s specific appendices.

ECI providers tell us that much of the child’s plan funding can be taken up with trials and formfitting and actual developmental goals take a back seat while equipment is being dealt with.

ACT and NSW ECI providers tells us that staff are spending much time is spent by therapists answering questions and liaising with planners who have limited knowledge of Assistive Technology prescription. This is a further administrative cost for ECI service providers.

NDIS Assistive Technology planning processes

ECI providers have commented extensively about the significant role played by specialist equipment providers who provide tailored advice and loan equipment for trails and give quotes. There is no provision for equipment providers to be reimbursed for trails which often involve travel to client’s home.

It is difficult to find loan equipment to affect trails. Loan pools and equipment providers who are able to provide equipment for trial are limited and have significant waiting lists for trail items. Many loan pools are out of date and providers have to get items shipped in from larger cities.

Smaller providers are not able to invest in an equipment pool due to costs associated with purchasing, maintenance and storage.

Providers are concerned about the requirement to trail customisable equipment such as wheelchairs, which need to be adapted to the individual or made to measure. And because there are a limited number of providers who provide such equipment it is difficult to secure three quotes.

Administrative processes

eCI providers commented extensively that there is little or no communication with the family or the eCI practitioner supporting the family about the progress of the Assistive Technology application. As a result practitioners are having to continually follow up.

If child’s Assistive Technology needs change there is no provision to make a simple revision to the plan without triggering a full plan review. In NSW an ECI Provider told us that in a six month period one child has had three separate plan reviews each time a new piece of equipment was required within a period of 6 months.

Capacity building of a new system Traditionally Assistive Technology sat outside of the ECI service providers’ core remit as assessment and prescription were largely delivered by specialist state government agencies. Now that Assistive Technology has come under the NDIS under a single workflow there is a need for capacity building of prescribers/assessors and NDIA planners and delegates on clinical reasoning.

eCI practitioners who specialise in equipment prescription tell us that their clinical justifications are often questioned by planners who require trials of low cost equipment for a child with complex needs for whom low cost solutions are not appropriate.

eCI practitioners often mentioned that they are not clear on the nature of the application process and the specific evidence required for different kinds of assistive technology. Furthermore, many practitioners report inconsistency indecision making between different planners related to Assistive Technology applications.

The Assistive Technology Market for children age 0-6

The Assistive Technology market under the NDIS is in development. The picture of the market for children age 0-6 is one a highly localised, fragmented market for many items and services necessary to the close the Assistive Technology loop.

The demand for Assistive Technology is high especially for children with complex physical needs in NSW and the Northern Territory specifically specialised seating, wheelchairs, complex gait trainers and standing frames.

The supply of Assistive Technology is dependent on the type of equipment and location. Overall, the supply of Assistive Technology in rural and remote NSW is poor epecially for the items which physiotherapists often prescribe.

Providers in the Northern Territory and the Australian Capital Territory identified freight as significant issue as more complex equipment needs to be shipped in from larger cities. Providers in NSW are experiencing significant delays in securing complex Assistive Technology.

The supply of hearing products in NSW through Australian Hearing is adequate. However, providers in South Australia speak of undersupply of hearing and vision products. We’ve also heard from members that car modification suppliers are challenging to come by in NSW.

Our members tell us that there is little competition for communication devices in the ACT and that there are limited registered providers who are able to provide communication software.

Off the shelf items ECI providers told us that it is more difficult to find registered providers for off the shelf items and that these items are more expensive to order from a registered provider than it is to purchase directly from the supplier such as off the shelf orthotics, quad sticks, simple bath seats and spio suits.

CONSIDERATIONS

What has been successful? Using previous plan funding ECI practitioners have been able to trial and assess a multitude of devices and develop a comprehensive report to provide at a plan review meeting. This has often led to more successful outcomes due to the completeness of the application.

ECI providers spoke highly of working with specialist equipment providers who are able to give tailored advice, provide access to loan equipment and potentially recycling equipment. See point 6 and 7 below. The tailored advice provided by specialist equipment providers should be underestimated in the Assistive Technology market which is continually evolving.

Please see below the outline of key issues that ECIA believes need further consideration by the Inquiry.

Applicability of NDIS Assistive Technology complexity ratings for children age 0-6 The four Assistive Technology complexity ratings do not apply to children age 0-6 in the same way that they apply to adults. What is seen as low risk for an adult may not be low risk for a child given their communication abilities, growth and changing needs especially for those with degenerative disabilities. Consider working with the ECI sector on developing appropriate complexity measures which are reflective of individual circumstances.
Self-managing the Assistive Technology component of a child’s budget Members who completed our Assistive Technology survey told us that there is an advantage for families to self-mange the purchase of Assistive Technology for Level 1 and 2 items due to the relatively low risk nature of these items which can be procured quickly from general market as opposed to the NDIS registered provider market. See discussion in the Market section about off the shelf items and discussion about the Applicability of NDIS Assistive Technology complexity rating for children age 0-6 above. Level 3 and 4 equipment is usually overly complex for families to traverse without support and guidance.

It was also pointed out that many families, specifically those experiencing vulnerability, need additional support to facilitate access to Assistive Technology. There are those self-servicing educated families who are able to follow the prescription, choose from providers and select an appropriate piece of equipment. However there is also an element of risk that families may choose inappropriate equipment they have read about online and not follow prescription.

Prioritising and rapid response

There is no capacity in the system to prioritise applications based on developmental/functional needs and the likely impact of not having timely Assistive Technology supports.

Our member would also like to see allowances in the Assistive Technology rules for made to measure or customised equipment which cannot be trailed before the order is placed.

Streamline Assistive Technology Application process

Market stewardship

The Agency has a role in developing the market for good and services which are in short supply, especially in rural and remote regions. Please see section on the Market.

Equipment providers

The role of equipment providers in the NDIS system needs to be defined. Equipment providers have functions with regard to:

specialist advice on selecting equipment;
trialling;
quoting.

Equipment providers could also have a role in:

running loan pools like the loan pool maintained by the Intervention Support Program for Long Day Care Centres.
recycling equipment which could be used in the general load pool or for the purposes of a trial.

Recycling equipment

Children age 0-6 outgrow equipment rapidly. We suggest introducing a mechanism for recycling equipment that is no longer being used. Technical Aid to the Disabled (TAD NSW) are a volunteer run organisation who repair and modify unneeded Assistive Technology for the use of people with disability.

8. Capacity building

Given the complexity of the Assistive Technology system our members have identified the need for targeted training for prescribers/assessors and NDIA planners and delegates. Please see section on Capacity Building above.

Consider the value of specialist planners similar to the specialist ECI planners who have in-depth knowledge of Assistive Technology, preferably from an Allied Health background to act as technical advisors.

ECIA emphasises the importance of local forums to build capacity of ECI service providers in the Agency’ systems and processes, and for the Agency to understand the history of service provision and local needs and issues.

9. Interface with the State government

State government equipment services such as EnableNSW, Northern Territory Disability Equipment Program and the South Australian Domiciliary Equipment Service are now NDIS providers.

EnableNSW is a registered provider of Assistive Technology under the NDIS. ECI providers have commented on the administrative load involved in placing an order with EnbleNSW who use their own portal and specific forms.

10. Other considerations: training and maintenance

There is no specific funding allocated for training on how to use a device with the child and the family in child’s different environments. Families and practitioners use the child’s ECI capacity building budget for the training which does not leave sufficient funding for work towards goals which were agreed upon in the plan.

There is no provision in an NDIS plan for maintenance and repairs. When an item needs to be repaired, especially a more complex item used daily such as a wheelchair, the participant needs to put a request for review on the grounds of change of circumstances.

Assistive Technology Inquiry EARLY CHILDHOOD INTERVENTION AUSTRALIA SUBMISSION