Inquiry into Assistive Technology

The Benevolent Society

Joint Standing Committee on the

NDIS inquiry into Assistive Technology

The Benevolent Society

www.benevolent.org.au

Inquiry into Assistive Technology

The Benevolent Society

Level 1, 87 Bay St

Glebe

NSW 2037

www.benevolent.org.au

Inquiry into Assistive Technology

The Benevolent Society

Introduction The Benevolent Society welcomes the opportunity to contribute to the Joint Standing Committee on the National Disability Insurance Scheme’s (NDIS) Inquiry into Assistive Technology (AT).

The Benevolent Society has several concerns regarding accessing AT under the NDIS, including:

the timeframes involved for accessing basic equipment and complex technology;
the lack of clarity around AT processes;
communication with the National Disability Insurance Agency (NDIA) regarding AT;
the adequacy of funding for AT equipment and repairs in NDIS plans; and
the impact on clients of delays in the provision of AT equipment under the NDIS.

These issues are addressed in detail below.

In response to these issues, The Benevolent Society recommends that:

The NDIA prescribes indicative timeframes for:

a) decisions on AT equipment requests; and

b) the delivery of approved equipment

for each of the AT complexity levels set by the NDIA.

This will set clear parameters for service providers and assist practitioners to manage the expectations of NDIS clients in regards to requesting and receiving AT under the NDIS.

The NDIA clarifies the application process for AT and clarifies which AT is covered under the NDIS.
The NDIA reviews and clarifies the requirement for trialling equipment as part of the AT process.
The NDIA sets up the NDIS IT system so that an immediate ‘receipt’ notification, with a receipt number, is generated when an AT request is lodged.

This will ensure that service providers are confident that requests have been correctly lodged, and that they have a receipt number that they can use to track and follow up on the progress of the request.

The NDIA ensures that AT requests can be uploaded to the participant’s portal by practitioners, in addition to being sent to the AT email address or planner.

This will ensure that evidence of an AT request is centrally stored and accessible to all relevant parties.

The NDIA makes it mandatory step that a participant or their parent/carer are asked during the planning process about what AT equipment they currently use, and funding for that equipment, including for repairs and maintenance is included in the participant’s NDIS plan.
The NDIA ensures that the AT equipment line item for people in rural or remote areas reflects the fact that equipment and repairs are often more expensive in these areas.
The NDIA looks into how the AT line item in a plan can be quarantined, so that review or amendment to the AT line item does not affect the entire plan and service booking and billing system.

Inquiry into Assistive Technology

The Benevolent Society

9.  The NDIA develops clear guidelines for young people with disability in residential aged care,
   which include consideration of the AT requirements of these NDIS participants.

2. About The Benevolent Society The Benevolent Society is Australia’s first charity. We’re a not-for-profit and non-religious organisation and we’ve helped individuals, families and communities achieve positive change for over 200 years. The Benevolent Society has approximately 1,615 staff and 658 volunteers who, in 2016/17, worked with 54,038 clients. We deliver services from over 60 locations in Australia with support from local, state and federal governments, businesses, community partners, trusts and foundations.

Since our earliest days, we’ve been driven by a vision of a just society where all Australians live their best lives. We support people across the lifespan, delivering services for children and families, older people, women, people with mental illness, people with disability and through community development programs.

Following the acquisition of disability support services from the NSW Government in 2017, we are now one of the largest providers of specialist clinical disability services in Australia.

Response to the Terms of Reference From the experience of our staff delivering services to people with disability under the NDIS, we have identified a number of issues with the provision of AT under the scheme. These include:

3.1 Long timeframes for processing and finalising AT requests

Staff have noted that some NDIS participants have had positive results and now have access to AT, such as vehicle modifications which they would not have had before. However, the majority of our staff experience significant delays when sourcing both basic equipment and more complex technology for our clients. Some of our staff report waiting over a year for equipment requests to be processed.

Under the current system there is no indicative timeframe for the provision of equipment under the NDIS. It is very difficult for our staff to manage client expectations regarding their request for equipment when we are unable to give them a clear indication of the expected timeframes for the approval of sometimes very basic but extremely necessary equipment.

Many of our staff have noted that under the NDIS there appears to poor coordination between the NDIA and EnableNSW. There is a standard contract /stock list for sourcing equipment from EnableNSW which in theory should simplify the AT application process and expedite approval and delivery of equipment. This does not appear to be the case as AT requests have been lost between the NDIA and EnableNSW and often equipment from EnableNSW takes longer to arrive than equipment from other sources.

Another issue of concern is that different teams at the NDIA review the request at different stages. Given that quotes for equipment are only valid for three months, and it is rare that AT requests are resolved within three months, our staff often have to provide new quotes every three months. This is time consuming and inefficient.

A side-effect of the delays in getting equipment approved is that the person that requested the equipment may no longer be involved with the client, as they may have moved on or the funding for

Inquiry into Assistive Technology

The Benevolent Society

their services under the plan may have been exhausted. In these cases, there may no longer be a practitioner or funding available under the client’s plan to set up the equipment.

Delays in receiving requested AT equipment

Case study 1:

One of our staff members placed an order for equipment for four clients in November 2017 (three NovaCHATS and one iPad with TouchCHAT with word power). Nearly one year later, these four clients have not yet received this equipment.

Case study 2:

One of our young clients had outgrown her standing frame. Our staff member, a physiotherapist, prescribed a new standing frame. Following the submission of the AT request, it took the NDIA four months to contact us by phone to request further information about some of the specifications in the prescription. Following the phone call, the additional information was sent to the AT panel. Five months later we received an email advising that the request would not be approved because the proposed cost was above the NDIS benchmark costs. The NDIA requested more evidence around why the child needed the specific standing frame that was prescribed, further delaying the provision of the equipment.

Case study 3:

In December 2017, an Occupational Therapist ordered a bed from the EnableNSW contract list and a mattress from another supplier. The mattress was supplied in February 2018, but the bed was not supplied until August 2018.

Recommendation:

1.  The Benevolent Society recommends that the NDIA prescribe indicative timeframes for:
         a)  decisions on equipment requests; and
        b)  the delivery of approved equipment

    for each of the AT complexity levels set by the NDIA in order to set clear parameters for service providers and to manage the expectations of NDIS clients in regards to requesting and receiving AT under the NDIS.

3.2 Lack of clarity around AT processes, including equipment trialling

In our experience, the process regarding AT requests is not transparent. There are no clear guidelines in relation to applications for AT. Our staff report that the process is confusing and there is a lack of clarity regarding which applications are required when EnableNSW stock items are requested, and who to send them to. Our staff have described the AT forms as ‘poor in both content and useability’ and ‘repetitive, very time consuming and difficult to fill in’.

There is also a lack of clarity on what equipment is covered by the NDIS. Initially, feedback received from the NDIA advised that mainstream devices like iPads would not be covered by the NDIS, but we have seen that sometimes iPads have been approved. The lack of clarity and consistency again makes it difficult to manage client expectations.

Inquiry into Assistive Technology

The Benevolent Society

The AT process overall, and specifically the requirement to trial equipment, is time consuming, and often eats into the time allocated to practitioners to provide other interventions for clients.

Some staff report that there is a lack of clarity regarding the level of equipment trialling and quotes required at the needs assessment stage. Clarity is needed as to when the trials and quotes are needed and for which forms.

The equipment trialling stage can often be delayed as there can be lengthy wait times to book appointments to trial equipment with suppliers and to get comparison quotes which are required under the NDIS. We have found in some cases NDIA planners don’t understand that customised equipment cannot always be trialled.

Our staff find it very frustrating to have conducted extensive trials on equipment, to only have their recommendation following the trials declined or questioned by the NDIA who may suggest trialling less expensive but inappropriate technology. We have also had the situation where second opinions on equipment have been sought from other organisations, which has further delayed the equipment request process.

It is particularly difficult for practitioners in regional and remote areas to comply with the trialling requirement and ensure that equipment is provided to clients in a timely manner. In some regional areas, equipment suppliers may only visit the area every four months so opportunities to trial equipment is limited. When the practitioners and the family have done their research and are certain that the equipment they are requesting is what is needed to support the participant to function, being asked to trial other equipment which the practitioner and participant know is unsuitable is time consuming, costly and appears unnecessary.

Recommending inappropriate equipment

Case study 4:

A client with Huntington’s disease requested a special chair and bed which accommodates particular needs associated with her condition. People with Huntington’s disease need equipment which is robust and well-padded. The AT request was declined and the planner suggested a cheaper model chair which did not have the necessary supports to meet our client’s needs.

Recommendation:

The Benevolent Society recommends that:

The NDIA clarifies the application process for AT and clarifies the equipment which is covered under the NDIS.
The NDIA review the requirements for trialing of equipment as part of the AT process.

3.3 Communication with the National Disability Insurance Agency (NDIA)

In addition to the time that it takes to process AT requests, it is also difficult to communicate with the NDIA in relation to AT requests.

One of the biggest problems with the system is that service providers do not receive an acknowledgment that an AT request has been received by the NDIA. This requires staff to constantly follow up requests for equipment with the NDIA to not only ensure that the request has been received and is being processed, but to get updates on the progress of the request.

Inquiry into Assistive Technology

The Benevolent Society

We have also found that it can be difficult to get consistent or detailed information on equipment requests from the NDIA. It is common for our queries for an update on an AT request to be met with a generic standard response of “don’t worry, it is progressing well” without any further details on anticipated timeframes for finalisation of the request. Alternatively, when we are able to access someone willing to provide an update on a request, we sometimes find that there is no record of the request or that the request documents have not been saved in the client’s file.

In one instance, it took ten months to work out that the NDIA did not have a record of the AT form which we submitted. In another case, our staff member was advised to send AT forms directly to an NDIA staff member who then moved on from her position. It was subsequently discovered that there was no record of the AT forms in the system so they all had to be re-submitted.

As with other aspects of the NDIS, we see inconsistency in terms of decisions across the NDIA. We have certainly seen inconsistency in decisions to approve AT for clients with similar needs as different offices and different planners have differing views on what is considered ‘reasonable and necessary’. There is also no formal system in place to request a review of a decision regarding AT. There is an appeals process but it can be stressful for families to pursue this and there may not be enough money left in the participant’s plan for the therapists to assist with the review process.

Recommendations:

The Benevolent Society recommends:

1. That the NDIA set up the NDIS IT system so that an immediate ‘receipt’ notification with a receipt number is generated when an AT request is lodged. This will ensure that service providers are confident that requests have been correctly lodged, and that they have a receipt number that they can use to track and follow up on the progress of the request.
1. The NDIA ensures that AT requests can be uploaded to the participant’s portal by service providers, in addition to being sent to the AT email address or planner. This will ensure that evidence of an AT request is centrally stored and accessible for all relevant parties.

3.5 Insufficient funding in plans for AT, maintenance and repairs

The Benevolent Staff has found that generally the amounts allocated for equipment and repairs in NDIS clients’ plans are inadequate to meet their needs. We have also noted that the fact that sourcing and repairing equipment in remote and regional areas is more expensive than in metropolitan centres (as it is required to be sourced from a different location or needs to be sent away for repairs) is not reflected in NDIS plans.

As noted above, managing the AT request process (which includes trialling the equipment, writing the AT form and following up with the NDIA) is time consuming and either eats into the funding for clinical services in a client’s plan or is part of the additional, unbillable administrative work which has emerged as a negative aspect of the NDIS. It is very difficult for staff to have done all this preparatory work, utilising funding under the client’s plan, and then have the equipment request declined - this essentially means that the participant has not received a positive outcome from the expenditure of plan funds.

Inquiry into Assistive Technology

The Benevolent Society

Given that NDIS plans do not include flexible or contingency funding, whenever funding in a plan is insufficient and additional funding is needed for new equipment, equipment upgrades or repairs a plan review is required. Whenever a plan is being reviewed, the plan is placed on hold and service providers are unable to continue to deliver services to the client, or to bill for services already delivered. Anytime an adjustment is required to the AT line item in a plan- the plan is placed on hold, and clients and providers are often not advised that the plan review is underway.

While we generally recommend that there should be flexibility built into plans so that they can accommodate changes as a result of changes in circumstances, we would like to see the system changed so that amendments can be made to the AT line item without it affecting the whole of the plan.

Also, in many cases, clients or parents/carers of clients are taking it upon themselves to fund repairs to equipment because they cannot wait for the NDIS approval or review process for essential equipment. But in cases where clients are not able to cover the cost of the equipment or repairs themselves they are simply going without necessary equipment, which impacts on the quality of their life.

The benchmark costs for equipment are set by the NDIA and are not always known by therapists. However, in some cases, therapists have been asked by planners to request a discount on the quoted price of equipment to come within the benchmark. In one instance, a supplier wrote to the NDIA to advise that they would not reduce the price of a shower chair for a client by $200. Our client was unable to cover the additional cost and his 79 year old mother paid for it..

Insufficient funding in NDIS plans for AT, maintenance and repairs

case study 5:

The Benevolent Society has two clients who are adult brothers within the ASD spectrum. They are both completely non-verbal who would greatly benefit from access to AT. Our clients’ plans were reviewed in January and we were informed by our clients’ mother than an AT form was included as part of the plan review. However, no funding for AT was included in either plan.

case study 6:

One of our clients is a two-year old girl with Osteogenesis Imperfecta, a very difficult and complex condition. Our client’s plan only has one line item for therapy, despite her requiring a wide range of services such as physiotherapy, occupational therapy, orthotist etc. The plan does not include any specific AT funds. Our client’s mother is trying to buy necessary equipment for her daughter using her own funds.

case study 7:

When our 14 year old client’s wheelchair broke down she was unable to attend school. Her parents self-funded the repairs because they were unable to wait, possibly months, for the NDIA to approve the repairs.

Inquiry into Assistive Technology

The Benevolent Society

Recommendation:

The Benevolent Society recommends that:

6.   It should be a mandatory step in the planning process that a participant or their parent/carer
   are asked about what equipment they currently use and that funding for that equipment,
    including for repairs and maintenance is included in the participant’s NDIS plan.

7.  The equipment line item for people in rural or remote areas reflects the fact equipment and
    repairs are often more expensive as it needs to be sourced from a different location and
   often needs to be sent away to a large regional centre for repairs or maintenance.

8.  The NDIA looks into how the AT line item in a plan can be quarantined so that review or
  amendment to the AT line item does not affect the entire plan and service booking and
     billing system.

3.6 AT needs of young people in residential aged care

The Benevolent Society recognises that there are a number of issues regarding young people with disability who have been placed in residential care, including their access to appropriate AT. A case study below demonstrates this issue. We would like to see better guidelines from the NDIS addressing the AT needs of young people in residential aged care.

Case study 8:

A young NDIS participant had a stroke and was placed in residential aged care. She required a light weight wheelchair to use so that her family could continue to take her on outings in the family vehicle. The participant was advised by the NDIA that she should use one of the residential aged care facility’s wheelchairs even though these were a shared resource and were not fit for the purpose as they were too difficult for family members to lift in and out of the family vehicle.

Recommendation

9.  The Benevolent Society would like the NDIA to develop clear guidelines for young people
   with disability in residential aged care, which include consideration of the AT requirements
    of these NDIS participants.

3.7 Impact on clients

There are a range of negative impacts created by the current problems relating to access to AT under the NDIS. As noted previously, the inability to know when basic and necessary equipment will be available is very stressful and frustrating for our clients. The delays in the approval and supply of equipment not only causes anxiety or distress for clients, it can also endanger their safety and hamper their ability to participate in their everyday lives. Clients and their parents/carers are having to shoulder additional financial burdens to pay for simple equipment or repairs because they cannot wait for the lengthy NDIA approval processes. It is unacceptable that delays and difficulties in the AT process are requiring some NDIS participants to safely and productively go about their daily lives without equipment that enables them to do so.

Inquiry into Assistive Technology

The Benevolent Society

Impact of long and uncertain AT processes on clients

Case study 9:

Our staff member requested approval for a $44,000 power wheelchair with a postural seating system for a client. The NDIA questioned why the client’s current chair was not repaired instead. The client’s current chair had a history of breaking down often, which resulted in the client being confined to his home (which raised the costs in his capital supports for self-care). On one occasion our clients chair broke down leaving him stranded in the middle of the road and an ambulance needed to be called to remove him from the road. As a result, our client is currently house-bound while waiting for the NDIA to approve the new chair.

Case study 10:

We have a client with moderate intellectual disability, autism and complex communication needs. She is mostly non-verbal and has not previously used AT. Our client’s NDIS plan includes the goal of improved communication and increased independence. Our speech pathologist recommended a specialised AT device with voice output, after extensive trialling, data collection and reporting which detailed good outcome measures. This was reviewed by two senior speech pathologists. The Benevolent Society’s speech pathologist submitted an AT report in June 2018 and was told that the request would be considered in the client’s NDIS plan review in July. This did not happen. When contacting the NDIA for an update on the request, our staff member was advised that the Support Planner did not approve the request because the device was not deemed ‘reasonable and necessary’. The AT request was not assessed by the AT Team, which is required for a high cost item. No alternative options were approved, even though our client’s complex communication needs were outlined extensively in her assessment and lower cost options were included (but not recommended) in the request. Our speech pathologist’s attempts to have the AT form assessed by the NDIA’s AT Team have to date been unsuccessful. Our speech pathologist has used valuable therapy time from the client’s plan to continually follow up this request.

Meanwhile our client is without a communication system and is very upset that she has not yet received the device that she trialled and found extremely useful. With her limited understanding and difficulties problem-solving or understanding the concept of time, she continues to search the house high and low, thinking that someone has hidden the device from her or that maybe tomorrow it will return. So far, she has been waiting for three months for a decision, which is not as long as some clients have been waiting, but given the needs of this client- the impact of the wait on her is significant.