Submission to the Joint Standing Committee on NDIS.

I worked in the Victorian health service for 13 years as a Division 1 Registered Nurse. My job was to provide temporary Care Coordination to complex clients who were at risk of presentation to hospital to support them to manage their health and reduce hospital presentations. Part of this job involved assisting clients with referrals to ongoing supportive services which included NDIS. Since its inception I have supported numerous clients with referrals to the NDIS and discovered that there were significant barriers to timely and adequate support in particular for complex clients. I am keen to relate these difficulties to the Joint Standing Committee on NDIS in order to support change towards better outcomes for the clients it represents. In order to illustrate these difficulties I will at times draw on experiences with specific non-identified clients and situations.

I retired 18 months ago and have not worked in this capacity since then so I accept that some of these difficulties may now have been resolved and changed processes in place from the ones that I am relating.

Exclusion of clients with certain diagnosis from the scheme.

A part of my job was supporting clients who had pulmonary disease or heart failure. At times these were people in their 40s, 50s or 60s and often presented as profoundly disabled, only able to walk short distances or perform the most basic of activities without extreme shortness of breath even when medically stable. I supported numerous of these clients with applications to NDIS and they were declined on the basis that they had a medical condition which would be supported by publicly funded Health Services. As you would appreciate, whilst the health service supported these clients to manage their condition through medical treatments or through hospital services if their condition exacerbated, say due to an infection, it did not support them with services to address their disability such as home care, meals, personal care, shopping, access to the community, etc.

When compared to persons that had other medical diagnoses for example Parkinson’s Disease, MS or stroke, whom the NDIS accepted onto the scheme and were eligible for support, this seems highly discriminatory. In reality the source of all disability is primarily a medical condition and it does not seem logical that some persons are excluded from the scheme dependent on their diagnosis and regardless of their degree of disability. I would also like to point out that all of these persons of whom I am talking had Disability Support Payments through Centrelink.

Another difficulty for these clients, who were under 65 years old and excluded from NDIS was the complicated and slow process in place for them to apply for Care Packages to give them adequate support for their needs. Firstly, they had to submit an access request form to NDIS even though it was known that it would be declined. This is because the Aged Care Assessment Service (ACAS) would not do a younger person’s assessment until these clients had documentation to say that they had been declined support through the NDIS. Then the letter from NDIS declining support and a further application form had to be submitted to the Aged Care Assessment Service who would come out to the client’s home and do a younger person’s assessment for an Aged Care Package. Aged Care Packages at the time when I was working were taking a very long time to be issued and the client often had died before they received any or all of the full level of support they were assessed as needing. They were however, entitled to limited support through state funded services (at that time through the council, now privatised) but these were largely inadequate to their needs.

This was a most frustrating and needless additional process brought about by a lack of communication between NDIS and ACAS in deciding where these clients should apply. Instead clients were subjected to pointlessly applying to NDIS even though it was understood that they were not going to be able to access services through that agency and adding many months to the time in getting desperately needed services.

It is unlikely that many persons without the assistance of professional support would be able to

navigate this complicated system with the potential of people missing out on essential services and having to enter aged care facilities at a young age, rather than being able to stay in their own home.

2. Limited assistance with application to NDIS and the process of gathering evidence of disability.

Application to the NDIS is not set up well for complex clients who may be experiencing difficulty with language, literacy, computer literacy, learning difficulties, and intellectual capacity or have limited energy due to complex health needs, in particular if they have no or limited support of carers or if the carers also experience these issues. Clients receive limited support from NDIS with the process of completing access request forms and providing evidence of their disability. To give an example of the difficulties for some people in trying to access the scheme I worked with two adults in their 50s who were applying to NDIS to support them with intellectual disability. Both were having difficulty dealing with complex health issues because of their intellectual disability and both had limited literacy, access to the internet or other family support. Neither of these clients’ GP records any had evidence of their disability. Fortunately, they both were able to report that they attended a Special School and that they were receiving Centrelink payments for their disability. It was only because they were linked in with our service for their chronic health issues that they got the support to search for evidence of their disability. By getting their consent to approach Centrelink and the special school that they attended the evidence was gathered for NDIS support.

My point is that this whole process would have been impossible for them to complete without help which was not forthcoming from the NDIS and it was only due to circumstance that our service was involved at the time allowing them to successfully complete the NDIS access request form and gather the needed evidence. Both these clients were eventually successful in accessing support through the scheme. However, potentially persons will be missing out on support because they are unable to negotiate these difficulties unassisted.

3. Cost of gathering evidence.

If GPs have no evidence of a client’s disability then it falls back on the clients themselves to provide evidence either through documentation from other agencies, as in the example above, or through further assessment by a health professional. An assessment for the purpose of gathering evidence of disability is not funded by the NDIS and can be a costly process for the person with the disability as there is limited public funding for such assessments and few allied health professionals who will bulk-bill for this. Such costs can be prohibitive to the clients and provide another barrier to access to the scheme.

4. GP

For the majority of persons completing the access request form the treating professional involved is the person’s GP. As previously mentioned GPs do not always have evidence of a person’s disability and at times are unaware of the disability. Most GPs are time poor and do not necessarily have the expertise to assess for functional ability as say an Occupational Therapist would. The treating professional has to complete a fairly lengthy assessment which is impossible to complete during a standard GP consultation time. The result is either a delay of completion of the form or the form being completed hurriedly and often erroneously which can delay or prevent the person’s access to the scheme. Additionally this is a burden on an already overworked GP system and an additional cost to the client if the GP does not bulk-bill which is becoming increasingly the case.

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There is no support from the NDIS for a client who is experiencing difficulty in getting their Access Request Form completed through the GP system.

5. Length of time taken to process Access Request Form.

The time taken for NDIS to process Access Request Forms took many months despite it being stated on the NDIS web-site that a decision would be reached in 30 days. Once the Access Request Form was lodged it was impossible to track. Phone calls to NDIS were unable to find out where the application was within the assessment process. If a complaint was lodged regarding the length of time being taken it also took many months to be responded to.

6. Poor understanding of disability of NDIS assessment officers.

The example which I am going to give was when I was supporting a 15 year old son of one of my clients with application to the NDIS. He had a diagnosis of autism spectrum disorder and his mother reported increasing anxiety and social isolation around the onset of puberty, with his school attendance dropping to one or two mornings per week. He was spending most of the time in his bedroom and was reluctant to perform self-care tasks like showering. His mother was dealing with very difficult health and psycho-social circumstances herself and in no way had the capacity to deal with the prolonged and complicated process that this application turned into.

The neuropsychological assessment with the diagnosis of Autism Spectrum Disorder (ASD) as well as a letter from a paediatrician who was treating him for his mental health issues was forwarded to the NDIS as evidence of his disability. He was denied access to the scheme initially and then again on appeal. When I spoke to the assessment officer she stated he was being declined access because his anxiety could be treated through a mental health plan with ongoing appointments with a psychologist and this could be accessed through main-stream health services. I felt very shocked that this assessment officer had not taken into consideration the diagnosis of ASD and how it would be contributing to this boy’s overall situation. I was also shocked at the lack of care or compassion shown towards a young person in very dire circumstances. The assessment officer appeared unaware that help from specialist autism services could be advantageous to him and that he could only gain access to such services through NDIS.

Interestingly, in the end I went to a Disability Advocacy Service who legally represented him and he was given access to the scheme immediately. Again I would like to stress the unfairness of this as if our service had not been involved to facilitate seeking of further help this child would have been left without any support. Persons who do not have the time, energy, or resources to keep pushing or seek further expert help will miss out on supports. Clearly this 15 year old boy cannot in these circumstances advocate for himself and his mother who had complex medical and psycho-social issues was unable to also.

I would also like to point out that it took around 18 months from the initial submission of the Access Request Form until he was accepted onto the scheme and received any services. Even once he was accepted onto the scheme he had to wait some time before a suitably qualified support coordinator could be found. Meanwhile this young person was left in very difficult circumstances and missed a lot of schooling and social opportunities at a crucial time of his life.

7. Overall time taken to get services and supports

I have already discussed the length of time it took for Access Request Forms to be processed but even once that was accepted there was a significant time before a planning meeting could be made and then to get services on board.

Additionally if the clients care needs changed then this required another meeting and assessment which took considerable time and put additional stress on the client or carer in particular if this was a crisis situation e.g a carer having to take time out for their own health.

8. Lack of training or experience of support coordinators.

There is no standardised training or education for support coordinators. Some I came across were very experienced in a field of disability and some had appropriate tertiary qualifications. Others, however, had very limited experience of disability and of services and systems. One example was a Support Coordinator who was an overseas student, recently arrived in Australia with limited experience or training in Mental Health (my client’s primary disability) and no knowledge of services and systems in Australia. I had to provide this Support Coordinator with substantial help in order to implement the plan. Most people accessing the NDIS would not have that level of support from an outside organization and would require a Support Coordinator of adequate experience in order to actualise their plan.

9. Support Coordination V Care Coordination.

The other issue with the role of support coordinators is that they see their role only to implement the Care Plan which has been agreed to. For many of the clients who I was supporting what they additionally required was a degree of care coordination so that there was, as required, communication channels between all the services being provided. To illustrate what I mean I will give an example of my client who had a NDIS plan due to her intellectual disability. She also had a chronic health issue and had been presenting frequently to hospital. It was discovered that she was not able to read the letters sent to her from the hospital and she was missing appointments and follow up tests and procedures. It was also discovered that she did not always understand when she was at appointments what she was being asked to do and subsequently medications she was prescribed were not being administered and put in her webster pack and she was not contacting services for follow up tests and appointments. Her NDIS plan provided for Support Workers to help her with reading letters and supporting her at appointments. The funding was there for that. However, within that process there is a series of actions that have to be taken to ensure that one stage of the process leads on smoothly to the next, which requires quite complex communications between the providers of NDIS services and health services. The Support Worker who reads the initial appointment letter has to be aware to take action so that a support worker can be organized to accompany the client to the appointment and that support worker has to be aware that the client requires support with making follow up appointments, having medications administered and organizing support for the next tests and appointments. Whose responsibility is this communication and organization? If one step in the process falls down the whole process fails. It is not enough to just provide and implement funding in a plan for this (Support Coordination). It needs someone to be in charge of the whole process, communicating with all providers of care about their

• responsibilities in the process (Care Coordination). I met some Support Coordinators who took on a role of Care Coordination and provided good support but many saw that as beyond the role for which they were being employed and so the services that were being funded were of limited use. I am sure that if needed the NDIS could additionally fund Care Coordination but it was never offered to any of the clients that I supported.