Design for life
Author: Amanda Lyons
GPs want to know more about their role in helping eligible patients access the National Disability Insurance Scheme.
Stephen’s* parents are very optimistic about his future as he takes his first steps into adulthood.
An 18-year-old man with Down syndrome, Stephen leads a relatively independent life. He is in his last year of high school, has good communication skills and gets on well with his peers. His parents believe that with some employment training and support Stephen will be able to get a job when he finishes school.
In order to help Stephen continue towards an independent future, they make an appointment to see their GP, who has known their son since he was a child. As the family’s long-time healthcare provider, their GP is the first point of contact in accessing the National Disability Insurance Scheme (NDIS) so Stephen can get the ongoing support he will need to live a more self-sufficient life.
‘GPs are involved in supporting their patients with disability throughout their life,’ Adj Assoc Prof Bob Davis, GP and Chair of the RACGP Specific Interests Disability network, told Good Practice.
‘They are there when the diagnosis of the person’s disability is made, they are there in support as patients go through school and into the workforce with an adult support service, right into aged care.’
There are close to 460,000 people in Australia under 65 who live with at least one permanent and significant disability.1 The funding and delivery of care for these people has undergone an enormous change since July of last year, with the nation-wide rollout of the NDIS.
The introduction of such a major scheme has not altered GPs’ importance to the care of patients with disability. However, despite their central role as assessors of patient eligibility, the majority of GPs recently polled by the RACGP reported feeling they had not received adequate information about the scheme, and did not feel supported in providing the required services or evidence for patients.2
‘The NDIS has little widespread input from general practice and none of the packages invite GP feedback,’ an RACGP member said at a GP advocacy network meeting in Newcastle in September this year. Given such concerns, what key information should GPs know about the NDIS?
The provision of disability funding and care in Australia prior to the NDIS tended to be somewhat piecemeal.
‘For example, if you acquired your disability through a road traffic accident, everything was supplied. But if you have disability from birth, then you had no coherent support, with services provided through various government agencies,’ Adj Assoc Prof Davis said.
‘The other issue was that patients tended to go from one process or transition point to the next with no clear plan, so services needed to be made on the run.’
As a national system for a very broad population, the NDIS is designed to be ‘person-centred’ and tailored to individual needs.
‘People with disability have the same right as other Australians to determine their best interests and have choice and control over their lives,’ Chris Faulkner, General Manager Operations for the National Disability Insurance Agency (NDIA), the body responsible for the rollout, implementation and administration of the NDIS, told Good Practice.
‘The NDIS recognises that everyone’s needs and goals are different, and provides people with disability with individualised support and the flexibility to manage their supports to help them achieve their goals and enjoy an ordinary life.’
The shift towards a person-centred model is also reflected in funding distribution.
‘Previously, individual service providers would be funded and patients would go to them for that service,’ Adj Assoc Prof Davis said. ‘Now, the funding comes from the individual and the individual can purchase the service from these providers.’
The GP’s role
While a person with disability is likely to receive treatment from a range of specialists, their GP remains the key practitioner in their lives.
Dr Bee Hong Lo, a developmental paediatrician, has found patients often feel more comfortable with their GP as healthcare ‘point-person’ when dealing with issues of disability.
‘A lot of parents who have children with disability or developmental delay, their first approach is to their GPs,’ she told Good Practice. ‘Even if they’ve been referred to the paediatrician by their GP, many choose not to go back to the paediatrician.’
This gives GPs a central role when evidence is required to support a patient’s access to the NDIS. This process may involve completing the ‘supporting evidence’ section of the NDIS Access Request form; documenting that the patient has, or is likely to have, a permanent disability; and confirming the extent to which the patient has a significant disability-related impairment through the provision of copies of relevant reports or assessments.
In Stephen’s case, the Access Request form included questions about his mobility, motor skills, communication, social interaction, learning, self-care and self-management.
His GP was able to use records of Stephen’s assessments over the years, including one from a paediatrician and copies of an intelligence test (WISC–IV), in order to complete the form more accurately.
Once a patient is granted access to the NDIS, a local area coordinator or NDIA planner will help develop a plan for use of the funding. These plans are structured according to outcomes and funding categories, and explain how the funding itself is expected to help the person with disability.
While GPs are not directly involved in developing the plan, familiarity with it can be helpful for ongoing care.
‘It may be useful to be aware of what services can be purchased by the patient with NDIS funds, as they may complement those available through Medicare; for example, supports over and above services that can be accessed through a mental health plan,’ he said.
RACGP members have reported frustration that the NDIS does not inform them regarding whether patient applications have been successful, and nor do GPs automatically receive a copy of their patients’ plans. There is also concern that patient assessments for the NDIS will themselves be too time-consuming and costly, but Faulkner reassures that they are intended to fit into a GP’s normal timetable.
‘GPs are expected to complete an Access Request form during a consultation, paid through Medicare,’ she said.
Adj Assoc Prof Davis provides further detail on how GPs can seek remuneration for extra time taken on NDIS assessments.
‘Chronic disease management [Medicare] items facilitate GPs’ involvement in the development of management plans, team care arrangements and case conferencing, which really tie into the types of support that NDIS provides,’ he said.
‘The other thing GPs need to be aware of, especially if their patients have an intellectual disability, is that they will have access to annual health assessment items 703, 705 and 707. They can use those to follow up on their patients.’
In addition to the individual patient-focused aspect, the NDIS has a second side that is focused on information, linkages and capacity-building (ILC). The purpose of ILC is to facilitate inclusion for people with disability by funding organisations to carry out activities at a community level.
Issues and concerns
However good the intentions, the NDIS rollout has not been without its problems. One of the most pressing issues is the challenge of providing information for NDIS access, as many eligible patients have a complex medical history.
‘Often the patient has more than one disability. They may have an intellectual disability, problems with vision and hearing and even a psychiatric disorder, all of which might impact on their ability to participate in the community,’ Adj Assoc Prof Davis said. ‘It’s important GPs cover all of those.’
Adj Assoc Prof Davis has worked with Inclusion Melbourne, a service for adults with intellectual disability, to provide a resource that helps GPs include the correct information in NDIS applications. However, NDIS staff members can also have issues with information collection.
‘For instance, a young man with Down syndrome was interviewed over the phone [by an NDIA planner] about his disabilities,’ Adj Assoc Prof Davis said. ‘He was quite articulate and over the phone you would think he knew what was going on. But his resulting plan did not include the fact that he was blind.
‘That is an extreme example, but the problem is, once the plan is set up, it can be difficult and take some time to change.’
Dr Lo emphasised that early intervention in childhood disability is often handled differently from adult disability under the NDIS, with more focus on its ILC aspect, because childhood conditions can often be subject to change and may not end up being lifelong. This can be another point of confusion for patients, who are often overwhelmed by a surfeit of information related to the NDIS – even when it may not actually apply to them or their family.
‘People don’t understand and they think, “If my child has poor fine-motor skills, or is slow in developing language, or might be a bit deaf, I can get NDIS funding”,’ Dr Lo said. ‘But that’s often not the case at all.’
Similarly, Adj Assoc Prof Davis has also found that some GPs and patients can be confused as to what does and does not qualify for NDIS funding.
‘NDIS will fund a physiotherapist and [occupational therapy] where the issue would be access to the community, but it may not fund it in that post-operative recovery period in which one would expect health to be involved,’ he explained.
While these distinctions may seem confusing, they arise from the fact that that NDIS is intended to complement the mainstream health system rather than replace it. Under this rationale, NDIS funding is provided for supports that help people to overcome disabilities in their day-to-day lives, such as aids, equipment and home modifications. This also extends to allied health and other therapies, including physiotherapy, speech therapy or occupational therapy, for care specifically related to the disability.
Conversely, the diagnosis, assessment and treatment of health conditions remains the responsibility of the health system. This includes clinical services, such as GPs, hospital care, surgery, specialists, dental care and medications. Sub-acute care such as palliative and post-acute care, including nursing care and wound management, also falls under this category.
RACGP members’ most common criticism of the NDIS remains its lack of consultation and communication with GPs.
In response, Faulkner said the NDIA has had success in building GP understanding and connections through regular meetings with Primary Health Networks.
It remains to be seen how the relationship and information-sharing between the NDIA and GPs will develop as the scheme continues to take its place in Australian healthcare. But Adj Assoc Prof Davis believes that, despite initial problems, the NDIS will ultimately have a positive impact on the provision of care for patients with disability.
‘The NDIS is quite a monumental change in the approach to disability and, as GPs, we can facilitate the process and use it for benefits to patients’ health,’ he said.
* Not his real name.
- National Disability Insurance Agency. A GP’s guide to the NDIS. Canberra: NDIS. Available at www.ndis.gov.au/people-disability/fact-sheets-and-publications [Accessed 4 October 2017].
- The Royal Australian College of General Practitioners. In practice newsletter, 28 July 2017. East Melbourne, Vic: RACGP, 2017. Available at www.racgp.org.au/yourracgp/news/inpractice/28-07-2017 [Accessed 4 October 2017].