Update: the Federal Government has partly conceded on this issue and a temporary solution has been put in place. Read more here.
Swallowing has become the unexpected new battleground of the NDIS. In late 2017, the NDIA wrote to Speech Pathology Australia saying that they would not be funding swallowing assessments and support plans. They argued NDIS’s role was confined to training family and support workers to implement the plan. This position has provoked a passionate outcry from many Participants, families, providers and advocates. Support for safe swallowing is literally something many NDIS Participants cannot live without.
Safe swallowing is key to life and community participation
Many people with intellectual and physical disability find it difficult to swallow as a result of their disabilities. This condition, dysphagia, can make it hard for a person to get adequate nutrition and create risks of the person choking or becoming ill with pneumonia. There is a danger of death.
The NSW Ombudsman reports that, over the 15 years to 2017, 65 percent of disability services residents who died had swallowing difficulties.
"Our reviews over the past 15 years have shown that dysphagia has significant and often fatal implications for the health of people with disability. It is critical that people with disability … have timely access to skilled speech pathologists to obtain an accurate assessment of their swallowing function and clear recommendations [as to action]" (Ombudsman’s Report of Reviewable Deaths 2014-2017).
It also is common for a person with a swallowing problem to be excluded from day to day activities. Sometimes this is due to discomfort or poor health, sometimes it is practical – especially when there are feeding tubes involved.
Speech pathologists in particular have a vital role to play in assessing a swallowing problem and developing an eating and drinking plan to help the person get adequate nutrition in a safe way.
Around Australia, every State Government disability department provided speech pathologists to do this work, a function that was picked up by the NDIA.
So why won’t the NDIA fund swallowing assessments and support plans?
So as you can see, swallowing is a vital support for many NDIS Participants. So why won’t the NDIS fund it?
The Agency argues that swallowing assessments and plans are required to prevent the health risks of aspiration and choking. Therefore, they contend, they are the health system’s responsibility.
Section 34 (f) of the NDIS Act says that, for a support to be funded, the NDIA must be satisfied that the support is most appropriately funded through the Scheme and is not more appropriately funded through other general systems of service delivery as part of a universal service obligation or in accordance with reasonable adjustments required under discrimination law.
There are a whole myriad of supports which the absence of which, when taken to their most extreme conclusion, can result in death. That does not mean that they all fall within the purview of health. The health system is only responsible for diagnosing and treating a health condition, supports that improve the Participant’s ability to undertake activities of daily living are the responsibility of the NDIS. The ability to eat and drink safely is clearly an activity of daily living.
To date, the health system has not taken the lead on swallowing assessments and plans for people with disability. This has predominantly been the accepted responsibility of the disability service system in the Australian states and, until last year, the NDIS. The health system does not have a workforce that is adequate in numbers or the specialist skills needed to fill this role.
NSW, and presumably other states, have given the NDIA all of the funding that it used to pay for disability speech pathologists and other professionals. The NDIA cannot now expect the health system to provide this capacity.
Moreover, the NDIS (Support for Participants) Rule 7.4 says:
The NDIS will be responsible for supports related to a person’s ongoing functional impairment and that enable the person to undertake activities of daily living, including maintenance supports delivered or supervised by clinically trained or qualified health practitioners where these are directly related to a functional impairment and integrally linked to the care and support a person requires to live in the community and participate in education and employment.
Swallowing assessments and plans are supports related to a functional impairment that impedes the person being able to eat and drink and perform other activities such as go to school.
Over many months, NSW Council for Intellectual Disability (CID) argued this issue back and forth with the NDIA but without any significant progress.
CID’s debate with the NDIA has been particularly focused on the central role of speech pathologists. However, we have also emphasised that assessment of a swallowing problem and development of an eating and drinking plan is a team effort. Input may be needed from a range of professionals including a dietician and a behaviour support practitioner. The right diet can be key to safe swallowing and an eating and drinking plan needs to take account of behaviour support needs. All of these inputs are disability supports that should be funded by the NDIA.
What can be done?
In planning meetings, Participants do not have to take no for an answer if the planner says the NDIA will not fund swallowing assessments and plans. Providers can support Participants to challenge the planner’s decision.
In September, CID launched our Hard to Swallow campaign for a change in the NDIA’s position. Over 24,000 people have signed our petition, and many have also written directly to the Australian Families and Social Services Minister Paul Fletcher.
Find out how you can take action by visiting our Hard to Swallow campaign page. If you work with Participants and families who will be impacted by the issue, we encourage you to make them aware of the campaign.
Since the launch of the campaign, we have had valuable discussions with NDIA CEO Rob De Luca and Deputy CEO Vicki Rundle. We look to them and the Minister to fix this problem without delay.
Jim Simpson is a Senior Advocate at NSW Council for Intellectual Disability.