In what can only be described as an effort to shift costs from the Commonwealth funded NDIS to the individual states the NDIA have decided to cease funding the assessment of swallowing disorders and the creation of the Mealtime Management Plan. Their reasoning seems to be that as this assessment and Plan are developed to prevent health complications, the state based Health systems should be the ones who complete this work.
In most places, people who have permanent and long term disabilities which cause swallowing disorders have been supported by professionals in the disability sector.
We have been unable to speak to NSW Health to determine whether they are ready to take referrals for these assessments and how we can start to make those referrals without delay, given that the consequences of people having to wait can be catastrophic.
This is yet another decision of this reform where front-line staff and people with disabilities are left assuming has been based on budget, with little to no discussion with the people who actually do the work or experience the disability or with regard to how this affects the marketplace and the additional challenge of coordinating services for people who are more and more often being broken up into body parts.
We are putting together a perspectives paper collecting a range of stories from both providers and participants on how this will affect people with disabilities and the sector in general. If you can help please click through at the end of the article.
Now let’s chat a little more...
It’s hard to argue that there are many areas of support more important that the supports to a person with eating and swallowing challenges at mealtimes. Recently Speech Pathology Australia announced that their conversations with NDIA have confirmed the rumours that we had been hearing for some time – a decision had been made to cease funding support for the development of Mealtime Management Plans because in their reasoning, this is the responsibility of state based Health services.
We have not been able to establish as to whether the Health systems have a process in place to pick this work up or whether they have the capacity to complete assessments in the persons home rather than in a clinic or hospital which is best practice for people with complex disabilities.
Cue #NDISeyeroll followed by #NDISfreakout by, well, everyone involved with people who have swallowing disorders, including the people who have swallowing disorders. Let’s take a look at why and how you might be able to help us lobby to have this decision reviewed.
Let’s talk about swallowing.
Swallowing is a reflex controlled by the brain just like breathing and your heartbeat. When food, drink or saliva is gathered together and pushed towards the back of your mouth your brain sends the message to the muscles of your throat to do their thing to safely pass that ‘ bolus’ from your mouth into your food pipe (oesophugus).
The food pipe is right next to your airway. So it's easy to see how if something is going wrong, things can go pretty badly, pretty fast.
These swallowing movements are carefully coordinated and timed and when they don’t work together in the right way or with the right timing, small amounts of food, drink or saliva can slide into your airway (trachea) instead – usually triggering a huge coughing fit, watery eyes and a sharp back slap from someone close by.
Coughing is essential because it acts to catch that food, drink or saliva and move it back up into your mouth where you can spit it out or try swallowing it again.
The last thing you want is for it to keep going down your airway because then it can end up in your lungs. There it can cause infection, pneumonia, long term lung scarring and in worst -case scenarios, death.
It’s worth remembering that we swallow all day every day and night – just as we breathe and our heart beats all day every day and night. So if something is going wrong it affects your whole entire life, even when you are sleeping.
Here is a nice easy to understand video which explains how food can ‘go down the wrong way’.
Swallowing disorders and the consequences
A swallowing disorder is called dysphagia. Dysphagia can relate to challenges with mealtimes from the time that food enters the mouth to the time that the food is swallowed and safely lands in the stomach.
A dysphagia assessment will consider the persons ability to take the food from the fork or spoon into the mouth, chewing, moving the food around the mouth and to the back, the speed and coordination of the swallow, any reflux or regurgitation, the persons positioning and seating, any dietary considerations and any behavioural challenges that might be contributing.
A dysphagia assessment will usually be done by a speech pathologist. Sometimes other professionals such as dietitians, occupational therapists and psychologists may also support the process.
A special test, like a moving X-Ray, is called a modified barium swallow test which can show whether a person is swallowing safely.
Here’s a video from YouTube showing what this XRay looks like.
Dysphagia can cause a number of health problems. These include weight loss, choking, chest infections, pneumonia, low oxygen levels, fatigue, diet related illness, dehydration and as we’ve already said, death.
Dysphagia also causes a number of other challenges, especially affecting a person’s quality of life. If a person is having trouble eating and drinking, or coughing all the time when they eat and drink – it makes it much harder to eat out, much harder for someone to support them, can lead to social isolation and mental health disorders such as depression.
Can you imagine feeling as though you are drowning every time you have a drink?
A person experiencing dysphagia also presents more risk to a provider. We don't feel very comfortable raising that issue - but there are already reports of people who present with high risks finding it harder to purchase supports.
Dysphagia can be caused by a number of factors including physical disability, degenerative disease, brain injury, intellectual disability and ageing among many others.
Dysphagia occurs when the food, drink or saliva cannot be safely taken into the mouth, chewed, swallowed and digested in the expected way.
What does the evidence tell us?
The most recent NSW Ombudsman’s report of reviewable deaths (with a new one due out imminently) reveals that 25% of deaths of people with disabilities who are in care are caused by respiratory complications. This includes several incidents of choking and aspiration pneumonia. Many of these deaths are preventable and are often a result of a Mealtime Management Plan not being followed.
Frighteningly, several people die every year of choking on their birthday or other celebratory day. An assumption can be made that a well meaning family member or carer has decided to offer the person some sort of treat – or the treats have been made available to the person in some other way by accident - that does not conform to the recommended texture or consistency detailed in the Plan.
This does not include the poorer mental health outcomes experienced by people who become isolated as a result of their swallowing issues, nor does it include their levels of physical discomfort or loss of other skills caused by their ongoing 24 hour challenges with swallowing.
What is a Mealtime Management Plan?
A Mealtime Management Plan is the plan that is worked out with the person who has the swallowing challenges. It contains strategies for how to manage the swallowing issues with the main idea of keeping the person safe, comfortable and healthy but also to ensure that the person is experiencing the best quality of life possible and participating in all of the activities that they choose.
The Mealtime Management Plan for people with complex and / or multiple challenges often has input from a variety of professionals. A dietitian will look at the nutritional aspects; the speech pathologist will look at the physical act of eating and swallowing; the occupational therapist will look at seating and positioning and a psychologist or behavior specialist may contribute if there are challenges in these areas too.
The people who develop the Mealtime Management Plan would also support the people who are supporting the person with the challenges at mealtimes to understand how to best support them. This can mean providing a particular texture or consistency of food and drink, assisting the person to sit in the best position, provide the right equipment and utensils and teach them how to ensure that the person is participating in the things that they enjoy to the best of their ability.
In the end the person should have a clear Mealtime Management Plan that covers all the challenging issues and that enables them to engage in mealtimes – and life - safely and comfortably.
Where do people go to get a Mealtime Management Plan?
Up until now, this depended a little on the circumstances of the person with the swallowing challenges.
Like many professions, people have tended to specialize in particular areas. Many professionals in the disability sector have supported people with disabilities with their mealtimes over many years. They have developed many skills through extra training and learning; they understand and account for the specific challenges for people who have long-term complex disabilities and their families and carers.
Professionals in the Health system also have highly refined skills. Their specialization varies depending on which part of the Health system they work in. Generally they offer amazing support to people with swallowing difficulties while they are admitted to hospital and sometimes specialist teams within the Health system would support people who have specific conditions. Traditionally a person with a long- term disability would be referred to a disability specialist provider.
Rural and remote areas may be exceptions where access to services can be limited.
Let’s think about the cost of getting this wrong
When a person is experiencing mealtime challenges and these are not well managed, there are some pretty predictable and terrible outcomes for the person including serious illness, reduction in participation in the activities that they like and enjoy, risks for the support team around that person, mental health challenges and even in come cases, death.
Let’s remember that many NSW Health professionals are very good at this work – so if they are ready with referral systems, have trained up their staff accordingly and have capacity to do the work – everything might just work. We have no indication that any of this is in place.
Looking coldly at the costs when things go wrong in terms of money, when you consider the possible trips to the GP, emergency, possible ambulance trips, admission to hospital or the ICU, then the ongoing cost of care and support if long term health problems result. Of course these costs are all borne by the state based health systems rather than the NDIS.
However an increase in the level of disability which can result from chronic disease or acute illness is likely to result in higher ongoing support needs which will impact in higher NDIS plans.
Any provider who is supporting the person will carry the risk of someone in their care becoming gravely unwell.
And let’s not forget the emotional cost for the person and their family.
Now we get to the risk for the marketplace. A number of businesses specializing in this work have already started up and established themselves in the current NDIS market, many of these professionals have left other positions to take their skills and experience into their own businesses. These businesses are now at risk of closing. There are non-government organisations who also have recruited staff who are skilled and experienced with this work and also stand to take a hit to their income if this work is redirected to Health.
And now for the REALLY ridiculous possible outcome
If this decision is maintained and the Health system are expected to pick up the creation of Mealtime Management Plans we are going to have a serious coordination issue on our hands at the very least.
If a person requires support for both swallowing and communication – which is common- they are likely to need two separate speech pathologists.
If an OT from Health determines that a seat needs to be modified or ordered to ensure safe eating – who prescribes and pays for that? How is this coordinated with the person’s other OT who is managing their other related disability needs?
Who trains the support team around the person? NDIA are suggesting that they still fund this, however this would mean that it is likely that the person who trains the team would not be the person who writes the plan.
In a sector where we are already in the red zone when it comes to workforce skill and capacity, this decision stands to actively block the person with the swallowing disorder from accessing the professionals with the most experience for their particular situation.
Let’s be clear. There is nothing INDIVIDUALISED, or PERSON CENTRED or even SENSIBLE about this decision.
What can you do?
We are trying to gather information about how this decision will affect all stakeholders with a view to creating a Perspectives Paper.
We would like to hear from Providers both non-government and private and Participants, and would love to hear from NSW Health too. Your contribution can be anonymous.
You can get started by clicking this link.