The government says NDIS supports should be ‘evidence-based’ – but can they be?

The federal government and National Cabinet has committed to rebooting and fixing the National Disability Insurance Scheme (NDIS) for people with disabilities. It plans to invest more in the National Disability Insurance Agency (NDIA), which administers the scheme, and drive change to support participants better.

As part of these initiatives, the government has indicated a move towards prioritising evidence-based supports to ensure funds are appropriately and effectively spent. NDIS minister Bill Shorten promised “a renewed focus on evidence and data,” adding that he wanted to

[…] get rid of shoddy therapies that offer little to no value to participants or desperate parents.
The rhetoric raises important questions. How is “evidence” defined? And can it be usefully applied within the complex NDIS context?



Medical research origins​

The term “evidence-based practice” comes from the medical field, mostly from research trials with a clear cause-and-effect relationship. A specific drug or treatment (termed “interventions”) might be given to certain subjects and then any changes are tracked with objective measurement tools, such as blood tests, improvements in health or changes in function.

Research evidence is ranked in a hierarchy to denote its reliability and significance. Expert opinion sits at the base, then case studies, then randomised control trials (in which subjects are randomly assigned to experimental or control groups) and systematic reviews (which look at the results of lots of different trials and studies combined) at the prestigious peak.

But this narrow idea of what evidence is can be problematic when applied to a complicated scheme like the NDIS.

Disability is different​

Firstly, disability is not a medical condition. It is part of being human and affects everyone uniquely due to factors such as each person’s unique socio-, psychological and physical make-up and the context and environment they are in. Support services need to be tailored for each person and their circumstances.

This uniqueness of intervention and the multiple and often unpredictable benefits and outcomes of intervention makes measuring clear cause-and-effect relationships inaccurate or incomplete in many cases. This calls for a different approach to the definition of evidence.

To add to this complexity, each support service is unique in terms of set-up, context and resources available.



Finally, disability research has historically been overlooked and severely underfunded compared to medical research into drugs, detection or therapies. The quality and quantity of published research available is very limited.

3 things we can consider about supports​

So, how can we judge NDIS supports and practice to ensure funds are appropriately spent?

Evidence within complex environments needs to incorporate:

1. Qualitative outcomes

The current focus on highly rigorously published research study outcomes, for example from Randomised Control Trails, should be complemented with qualitative research studies. These studies may involve fewer participants but incorporate the voices of people with disabilities. Participants can articulate their views on services provided, outcomes and benefits, and their preferences. Systematic reviews can then be formulated to survey and summarise quantitative and qualitative research studies.

2. NDIS participant feedback

Research takes a long time. Information can be gathered more quickly from NDIS participants that will reflect their choices, priorities, values, preferences and individual context. Service providers should be regularly surveying and monitoring their client groups. The NDIS Review is due to report in the coming months and they are also investing in a wellbeing measure and the government has developed a Disability Strategy Outcomes Framework to track and report improvements for people with disability.

3. Supports in context

Real-world supports don’t happen in a vacuum. To judge effectiveness and suitability we will need information about service provision. This might include the available resources to provide services (such as telecommunications access in remote areas of Australia), contexts (such as geographical or population demographics including culture and language), and organisational factors such as service delivery and set-up (for example, inter-disciplinary teams or sole-practitioner models).


file-20230502-1574-jc5i1v.jpg

Evidence sources in a real-world context need to take in quantitative and qualitative recommendations. Shutterstock



Evidence-based recommendations in the real world​

An example of how these three important components can inform evidence-based practice can be found in the recently released guidelines for supporting children with autism and their families.

Autism is the largest disability category for NDIS, with around one in three active NDIS participants receiving funding for the condition. The fresh guidelines include information from extensive systematic reviews, incorporate qualitative and quantitative research studies, and the voices of autistic people, families and service providers. The surrounding context of service provision – how and where supports are delivered in the real world – was described and applied to recommendations.

This broader view and application of evidence-based practice is more appropriate for the supports the NDIA provides funding for. However, these types of evidence sources are currently limited. We do not have them available for all disability groups or age groups.

Investments will need to be made to focus on developing these evidence sources and ensuring the government stays true to its commitment of working together with people with disability and the sector to provide “choice and control” and effective support.

This article was first published on The Conversation, and was written by Kobie Boshoff, Senior lecturer, Occupational Therapy, University of South Australia
 
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The federal government and National Cabinet has committed to rebooting and fixing the National Disability Insurance Scheme (NDIS) for people with disabilities. It plans to invest more in the National Disability Insurance Agency (NDIA), which administers the scheme, and drive change to support participants better.

As part of these initiatives, the government has indicated a move towards prioritising evidence-based supports to ensure funds are appropriately and effectively spent. NDIS minister Bill Shorten promised “a renewed focus on evidence and data,” adding that he wanted to


The rhetoric raises important questions. How is “evidence” defined? And can it be usefully applied within the complex NDIS context?



Medical research origins​

The term “evidence-based practice” comes from the medical field, mostly from research trials with a clear cause-and-effect relationship. A specific drug or treatment (termed “interventions”) might be given to certain subjects and then any changes are tracked with objective measurement tools, such as blood tests, improvements in health or changes in function.

Research evidence is ranked in a hierarchy to denote its reliability and significance. Expert opinion sits at the base, then case studies, then randomised control trials (in which subjects are randomly assigned to experimental or control groups) and systematic reviews (which look at the results of lots of different trials and studies combined) at the prestigious peak.

But this narrow idea of what evidence is can be problematic when applied to a complicated scheme like the NDIS.

Disability is different​

Firstly, disability is not a medical condition. It is part of being human and affects everyone uniquely due to factors such as each person’s unique socio-, psychological and physical make-up and the context and environment they are in. Support services need to be tailored for each person and their circumstances.

This uniqueness of intervention and the multiple and often unpredictable benefits and outcomes of intervention makes measuring clear cause-and-effect relationships inaccurate or incomplete in many cases. This calls for a different approach to the definition of evidence.

To add to this complexity, each support service is unique in terms of set-up, context and resources available.



Finally, disability research has historically been overlooked and severely underfunded compared to medical research into drugs, detection or therapies. The quality and quantity of published research available is very limited.

3 things we can consider about supports​

So, how can we judge NDIS supports and practice to ensure funds are appropriately spent?

Evidence within complex environments needs to incorporate:

1. Qualitative outcomes

The current focus on highly rigorously published research study outcomes, for example from Randomised Control Trails, should be complemented with qualitative research studies. These studies may involve fewer participants but incorporate the voices of people with disabilities. Participants can articulate their views on services provided, outcomes and benefits, and their preferences. Systematic reviews can then be formulated to survey and summarise quantitative and qualitative research studies.

2. NDIS participant feedback

Research takes a long time. Information can be gathered more quickly from NDIS participants that will reflect their choices, priorities, values, preferences and individual context. Service providers should be regularly surveying and monitoring their client groups. The NDIS Review is due to report in the coming months and they are also investing in a wellbeing measure and the government has developed a Disability Strategy Outcomes Framework to track and report improvements for people with disability.

3. Supports in context

Real-world supports don’t happen in a vacuum. To judge effectiveness and suitability we will need information about service provision. This might include the available resources to provide services (such as telecommunications access in remote areas of Australia), contexts (such as geographical or population demographics including culture and language), and organisational factors such as service delivery and set-up (for example, inter-disciplinary teams or sole-practitioner models).


file-20230502-1574-jc5i1v.jpg

Evidence sources in a real-world context need to take in quantitative and qualitative recommendations. Shutterstock


What I fail to understand is how can a person with chronic depression and anxiety and debilitating back pain not get onto NDIS and somebody else with less severe symptoms of all the 3 get on it seemingly very easily. Those that I know that are on it say they are worse off than being on the NDiS. Probably not thought through very well and now have another white elephant run by a minister that knows little about everything.

Evidence-based recommendations in the real world​

An example of how these three important components can inform evidence-based practice can be found in the recently released guidelines for supporting children with autism and their families.

Autism is the largest disability category for NDIS, with around one in three active NDIS participants receiving funding for the condition. The fresh guidelines include information from extensive systematic reviews, incorporate qualitative and quantitative research studies, and the voices of autistic people, families and service providers. The surrounding context of service provision – how and where supports are delivered in the real world – was described and applied to recommendations.

This broader view and application of evidence-based practice is more appropriate for the supports the NDIA provides funding for. However, these types of evidence sources are currently limited. We do not have them available for all disability groups or age groups.

Investments will need to be made to focus on developing these evidence sources and ensuring the government stays true to its commitment of working together with people with disability and the sector to provide “choice and control” and effective support.

This article was first published on The Conversation, and was written by Kobie Boshoff, Senior lecturer, Occupational Therapy, University of South Australia
 
The federal government and National Cabinet has committed to rebooting and fixing the National Disability Insurance Scheme (NDIS) for people with disabilities. It plans to invest more in the National Disability Insurance Agency (NDIA), which administers the scheme, and drive change to support participants better.

As part of these initiatives, the government has indicated a move towards prioritising evidence-based supports to ensure funds are appropriately and effectively spent. NDIS minister Bill Shorten promised “a renewed focus on evidence and data,” adding that he wanted to


The rhetoric raises important questions. How is “evidence” defined? And can it be usefully applied within the complex NDIS context?



Medical research origins​

The term “evidence-based practice” comes from the medical field, mostly from research trials with a clear cause-and-effect relationship. A specific drug or treatment (termed “interventions”) might be given to certain subjects and then any changes are tracked with objective measurement tools, such as blood tests, improvements in health or changes in function.

Research evidence is ranked in a hierarchy to denote its reliability and significance. Expert opinion sits at the base, then case studies, then randomised control trials (in which subjects are randomly assigned to experimental or control groups) and systematic reviews (which look at the results of lots of different trials and studies combined) at the prestigious peak.

But this narrow idea of what evidence is can be problematic when applied to a complicated scheme like the NDIS.

Disability is different​

Firstly, disability is not a medical condition. It is part of being human and affects everyone uniquely due to factors such as each person’s unique socio-, psychological and physical make-up and the context and environment they are in. Support services need to be tailored for each person and their circumstances.

This uniqueness of intervention and the multiple and often unpredictable benefits and outcomes of intervention makes measuring clear cause-and-effect relationships inaccurate or incomplete in many cases. This calls for a different approach to the definition of evidence.

To add to this complexity, each support service is unique in terms of set-up, context and resources available.



Finally, disability research has historically been overlooked and severely underfunded compared to medical research into drugs, detection or therapies. The quality and quantity of published research available is very limited.

3 things we can consider about supports​

So, how can we judge NDIS supports and practice to ensure funds are appropriately spent?

Evidence within complex environments needs to incorporate:

1. Qualitative outcomes

The current focus on highly rigorously published research study outcomes, for example from Randomised Control Trails, should be complemented with qualitative research studies. These studies may involve fewer participants but incorporate the voices of people with disabilities. Participants can articulate their views on services provided, outcomes and benefits, and their preferences. Systematic reviews can then be formulated to survey and summarise quantitative and qualitative research studies.

2. NDIS participant feedback

Research takes a long time. Information can be gathered more quickly from NDIS participants that will reflect their choices, priorities, values, preferences and individual context. Service providers should be regularly surveying and monitoring their client groups. The NDIS Review is due to report in the coming months and they are also investing in a wellbeing measure and the government has developed a Disability Strategy Outcomes Framework to track and report improvements for people with disability.

3. Supports in context

Real-world supports don’t happen in a vacuum. To judge effectiveness and suitability we will need information about service provision. This might include the available resources to provide services (such as telecommunications access in remote areas of Australia), contexts (such as geographical or population demographics including culture and language), and organisational factors such as service delivery and set-up (for example, inter-disciplinary teams or sole-practitioner models).


file-20230502-1574-jc5i1v.jpg

Evidence sources in a real-world context need to take in quantitative and qualitative recommendations. Shutterstock



Evidence-based recommendations in the real world​

An example of how these three important components can inform evidence-based practice can be found in the recently released guidelines for supporting children with autism and their families.

Autism is the largest disability category for NDIS, with around one in three active NDIS participants receiving funding for the condition. The fresh guidelines include information from extensive systematic reviews, incorporate qualitative and quantitative research studies, and the voices of autistic people, families and service providers. The surrounding context of service provision – how and where supports are delivered in the real world – was described and applied to recommendations.

This broader view and application of evidence-based practice is more appropriate for the supports the NDIA provides funding for. However, these types of evidence sources are currently limited. We do not have them available for all disability groups or age groups.

Investments will need to be made to focus on developing these evidence sources and ensuring the government stays true to its commitment of working together with people with disability and the sector to provide “choice and control” and effective support.

This article was first published on The Conversation, and was written by Kobie Boshoff, Senior lecturer, Occupational Therapy, University of South Australia
Moving closer to the Yankee style of medicine?
 
The federal government and National Cabinet has committed to rebooting and fixing the National Disability Insurance Scheme (NDIS) for people with disabilities. It plans to invest more in the National Disability Insurance Agency (NDIA), which administers the scheme, and drive change to support participants better.

As part of these initiatives, the government has indicated a move towards prioritising evidence-based supports to ensure funds are appropriately and effectively spent. NDIS minister Bill Shorten promised “a renewed focus on evidence and data,” adding that he wanted to


The rhetoric raises important questions. How is “evidence” defined? And can it be usefully applied within the complex NDIS context?



Medical research origins​

The term “evidence-based practice” comes from the medical field, mostly from research trials with a clear cause-and-effect relationship. A specific drug or treatment (termed “interventions”) might be given to certain subjects and then any changes are tracked with objective measurement tools, such as blood tests, improvements in health or changes in function.

Research evidence is ranked in a hierarchy to denote its reliability and significance. Expert opinion sits at the base, then case studies, then randomised control trials (in which subjects are randomly assigned to experimental or control groups) and systematic reviews (which look at the results of lots of different trials and studies combined) at the prestigious peak.

But this narrow idea of what evidence is can be problematic when applied to a complicated scheme like the NDIS.

Disability is different​

Firstly, disability is not a medical condition. It is part of being human and affects everyone uniquely due to factors such as each person’s unique socio-, psychological and physical make-up and the context and environment they are in. Support services need to be tailored for each person and their circumstances.

This uniqueness of intervention and the multiple and often unpredictable benefits and outcomes of intervention makes measuring clear cause-and-effect relationships inaccurate or incomplete in many cases. This calls for a different approach to the definition of evidence.

To add to this complexity, each support service is unique in terms of set-up, context and resources available.



Finally, disability research has historically been overlooked and severely underfunded compared to medical research into drugs, detection or therapies. The quality and quantity of published research available is very limited.

3 things we can consider about supports​

So, how can we judge NDIS supports and practice to ensure funds are appropriately spent?

Evidence within complex environments needs to incorporate:

1. Qualitative outcomes

The current focus on highly rigorously published research study outcomes, for example from Randomised Control Trails, should be complemented with qualitative research studies. These studies may involve fewer participants but incorporate the voices of people with disabilities. Participants can articulate their views on services provided, outcomes and benefits, and their preferences. Systematic reviews can then be formulated to survey and summarise quantitative and qualitative research studies.

2. NDIS participant feedback

Research takes a long time. Information can be gathered more quickly from NDIS participants that will reflect their choices, priorities, values, preferences and individual context. Service providers should be regularly surveying and monitoring their client groups. The NDIS Review is due to report in the coming months and they are also investing in a wellbeing measure and the government has developed a Disability Strategy Outcomes Framework to track and report improvements for people with disability.

3. Supports in context

Real-world supports don’t happen in a vacuum. To judge effectiveness and suitability we will need information about service provision. This might include the available resources to provide services (such as telecommunications access in remote areas of Australia), contexts (such as geographical or population demographics including culture and language), and organisational factors such as service delivery and set-up (for example, inter-disciplinary teams or sole-practitioner models).


file-20230502-1574-jc5i1v.jpg

Evidence sources in a real-world context need to take in quantitative and qualitative recommendations. Shutterstock



Evidence-based recommendations in the real world​

An example of how these three important components can inform evidence-based practice can be found in the recently released guidelines for supporting children with autism and their families.

Autism is the largest disability category for NDIS, with around one in three active NDIS participants receiving funding for the condition. The fresh guidelines include information from extensive systematic reviews, incorporate qualitative and quantitative research studies, and the voices of autistic people, families and service providers. The surrounding context of service provision – how and where supports are delivered in the real world – was described and applied to recommendations.

This broader view and application of evidence-based practice is more appropriate for the supports the NDIA provides funding for. However, these types of evidence sources are currently limited. We do not have them available for all disability groups or age groups.

Investments will need to be made to focus on developing these evidence sources and ensuring the government stays true to its commitment of working together with people with disability and the sector to provide “choice and control” and effective support.

This article was first published on The Conversation, and was written by Kobie Boshoff, Senior lecturer, Occupational Therapy, University of South Australia
As a parent of a young man who has a disability I believe NDIS need to actually be interviewing the families and clients more to get a personal and upfront view of the problems we all face each day. Unfortunately the research can only give answers about those particular clients because every person is an individual and no one has the same issues. Maybe Mr Shorten needs to come and experience our lives before he goes on record of what he thinks our child's needs are.
 
Criteria for eligibility needs to also be reflected in the form of a means test. I know of a couple both in very well paid jobs and their only child, a 4 yo has been pigeonholed on the Autism spectrum and has a $35k pa package. This country has a proportionally high number of children categorised on the Autism spectrum when compared to the rest of the developed world. On the Autism spectrum appears in some cases to be the category a 'specialist' will place a kid to satisfy parents that justify their child's bad behaviour. Basically their poor parenting skills is the reason for their kids ADHD.
 
Criteria for eligibility needs to also be reflected in the form of a means test. I know of a couple both in very well paid jobs and their only child, a 4 yo has been pigeonholed on the Autism spectrum and has a $35k pa package. This country has a proportionally high number of children categorised on the Autism spectrum when compared to the rest of the developed world. On the Autism spectrum appears in some cases to be the category a 'specialist' will place a kid to satisfy parents that justify their child's bad behaviour. Basically their poor parenting skills is the reason for their kids ADHD.
Same - although I doubt it was poor parenting - but we used to have children with all abilities and characteristics - now we need to label them and make them feel they are "not good enough". If there is a medical reason they cannot function, then for sure we should offer support, but throughout history there have been many with certain disabilities who have shown us they had real abilities in specific directions.
 

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