The NDIS Needs to Stop Treating Lifelong Intellectual Disability Like a Condition That Can Be Fixed

Over recent years, many participants, families and allied health providers have noticed a concerning trend within the National Disability Insurance Scheme (NDIS).

The growing expectation that a person with significant intellectual disability will eventually require less therapy because they are expected to ‘get better’ is inconsistent with contemporary clinical evidence, established disability practice, and the legislative intent of the National Disability Insurance Scheme (NDIS).”

This approach raises serious questions about whether some planning decisions are being made with a sufficient understanding of intellectual disability, current clinical evidence, and the legislative intent of the NDIS.

This issue is not about whether participants should demonstrate outcomes. They should. The issue is that outcomes for a person with lifelong intellectual disability are often measured by maintaining functional capacity, preventing regression, improving participation and developing new adaptive skills within the limitations of their disability, not by eliminating the disability itself.

For many participants, intellectual disability is a lifelong condition. Therapy does not remove the disability. It helps the person function at their highest possible level, maintain skills, prevent decline, increase independence where possible, and improve quality of life.

Confusing therapeutic progress with a cure is not only clinically incorrect, it risks undermining the very purpose of the NDIS.

Intellectual Disability Is a Lifelong Disability

Intellectual disability is characterised by significant limitations in intellectual functioning and adaptive behaviour that originate during the developmental period.

These limitations affect areas such as:

• Communication
• Learning
• Problem solving
• Memory
• Social understanding
• Self-care
• Daily living skills
• Community participation

While individuals can learn new skills throughout their lives, intellectual disability itself does not disappear.

This is well established within international clinical literature and is reflected in Australia’s diagnostic and disability frameworks.

No recognised clinical guideline suggests that therapy can eliminate a significant intellectual disability.

What Therapy Is Actually Designed to Do

The purpose of therapy under the NDIS is often misunderstood.

Therapeutic supports are not provided because they are expected to cure disability.

Instead, they are designed to help participants:

• Build functional capacity.
• Maintain existing skills.
• Slow or prevent deterioration.
• Increase independence where achievable.
• Develop practical strategies for daily living.
• Improve emotional regulation.
• Improve communication.
• Reduce behaviours of concern.
• Improve participation within home, school, work and community environments.

For participants with significant intellectual disability, success is frequently measured by maintaining function rather than achieving dramatic improvements.

For example:

A participant who can continue preparing a simple meal independently after two years of therapy has achieved an important outcome.

A participant who continues regulating their emotions without requiring crisis intervention demonstrates successful therapy.

A participant who maintains safe community access has achieved an important functional outcome.

These are genuine improvements in daily life, even though the underlying disability remains.

Maintenance Is Not Failure

One of the most concerning misconceptions appears to be the belief that if therapy has been provided for several years, the participant should now require less therapy.

This assumes therapy follows a short-term rehabilitation model.

For many NDIS participants, this is simply not how disability works.

There is an important difference between rehabilitation and disability support.

Rehabilitation often follows an injury or illness where recovery is expected.

Intellectual disability is a permanent neurodevelopmental disability.

The role of therapy is ongoing.

Without continued intervention, many participants experience:

• Loss of previously acquired skills.
• Reduced independence.
• Increased reliance on informal supports.
• Increased reliance on paid supports.
• Increased behavioural challenges.
• Reduced community participation.
• Increased mental health concerns.
• Greater long-term costs.

Maintaining function is often the therapeutic success.

The False Assumption That “They’ve Improved”

Another common planning assumption appears to be:

“They’ve improved, therefore they need less therapy.”

This misunderstands why improvement occurred in the first place.

In many cases, improvements have occurred precisely because therapy has been consistently delivered.

Removing the therapy that created those gains creates a significant risk that those gains will be lost.

This would be similar to saying:

A participant has successfully managed their communication because they have been seeing a speech pathologist for three years.

Therefore they no longer require speech pathology.

The conclusion ignores the role the therapy played in achieving the current level of functioning.

The same principle applies across counselling, psychology, occupational therapy, physiotherapy, behaviour support and other evidence-based therapeutic interventions.

Capacity Building Does Not Mean Disability Disappears

The NDIS funds many therapies through Capacity Building supports.

Unfortunately, the term “capacity building” can sometimes be misunderstood.

Building capacity does not mean removing disability.

Capacity building means assisting participants to maximise their functional capacity within the limitations created by their disability.

For someone with significant intellectual disability, this may involve learning one new daily living skill over several months.

It may involve improving emotional regulation enough to participate in school.

It may involve reducing aggressive incidents through Behaviour Support.

It may involve maintaining communication skills already developed.

These are significant achievements.

They do not mean the disability has resolved.

Functional Gains Can Plateau

Clinical research consistently demonstrates that many lifelong disabilities eventually reach a plateau where participants maintain function rather than continue making substantial gains.

This is entirely expected.

Plateauing does not indicate therapy has stopped working.

It often demonstrates that therapy is successfully maintaining function.

Without continued intervention, regression may occur.

This is recognised across numerous areas of healthcare.

No clinician would argue that because a person’s epilepsy has remained stable for several years, medication should automatically cease.

Likewise, ongoing therapy may remain clinically necessary even when progress appears slower than during the initial intervention period.

The NDIS Act Does Not Require Participants to Be “Fixed”

The NDIS was never designed to cure disability.

Its purpose is to support people with permanent and significant disability to maximise independence and social and economic participation.

The legislation recognises that disabilities are permanent.

Funding decisions should therefore consider what supports are reasonable and necessary to assist participants to pursue their goals and improve or maintain functional capacity.

Maintaining function is a legitimate therapeutic outcome.

Preventing deterioration is a legitimate therapeutic outcome.

Supporting ongoing participation is a legitimate therapeutic outcome.

None of these require the disability itself to improve.

Reducing Therapy Can Increase Costs

Reducing therapy budgets may appear to create immediate savings.

However, it can create much larger costs over time.

Without adequate therapeutic support, participants may require:

• Increased support worker hours.
• More frequent crisis intervention.
• Additional Behaviour Support.
• Emergency accommodation.
• Increased hospital presentations.
• More intensive mental health intervention.
• Greater reliance on family carers.
• Earlier entry into supported accommodation.

Early, ongoing therapy frequently reduces these downstream costs by maintaining functional ability and preventing avoidable deterioration.

Investing in therapy is often both clinically appropriate and economically sensible.

Every Participant Is Different

It is also important to remember that participants with the same diagnosis may have vastly different support needs.

Planning decisions should never be based on assumptions attached to a diagnosis.

They should be based on contemporary evidence demonstrating:

• Current functional capacity.
• Disability-related barriers.
• Goals.
• Clinical recommendations.
• Documented outcomes.
• Risks if supports are reduced.

Blanket assumptions that participants should progressively require less therapy simply because time has passed are inconsistent with person-centred planning.

Planning Should Reflect Clinical Evidence

NDIS planners play an important role in balancing participant needs with responsible stewardship of public funding.

However, planning decisions should always be informed by contemporary clinical evidence rather than assumptions about lifelong disability.

When qualified treating professionals consistently recommend ongoing therapy because it remains clinically necessary to maintain functional capacity and prevent regression, those recommendations deserve careful consideration.

Therapeutic recommendations should be assessed on the participant’s individual circumstances, evidence of functional benefit, and ongoing disability-related needs.

Supporting People to Live Their Best Lives

People with significant intellectual disability deserve access to supports that recognise the reality of their disability while focusing on what they can achieve.

Therapy is not about curing intellectual disability.

It is about helping people communicate more effectively, participate more fully, become as independent as possible, maintain important life skills, strengthen relationships, regulate emotions, and live safer, richer and more meaningful lives.

Expecting therapy to eliminate a lifelong disability misunderstands both the purpose of therapy and the nature of intellectual disability.

The measure of success should never be whether the disability has disappeared.

It should be whether the participant is living a better life than they would without those supports.

That is what the NDIS was created to achieve, and planning decisions should continue to reflect that principle.

Why Some Planning Decisions May Be Getting It Wrong

It is important to acknowledge that NDIS planners have a difficult role. They are responsible for making funding decisions that balance the individual needs of participants with the responsible use of public funds. That responsibility is significant and should be respected.

However, concerns arise when planning decisions appear to be based on assumptions that are inconsistent with contemporary clinical evidence and the lived reality of lifelong disability.

Increasingly, participants and providers report therapeutic support budgets being reduced because a participant has received therapy for several years or has demonstrated positive outcomes. This reasoning appears to assume that ongoing therapy is no longer required because the participant has “improved”.

For a person with significant intellectual disability, this assumption is often fundamentally flawed.

The progress achieved by many participants is not evidence that therapy is no longer needed. It is often evidence that therapy has been effective.

A participant who has learned to communicate more effectively, regulate their emotions, safely participate in their community or maintain daily living skills has often achieved these outcomes through years of consistent therapeutic intervention. Removing or substantially reducing those supports simply because progress has been made ignores the very role therapy played in achieving those outcomes.

There is also an important distinction between improvement and maintenance.

Many participants with lifelong intellectual disability reach a point where therapy focuses on maintaining skills, preventing regression and adapting to new life stages rather than achieving continuous measurable gains. This is entirely consistent with accepted clinical practice and should not be interpreted as a failure of therapy or as evidence that therapy is no longer required.

Planning decisions should also recognise the value of longitudinal clinical knowledge. Treating clinicians who have worked with a participant over many months or years are often best placed to assess functional capacity, identify subtle changes, evaluate risks and determine what level of therapeutic support remains clinically necessary.

While functional assessments, planning tools and funding frameworks all have an important place within the NDIS, they should complement, not replace, the professional judgement of appropriately qualified treating practitioners.

The NDIS was established to support people with permanent and significant disability to live ordinary lives with the right supports. For participants with significant intellectual disability, success is rarely measured by whether the disability has disappeared. It is measured by whether they can continue participating in everyday life, maintain the skills they have worked so hard to develop and enjoy the greatest level of independence possible.

Planning decisions should reflect that reality.

When therapy enables a participant to maintain their functional capacity, avoid regression, reduce their reliance on more intensive supports and participate more fully in their community, it is achieving exactly what the NDIS was designed to fund.

Rather than asking, “Has this person improved enough to reduce therapy?”, the more appropriate question is, “What evidence demonstrates that reducing therapy will allow this person to maintain their functional capacity and continue achieving their goals?”

For people with lifelong intellectual disability, that distinction is not merely academic. It can determine whether they continue to thrive or begin to lose the very skills that years of therapeutic support have helped them achieve.

References

Australian Government. National Disability Insurance Scheme Act 2013 (Cth).

Available at: https://www.legislation.gov.au/C2013A00020

The NDIS Act establishes that the Scheme exists to support people with permanent and significant disability by providing reasonable and necessary supports that assist participants to pursue their goals, maximise independence, increase social and economic participation, and develop and maintain functional capacity. The Act does not suggest that permanent disabilities are expected to resolve through therapy.

Australian Government. National Disability Insurance Scheme (Supports for Participants) Rules 2013.

Available at: https://www.legislation.gov.au/F2013L01063

The Supports Rules reinforce that funded supports should be based on the participant’s individual disability-related needs and should represent value for money while supporting their functional capacity and participation.

National Disability Insurance Agency. What is reasonable and necessary?

Available at: https://www.ndis.gov.au/participants/creating-plan/understanding-plan-meeting/what-reasonable-and-necessary

The NDIA explains that reasonable and necessary supports are determined according to the participant’s individual circumstances, evidence and disability-related support needs, rather than generic assumptions about diagnosis or expected improvement.

National Disability Insurance Agency. What are therapy supports?

Available at: https://www.ndis.gov.au/participants/using-your-funding/other-types-support/what-are-therapy-supports

The NDIA states that therapy supports are intended to build or maintain functional capacity, improve participation and help participants achieve their goals. Therapy funding is based on functional outcomes rather than curing disability.

American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR). American Psychiatric Association, Washington DC, 2022.

The DSM-5-TR defines Intellectual Disability (Intellectual Developmental Disorder) as a neurodevelopmental disorder characterised by significant limitations in intellectual functioning and adaptive functioning that originate during the developmental period. It is recognised as a lifelong condition.

American Association on Intellectual and Developmental Disabilities (AAIDD). Intellectual Disability: Definition, Diagnosis, Classification and Systems of Supports. 12th Edition. AAIDD, Washington DC, 2021.

The AAIDD explains that intellectual disability is lifelong and that appropriate supports improve functioning, participation and quality of life. The purpose of supports is to maximise a person’s capabilities, not eliminate their disability.

World Health Organization. International Classification of Functioning, Disability and Health (ICF). World Health Organization, Geneva, 2001.

The ICF provides the internationally recognised framework for understanding disability. It focuses on functioning, participation and environmental supports rather than curing disability, recognising that disability results from the interaction between a person’s health condition and their environment.

United Nations. Convention on the Rights of Persons with Disabilities (CRPD). United Nations, 2006.

Australia is a signatory to the Convention. The CRPD recognises the rights of people with disability to receive the supports necessary to participate fully in society and achieve the highest attainable level of independence. It does not promote the expectation that permanent disabilities should be resolved before ongoing supports are provided.

National Institute for Health and Care Excellence (NICE). Learning disabilities and behaviour that challenges: service design and delivery (NG93).

Available at: https://www.nice.org.uk/guidance/ng93

NICE recognises that people with intellectual disability often require ongoing multidisciplinary therapeutic supports throughout their lives to maintain function, reduce behaviours of concern, improve participation and support independence.