Changes to the Medicare Benefits Schedule will benefit children and young people with complex neurodevelopmental disorders, write Elizabeth Elliott, Marcel Zimmet and Julie Flanagan.

On 1 March 2023, a raft of significant changes were made to the Medicare Benefits Schedule (MBS) to benefit children and young people with complex neurodevelopmental disorders (items 135 and 289) or eligible disabilities (items 137 and 139).

Many such conditions result in developmental delay, neurodevelopmental impairment, or disability, with significant impacts on families and health services.

Parents report that diagnosis is often delayed and that access to affordable assessment and treatment is often challenging.

This reflects that the MBS has not been updated for some years. For example, item 135 was introduced in 2008 and has not been updated since to reflect changes in the definitions and understanding of complex developmental disorders and the increased recognition of autism spectrum and other disorders.

Also, prior to the recent MBS changes, which have expanded the number of eligible disabilities, many families with children with complex disabilities were unable to access Medicare-supported assessment or therapy from doctors or allied health professionals due to cost barriers.

This limited many from receiving the specialised, wrap-around supports they required to achieve the best possible outcomes for their complex needs.

What are complex neurodevelopmental disorders?

Complex neurodevelopmental disorders are a group of disorders with onset in childhood and are associated with clinically significant impairment in at least two different functional domains.

Children may present with a range of developmental, learning and behavioural problems. These are lifelong disorders with ongoing impacts.

Specific functional impairments include, but are not limited to problems in the domains of:

  • adaptive function — self-care, social skills and social communication;
  • cognition — or thinking skills;
  • attention, hyperactivity, and impulse control;
  • social and emotional development;
  • language and speech skills; and
  • executive function — the capacity to plan and execute complicated tasks and control impulsive behaviour. 

As the term implies, these complex disorders may significantly delay development as well as physical health and wellbeing and require a multidisciplinary approach to assessment and therapy. Take for example a child with a genetic condition such as Down syndrome — with severe language disorder, intellectual disability, problems with motor skills and a congenital heart defect.

What are eligible disabilities?

The schedule provides a list of eligible disabilities or specific diagnoses, which include sensory problems such as hearing and vision impairment, chromosomal disorders such as Fragile X syndrome, and conditions with multiple causes such as cerebral palsy.

What MBS items have been amended for doctors?

Item 135 (for consultant paediatricians) and item 289 (for consultant psychiatrists) have been updated. These allow for assessment of patients with complex neurodevelopmental disorders and formulation of treatment and management plans.

Specifically, the term “pervasive developmental disorders” has been replaced in the MBS by “complex neurodevelopmental disorders”, and the upper age for eligible patients has been raised from people under 13 years of age to people under 25 years of age.

This acknowledges that presentation may be delayed and that different assessments are relevant at different ages and developmental stages.

For MBS purposes, eligibility for access to this item is based on the patients’ functional impairment and complexity rather than diagnosis alone.

This takes the focus away from specific conditions such as autism spectrum disorder and acknowledges the many different conditions that fall under the term complex neurodevelopmental disorders.

Additional changes to know about

Item numbers 137 (for specialist and consultant physicians) and 139 (for GPs) have been amended so that children and young people up to the age of 25 years are now eligible for the services.

Also, the list of eligible disabilities has been expanded to include a chromosomal disorder (22q deletion syndrome), a genetic metabolic syndrome (Lesch–Nyhan syndrome), and fetal alcohol spectrum disorder (FASD), which is caused by prenatal alcohol exposure.

As with the previous schedule, doctors should note that a pre-requisite consultation may be required before using these item numbers.

For example, paediatricians must have completed a consultation (item 110) to access item 135 and to enable allied health referral. Item numbers are also available for case conferencing.

Benefits to patients

Changes to MBS items relating to complex neurodevelopmental disorders and eligible disabilities (135, 289, 137, 139) will benefit many patients.

The age range of children and young people who can be assessed and managed by paediatricians, psychiatrists, physicians, and GPs has been increased for all items. This allows paediatricians using item 135, for example, to complete an assessment or management plan if a child turns 18 years during the assessment. It acknowledges that many children present late or require assessment beyond the age of 13 years (the upper age limit in the previous schedule).

All the items are associated with an equivalent telehealth item, which will increase access to specialised care for children living where services are absent or difficult to access, including in remote and rural settings. Telehealth can be a useful component of a neurodevelopmental assessment, feedback and follow-up, and is time-saving for neurodevelopmental services with long wait lists.

We welcome the increase in the number of specified disabilities, including FASD. FASD is caused by prenatal exposure to alcohol, which is both a teratogen and neurotoxin. It is characterised by severe neurodevelopmental impairment with or without birth defects and is thought to be the most common preventable neurodevelopmental disorder. However, diagnosis is often delayed.

Changes to the MBS schedule will increase access to early diagnosis and treatment, thorough specialist and multidisciplinary assessment, and facilitate better health and social outcomes for children and families. This approach is vital for early intervention. Changes relevant to allied health professionals increase the range and number of services available.

What changes apply to allied health professionals?

In addition to changes to item numbers pertaining to medical practitioners, several changes have been made to improve access to assessment or treatment by allied health professionals. This acknowledges the complexity and chronicity of many neurodevelopmental disabilities, the ongoing needs of young people, and the value of a multidisciplinary approach.

Multidisciplinary assessment and management planning

Doctors can now refer to a broader range of allied health professionals for assessments. Audiologists, orthoptists, optometrists and physiotherapists have been added to the list of eligible practitioners, which also includes clinical psychologists, speech pathologists and occupational therapists.

The maximum number of assessments allowed by allied health professionals has been increased from four to eight, including sessions to contribute to treatment and management plans. This is a major improvement as the complexity of these disorders requires multiple and time-consuming assessments and treatments over time by a range of clinicians.   

Furthermore, allied health professionals can refer to each other, which enables collaboration, communication, and coordination of care and avoids duplication of services. Case conference attendance can be billed under time-tiered MBS Items 82001, 82002 and 82003. GPs can refer people with conditions listed under eligible disabilities in the MBS item 139 for these assessments. The existing provision for up to 20 allied therapy sessions remains; however, treatment can now continue until the individual is 25 years old.

One of the authors, Julie Flannagan from the National Organisation for Fetal Alcohol Spectrum Disorder (NOFASD) Australia, said that feedback on the MBS changes has been positive.

“Families of children with FASD have described the changes as a ‘gamechanger’ that will allow easier access to FASD-informed services at significant less cost to families and will improve life outcomes for children,” she said.

The importance of these changes

Early and accurate diagnosis and use of evidence-based therapies are crucial to improve the health, wellbeing and life chances of children born with complex and disabling neurodevelopmental disorders (here and here).

Timing of diagnosis is crucial because early intervention improves both child and adult outcomes. The young brain is described as “plastic” and can adapt in response to early intervention. But access to skilled assessment and diagnosis is often delayed, particularly for vulnerable groups.

Although changes to the MBS will improve services for developmentally vulnerable children, they will not address the unmet demand for services, particularly for vulnerable groups in rural and remote regions, and must be accompanied by strategies to train and fund multidisciplinary teams in order to increase their capacity nationwide.

Elizabeth Elliott is a Distinguished Professor of Paediatrics and Child Health at the University of Sydney and Head of the FASD NSW Assessment Service at the Sydney Children’s Hospitals Network. 

Marcel Zimmet is Senior Developmental Paediatrician at Royal Far West.

Julie Flanagan is the National Projects and Communications Manager for the National Organisation for Fetal Alcohol Spectrum Disorder (NOFASD) Australia. 

The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated. 

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