BDSRA Australia Media Release - 13 May 2026
Federal Budget highlights urgent need for investment in childhood dementia clinics and research
Batten Disease Support and Research Association (BDSRA) Australia has welcomed growing national investment in dementia, chronic disease prevention and health reform in the 2026-27 Federal Budget, while warning that children living with dementia continue to fall through major gaps in Australia’s health and disability systems.
Batten disease is a rare and fatal neurodegenerative disorder that causes progressive loss of vision, mobility, speech, cognition and independence. It is the most common form of childhood dementia. There is currently no cure.
The Budget presents an opportunity for the Australian Government to build on growing momentum around childhood dementia and ensure children and families are not left behind within broader dementia, chronic disease and rare disease reform efforts.
Australian First: National Batten Clinics
The organisation is currently working with clinicians, hospitals and partners to establish Australia’s first coordinated national Batten disease clinic network, supported by philanthropic investment.
The clinics aim to bring together multidisciplinary care, improve coordination between states and services, support earlier intervention, strengthen research readiness, and reduce the burden currently placed on families to navigate fragmented systems alone.
“The clinics represented an important first step, but long-term sustainability would require government partnership and investment. BDSRA Australia looks forward to continuing conversations with all members of Parliament in order to establish these clinics, not just for Batten disease but all forms of childhood dementia.” BDSRA Australia President Priyanka Rai said.
The organisation notes recent investments aimed at strengthening prevention and chronic disease management, including the Australian Government’s new Chronic Conditions Prevention and Integrated Care Grants Program, which will invest $109.9 million over three years from 2026-27, with ongoing funding from 2029-30 to support prevention, integrated care and earlier intervention.
These investments represented an important shift towards more coordinated healthcare, but families living with rare and complex childhood neurodegenerative diseases continue to face major gaps in access, care coordination and system navigation.
The NDIS
BDSRA Australia also raises concerns about the ongoing impact of changes, funding cuts and tighter controls within the National Disability Insurance Scheme (NDIS), particularly for families living with rare and progressive neurological conditions.
The organisation said many Batten families already experience significant challenges navigating complex eligibility requirements, inconsistent planning decisions, limited understanding of rare disease within systems, and gaps between health, disability and social care services.
“Families affected by Batten disease often become the coordinators of care because the system itself is not designed around rare and complex childhood neurodegenerative conditions,” Ms Rai said.
“These clinics are about creating a more connected and coordinated model of care so families are not left navigating multiple systems, clinicians and services on their own.”
The growing national focus on childhood dementia and rare disease reform is encouraging, but families urgently needed practical action alongside awareness.
“We welcome the increasing national attention on childhood dementia and the growing recognition of the need for research, coordinated care and long-term system reform,” Ms Rai said.
“But awareness alone is not enough. Families need timely diagnosis, practical supports, coordinated care pathways and confidence that investment in research will continue to translate into better outcomes for children and families.”
Mr. Harry Partridge, founding and current Board member of BDSRA Australia, acknowledges the significant pressures many families continue to experience navigating the NDIS and broader support systems while caring for children with progressive neurological conditions.
“It’s positive to see the support that the NDIS has provided. And while for many families the NDIS has been transformative, we continue to hear concerns about increasing complexity, delays and uncertainty at a time when children’s conditions are rapidly progressing,” Mr Partridge said.
“When supports are fragmented, delayed or difficult to access, the burden inevitably shifts back onto families already managing around-the-clock care, financial pressure and profound emotional strain.”
BDSRA Australia said there remained a significant question around whether broader prevention and health reforms would be implemented in ways that were genuinely accessible and effective for vulnerable and underrepresented populations, including families affected by rare disease, disability and childhood dementia.
Without stronger investment in care coordination, navigation support, multidisciplinary clinics and research infrastructure, children with childhood dementia risk remaining invisible across mainstream health, disability and dementia policy frameworks.
We need access to real clinics and real support to provide tangible outcomes for our community. BDSRA Australia is calling on the Australian Government to:
1. Invest in sustainable nationally coordinated Batten disease, childhood dementia and rare disease clinics.
2. Support multidisciplinary care coordination and family navigation services 3. Strengthen rare disease data, clinical pathways and research infrastructure, and 4. Ensure childhood dementia is explicitly recognised within national dementia and disability policy frameworks.
Ms Rai said the economic and social cost of inaction was significant.
“When children with rare neurodegenerative diseases fall through the gaps, families experience enormous emotional, financial and psychosocial strain. Earlier diagnosis, coordinated care and investment in research are not only compassionate responses, they are smarter long-term health investments.”
“We’ve done the hard work in getting funding for real clinics established in Australia. Now we need the Government to help to ensure that the support these clinics can provide for the Batten community, and other childhood dementias, can be sustained.”
BDSRA Australia looks forward to continuing to work collaboratively with Governments, the Department of Health, Disability and Ageing, clinicians, researchers, disability advocates and the broader childhood dementia sector.
Let’s work together to ensure no child or family affected by these devastating conditions is left behind or forgotten.
ENDS
