Discrimination experienced by families of children with childhood dementia

childhood

dementia

INITIATIVE

Submission to the Disability Discrimination Act 1992

Review

Submitted by: Childhood Dementia Initiative

Date: 28 November 2025 (extension granted)

Contact: ie

childhood

dementia

INITIATIVE

Executive Summary

This submission represents the collective voices of families caring for children with childhood dementia conditions across Australia. This submission highlights the pervasive discrimination experienced by children with progressive neurodegenerative, life-limiting conditions and their families.

Key findings:

e The overwhelming majority of respondents reported their children experienced discrimination in education e Most families experienced discrimination in healthcare services

e Most families experienced discrimination accessing therapies or support services

e Nearly all respondents believe terminology in the Act requires modernisation

e Nearly all respondents support implementing a positive duty to prevent discrimination

Children with childhood dementia face unique challenges due to the progressive, neurodegenerative nature of their conditions, yet current protections under the Disability Discrimination Act 1992 (DDA) fail to adequately address their needs or prevent the systemic discrimination they face daily.

childhood

dementia

INITIATIVE

About childhood dementia

Childhood dementia encompasses over 100 rare genetic disorders that cause progressive cognitive and physical decline in children. These conditions are:

e Progressive and neurodegenerative - children’s abilities decline over time e — Life-limiting - many conditions have no cure and significantly shorten life expectancy e Highly complex - requiring specialist medical care and support

e Largely invisible - many people, including professionals, are unaware childhood dementia exists

The progressive nature of these conditions means that children’s needs change rapidly and unpredictably, requiring

flexible, responsive adjustments that current frameworks often fail to provide.

Symptoms

Just like adults with dementia, children with dementia experience memory loss, confusion, trouble concentrating, understanding, learning, and communicating. Children also experience personality changes, disturbed sleep, behaviour issues, and emotional problems like anxiety and fear.

Prevalence and prognosis

e A baby is born every 3 days in Australia with a childhood dementia disorder from which they will die. This is a similar number to cystic fibrosis. e One in every 2,900 babies is born with a childhood dementia condition. This is a similar number to cystic fibrosis. e All children with childhood dementia will die prematurely. 0 50% of children with childhood dementia die before their 10th birthday. 70% die before reaching adulthood. o Childhood dementia causes 91 deaths in Australia every year. This is a similar number to deaths from childhood cancer among children aged 0-14 years (92 per year). o Childhood dementia takes a life in Australia every 4 days.

childhood

dementia

INITIATIVE

How many kids in Australia are affected?

Over 100 babies are born every year, but because there are no treatments or cures and their lives are so short, around 90 die every year. So at any one time, we can expect around 1400 people in Australia to be affected, but this is a constantly moving cohort and there are thousands of families across the country grieving today.

Childhood Dementia Initiative

Childhood Dementia Initiative is a non-profit organisation dedicated to advancing research and improving care for all children with dementia. We drive change for the conditions that cause childhood dementia as a collective because it

compels efficiency and impact. We amplify family voices.

We’ve supported the building of comprehensive evidence on what’s happening for children and families affected by

dementia.

childhood

dementia

INITIATIVE

Part 1: Experiences of discrimination

1.1 Education discrimination

Education emerged as the most significant area of discrimination, with many families reporting experiences in this

sector.

Types of educational discrimination reported:

Inadequate adjustments or support o Schools failing to modify curriculum appropriately for changing needs o Insufficient teacher aide support o Lack of assistive technology provision Difficulty accessing appropriate educational settings o Mainstream schools suggesting specialist disability schools without attempting adjustments o Onerespondent stated: */ asked a mainstream school if they could accommodate her and they suggested a local disability school - their justification was we don’t have ramps or a disabled toilet with change table.” Staff lacking understanding of childhood dementia o Educators unfamiliar with degenerative conditions o Inability to adapt to rapidly changing needs o One parent noted: “schools are very afraid of disability and hold the idea that they don’t want to do too good of a job because then theyll get other kids with disability wanting to enrol” School enrolment challenges o Some respondents reported direct refusal, others noted schools made it clear they “wouldn’t accommodate” the child Exclusion from activities o Children unable to attend regular classrooms o Exclusion from excursions o Removal from activities like hydrotherapy

Barriers to reasonable adjustments

When schools failed to provide adjustments, families reported various reasons including:

• “Not in the school’s capacity”
• “Child’s needs are too complex”
• “No reason provided”
• “Too expensive/funding not available” One parent shared: “oftentheunderlyingissueisthatiftheyareseentosupportsomekidsothersmightwantto enrol-it’sbasedonfear.”

Recognition of discrimination

When asked if their educational experiences constituted discrimination, responses were mixed, with many families uncertain. This uncertainty reflects the systemic nature of discrimination that has become normalised, with one parent noting: “Notsureifit’sdiscriminationorjustlackofknowledge.”

1.2 Healthcare discrimination

Healthcare discrimination was reported by nearly all families, representing critical failures in essential services for children with progressive and degenerative conditions with complex medical needs.

Key healthcare barriers:

• Services not understanding childhood dementia o Healthcare professionals’ unaware childhood dementia exists o Lack of specialist knowledge across general healthcare

• Long waiting times for essential services o One family reported their daughter having 10-30 seizures daily while waiting until February for an

EEG

o Emergency department waits prolonged by lack of specialist knowledge

• Lack of specialist knowledge 6

o General practitioners unable to manage complex presentations o Emergency departments waiting for specialist advice, prolonging stays unnecessarily o One parent shared: “Wearequicklydischargedwithoutanswers…becauseshe’snon-verbalandher condition,theyputitdowntomaybethisishernewprogression.Sheisnevertreated.”

• Being refused services or treatment o Healthcare providers deeming children “too complex” o One respondent stated: “Beingdeniedhealthcareduetoterminalnatureofcondition” o Priority care units turning families away

• Geographic barriers o Services concentrated in metropolitan areas o Rural families forced to travel long distances

Recognition of healthcare discrimination

When asked if healthcare experiences constituted discrimination, most families were uncertain, though a substantial number confirmed discrimination.

One parent explained: “Mydaughteriscurrentlyhaving10-30seizuresaday…weareturnedawayfromprioritycare, GPandhospitalcauseshe’stoocomplex…theywaitforspecialistadvicefromMelbourneRCH…whichprolongsour stayunnecessarily.”

Adequacy of support: Most families reported healthcare providers “rarely” provide adequate support, with others reporting “sometimes,” and notably, no respondents felt providers “always” support children with childhood dementia.

1.3 Other Areas of Discrimination

• Access to therapies or support services o Services unable to accommodate complex needs o Families told to “try another program” o Access to allied health and respite services are removed children due to behavioural challenges – one family gave an example of hydrotherapy service being denied to their child due to behavioural changes

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• Public places o Physical accessibility barriers in rural areas o Lack of adult-sized change tables in bathrooms and restrooms o Age-inappropriate signage excluding children from developmentally appropriate spaces o One parent shared: “mentallyourdaughterfunctionsasatoddler/preschooler.Thesearethe activitiessheenjoysparticipatingin.Manypeopletellmethatsheistoooldtobeintheareathatis mentallyappropriateforherorpointoutthesignthatsays5andunder.”

• Transport o Airlines damaging essential wheelchair equipment o Public transport unable to accommodate complex needs

• Community activities o No community programmes available for children with high support needs o Lack of programmes for children with complex needs

Part 2: Recommendations for legislative reform

2.1 Updating the definition of disability

The current DDA definition uses deficit-based language including “malfunction,” “malformation,” “disfigurement” and “disturbed behaviour” when defining disability. This language:

• Reinforces medical model perspectives that locate disability “within” the person

• Fails to recognise how society creates barriers for people with disability, specifically progressive neurodegenerative conditions including childhood dementia

• Is outdated and disrespectful to current understandings of disability, and excludes children and young people with childhood dementia

Specific concerns for childhood dementia

One respondent noted: “thereneedstobeacknowledgementofthefluctuatinglevelsoffunctioningoftheparticipant andtheabilitytobedisabledbytheenvironment.”

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Children with childhood dementia face unique definitional challenges:

• Progressive decline means functioning changes over time
• Fluctuating presentation od children and young people with dementia means needs vary day-to-day
• The progressive neurodegenerative nature of childhood dementia is not captured in static definitions
• Palliative trajectory of childhood dementia intersects with disability but is often treated separately

Recommendations

Recommendation 1: Amend the definition of disability in the DDA to:

• Remove deficit-based language (“malfunction,” “malformation,” “disturbed behaviour”)
• Adopt social model terminology recognising how barriers create disability
• Explicitly include progressive and neurodegenerative conditions
• Recognise fluctuating functioning levels for childhood dementia
• Acknowledge that medical conditions and disability are not mutually exclusive (as one parent stated: “kids withchildhooddementiacanhavealifelimitingconditionbutstillhavelifetolive”

Recommendation 2: Ensure the definition captures:

• Childhood dementia conditions where functioning declines over time
• Episodic or fluctuating disabilities
• Life-limiting conditions that still require reasonable adjustments and protection from discrimination 2.2 Implementing a positive duty

The current DDA operates reactively - discrimination must occur before action can be taken. For children and young people with childhood dementia, this means:

• Families repeatedly advocating for basic adjustments for their children and young people with childhood dementia

• Children with childhood dementia are excluded from services while complaints are processed 9

• Families experience trauma from repeated experiences of discrimination
• Families being told repeatedly that their child’s needs are “too complex” or “too hard” Benefits of positive duty

A positive duty would require organisations to:

• Proactively identify and eliminate barriers

• Plan for inclusive practices before children and young people with childhood dementia enrol or access services

• Develop capability to support children and young people with childhood dementia to cater for their complex and changing needs

• Reduce burden on families to continually advocate One parent noted: “Ithinkit’simportanttoalsogivepeopletheopportunitytodotherightthing,ratherthanpre emptivelyassumingtheywon’t”– this suggests the benefits of positive duty could provide clear expectations and support for children and young people with childhood dementia.

Recommendations

Recommendation 3: Implement a positive duty requiring organisations to take reasonable and proportionate measures to eliminate discrimination for children and young people with dementia, including:

• In education: Proactive planning for inclusive education, staff training on childhood dementia conditions, development of flexible adjustment protocols

• In healthcare: Specialist training programmes, complex care pathways, emergency department protocols for children with childhood dementia, recognising with their complex needs

• In service provision: Accessibility audits, staff capability development, consultation processes with families impacted by childhood dementia

Recommendation 4: Ensure positive duty requirements include:

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• Mandatory consultation with people with progressive disability and their families, specifically childhood dementia

• Regular review and updating of adjustments for children and young people with dementia as needs change

• Accountability mechanisms for services and providers with meaningful consequences

• Support and resources about childhood dementia for organisations to build capability 2.3 Consultation requirements

Current gaps

Families impacted by childhood dementia are often excluded from decision-making about adjustments:

• Schools determine a child is “too complex” without family input

• Healthcare providers make assumptions about care for children and young people with dementia without consulting families

• Services refuse support for children and young people with dementia without discussing alternative approaches

One parent’s experience demonstrates this: “Mydaughter’sneedshavebeendescribedastoohard…oftentoldtotry anotherprogramorthattheycan’tmeetherneeds”*- suggesting decisions made without genuine consultation.

Importance of family knowledge

Families of children with childhood dementia possess critical knowledge:

• Understanding of fluctuating needs and triggers for their child/young person with childhood dementia
• Experience managing complex medical requirements
• Insight into what adjustments have previously worked for their child/young person with childhood dementia
• Ability to identify practical solutions for their child/young person with childhood dementia 11

Recommendations

Recommendation 5: Amend the DDA to require mandatory consultation with people with progressive disability, specifically childhood dementia and their families/representatives) before:

• Refusing reasonable adjustments

• Making claims of unjustifiable hardship

• Determining a person cannot meet inherent requirements

• Excluding a person from services Recommendation 6: Establish consultation standards that require:

• Timely engagement with families impacted by childhood dementia early in decision-making processes

• Genuine consideration of family input and expertise

• Documentation of consultation with families impacted by childhood dementia and how input was considered

• Opportunities for families impacted by childhood dementia to propose alternative adjustments 2.4 Addressing progressive and degenerative conditions

Families report multiple specific challenges related to childhood dementia requiring consideration.

Unique challenges identified

Families identified challenges specific to progressive conditions, specifically childhood dementia:

• “Changing needs over time”

• “Rapidly changing needs” – families report change occurs “quite rapidly compared to how quickly services can be adjusted”

• “Fluctuating function”

• “Planning for regressive conditions”

• “Recognising degenerative nature of conditions”

• “Regression and behavioural challenges”

• “Palliative care access” 12

One parent emphasised: “It’sahiddendisabilitythatchangesovertime”

Current framework inadequacies

The DDA framework does not adequately address:

• Need for regular review and modification of adjustments
• Intersection between disability support and palliative care
• Planning for loss of abilities rather than skill development
• Psychological impact of regression on children, families, and support systems

Recommendations

Recommendation 7: Amend the DDA and associated frameworks to explicitly recognise progressive and neurodegenerative conditions, specifically childhood dementia by:

• Requiring regular review of reasonable adjustments (at minimum annually, or more frequently as needs change)

• Establishing that adjustments must be modified as functioning changes

• Recognising that inability to meet previous functioning levels does not justify withdrawal of support

• Acknowledging intersection between disability services and palliative care Recommendation 8: Develop specific guidance for supporting children and young people with childhood dementia conditions addressing:

• Rapid adjustment review processes

• Psychological support for children with childhood dementia who experience loss of abilities

• Flexibility in educational programming to accommodate regression and main skills and capabilities

• Healthcare and education provider training on childhood dementia

• Palliative care access alongside disability support 13

2.5 Addressing the “unjustifiable hardship” defence

Current problems

Families’ experiences reveal organisations frequently claim adjustments for children and young people with dementia are too difficult without genuinely exploring options:

• Schools stating children with dementia conditions are “too complex”
• Services claiming adjustments are “not in capacity”
• Healthcare refusing treatment of children and young people with dementia due to complexity Parents report being told adjustments were “too expensive” while others noted schools wouldn’t even discuss options, with one stating the school “wouldn’t accommodate” without trying.

Lack of consultation

Current unjustifiable hardship claims often occur without:

• Genuine exploration of adjustment options
• Consultation with families about practical solutions
• Evidence of what was considered or attempted
• Documentation of decision-making process One parent noted: “Iaskedifamainstreamschooliftheycouldaccommodateherandtheyjustsuggestedalocal disabilityschoolinstead.”

Recommendations

Recommendation 9: Strengthen the unjustifiable hardship provision by:

• Requiring documented evidence of adjustments considered and attempted
• Mandating consultation with the child or young person with childhood dementia and their family before claiming hardship 14

• Establishing presumption that adjustments are reasonable unless proven otherwise

• Requiring consideration of external funding sources and support

• Shifting burden of proof to organisations claiming hardship rather rely on families Recommendation 10: Develop clear guidelines and examples of what constitutes unjustifiable hardship, particularly for:

• Childhood dementia conditions requiring changing adjustments

• Children with complex medical and progressive support needs

• Equitable service provision in regional and remote communities

• Intersection of disability support and healthcare needs 2.6 Physical accessibility requirements

Current gaps

Family insights highlighted significant physical accessibility barriers including:

• Lack of adult-sized change tables in public bathroom facilities
• Buildings exempt from accessibility requirements if built pre-1992
• Inadequate wheelchair access (one family reported airline breaking wheelchair)
• Rural areas with limited footpaths and step-access shops
• No accessible disability change-rooms with hoists One parent specifically requested: “itshouldincludeallpublicbuildingsby2030willbeaccessible.Government shouldprovidesupportandfundingforbuildingstodothis…includingchangingtablesandhoistsindisabilitychange rooms.”

Impact on children and young people with childhood dementia

Physical accessibility barriers particularly affect children with childhood dementia who:

• May require larger equipment as they grow while losing mobility 15

• Need hygiene facilities appropriate for their size and needs
• Experience reduced mobility while cognitive functioning may not match their physical age
• Live in regional or rural areas with limited infrastructure

Recommendations

Recommendation 11: Amend accessibility requirements to:

• Remove exemptions for buildings constructed before 1992

• Establish timeline (e.g., by 2030) for all public buildings to meet accessibility standards

• Mandate adult-sized change tables in public facilities

• Require disability change rooms with hoists in major public venues

• Provide government funding support for accessibility upgrades Recommendation 12: Develop specific standards for:

• Accessible facilities appropriate for children and young people with childhood dementia

• Rural and regional accessibility requirements

• Equipment standards for transport providers 2.7 Healthcare access and complex care

Systemic healthcare discrimination

Healthcare discrimination emerged as a critical issue affecting nearly all families impacted by childhood dementia, with problems:

• Emergency and acute care: o Children described as “too complex” for treatment o Prolonged waits while providers seek specialist advice o Discharge without diagnosis or treatment

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o One parent shared their daughter experiencing 10-30 daily seizures while waiting months for diagnostic testing

• Specialist access: o Long waiting times for essential services o Geographic barriers with services concentrated in metropolitan areas o Lack of complex care units in regional centres

• Treatment refusal: o Healthcare denied due to “terminal nature of condition” o Assumptions about quality-of-life informing treatment decisions o Non-verbal children having symptoms attributed to “progression” rather than investigated

One parent stated: “Wearequicklydischargedwithoutanswers…becauseshe’snon-verbalandhercondition,they putitdowntomaybethisishernewprogression.Sheisnevertreated.”

Recommendations

Recommendation 13: Strengthen healthcare discrimination protections by:

• Prohibiting refusal of treatment based solely on life-limiting prognosis

• Requiring investigation and treatment of acute symptoms regardless of underlying childhood dementia condition

• Mandating reasonable adjustments in healthcare settings for children and young people impacted by childhood dementia and their families

• Establishing clear pathways for complex care presentations including childhood dementia Recommendation 14: Establish specialist infrastructure through the establishment of a National Childhood Dementia Unit (NCDU) including:

• Complex care units in each state for children with multiple and changing needs, including childhood dementia

• Emergency department protocols for childhood dementia

• Regional specialist services reducing need for metropolitan travel 17

• Telehealth support for regional and rural families Recommendation 15: Require healthcare provider training on:

• Childhood dementia and progressive neurodegenerative conditions

• Communication with families impacted by childhood dementia

• Avoiding assumptions about quality of life

• Intersection of palliative and disability frameworks 2.8 Awareness and understanding

Invisible disability

Multiple families emphasised that childhood dementia remains largely unknown:

• “Disbeliefthatchildhooddementiaexists”
• “Manypeople,includingprofessionals,stilldon’tknowitexists”
• “Indirect[discrimination]mainlyduetoignoranceorlackofeducationarounddisability” This lack of awareness contributes to discrimination across all sectors, with professionals and services unable to provide appropriate support because they are unaware of the conditions.

Recommendations

Recommendation 16: Develop national awareness initiatives addressing:

• Professional education programmes across education, healthcare, and community services
• Public awareness campaigns about childhood dementia
• Resource development for schools and services
• Integration of progressive disability content in professional training curricula Recommendation 17: Establish specialist support services including:

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• Childhood dementia advisory services for schools and healthcare providers
• Regional coordination of support across sectors
• Peer support networks for families
• Information and resource hubs 2.9 Community inclusion and social participation

Barriers to community life

Families impacted by childhood dementia reported discrimination in community activities, with particular challenges:

• No community programmes available for children and young people with childhood dementia

• Age-based restrictions excluding children with dementia conditions from developmentally appropriate activities

• Lack of understanding of childhood dementia from other community members One parent described: “mentallyourdaughterfunctionsasatoddler/preschooler.Thesearetheactivitiessheenjoys participatingin.Manypeopletellmethatsheistoooldtobeintheareathatismentallyappropriateforherorpoint outthesignthatsays5andunder.”

Another shared: *“oftentoldtotryanotherprogramorthattheycan’tmeetherneed”*regarding community services.

Recommendations

Recommendation 18: Promote inclusive community participation for children and young people impacted by dementia and their families by:

• Prohibiting age-based exclusions where developmental level is appropriate

• Requiring community programmes to consider reasonable adjustments before refusing participation

• Supporting development of inclusive programmes for children and young people with childhood dementia

• Funding specialist community programmes and activities for children and young people with dementia and their families 19

Recommendation 19: Support social inclusion through:

• Peer education programmes reducing stigma and misunderstanding of childhood dementia
• Community awareness about childhood dementia
• Accessible public spaces and facilities for families impacted by childhood dementia
• Accessible and affordable transport options for families impacted by childhood dementia, some with complex equipment needs

Part 3: Implementation and accountability

3.1 Enforcement and remedies

The current DDA relies heavily on individual complaints, placing burden on families impacted by childhood dementia already managing:

• Complex medical needs
• Educational advocacy
• Service navigation
• Multiple appointments and therapies
• Emotional toll of progressive conditions For families of children with childhood dementia, this burden is unsustainable. One parent’s description of their healthcare experience demonstrates the emotional toll: describing their daughter having seizures daily, being discharged without answers, turned away from priority care, and “never treated” - all while managing the progressive nature of the condition.

Recommendations

Recommendation 20: Strengthen enforcement mechanisms by:

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• Proactive monitoring and compliance audits rather than relying solely on complaints

• Empowering the Australian Human Rights Commission to investigate systemic discrimination of children with dementia conditions and their families

• Establishing specialist disability discrimination commissioners that recognise and understand progressive and neurodegenerative condition including childhood dementia

• Creating accessible complaint pathways for children and families impacted by childhood dementia Recommendation 21: Expand remedies to include:

• Systemic remedies addressing organisational practices

• Mandatory training and capability development in childhood dementia

• Regular progress reporting and monitoring 3.2 Funding and Resources

Discrimination often occurs from lack of resources, capability, and understanding. However, resource constraints cannot justify discrimination.

Recommendations

Recommendation 22: Ensure adequate resourcing by:

• Increased disability support funding for children with dementia conditions, recognising their progressive and changing needs

• Capital funding for accessibility upgrades for children with dementia conditions

• Training and professional development funding for education and healthcare providers

• Specialist support services for progressive neurodegenerative conditions that cause dementia in children and young people

Recommendation 23: Clarify that:

• Funding constraints do not automatically constitute unjustifiable hardship 21

• Organisations must explore all potential external funding sources

• Government has responsibility to adequately fund reasonable adjustments for children and young people with dementia conditions

• Children and young people with dementia should not be denied education or services due to inadequate systemic funding

3.3 Monitoring and Review

Given the rapid changes and declines in children and young people with childhood dementia, regular review is essential.

Recommendations

Recommendation 24: Establish monitoring requirements including:

• Mandatory data collection on disability discrimination by all sectors providing support and care to children and young people with childhood dementia

• Regular review of DDA effectiveness in protecting children and young people with childhood dementia

• Reporting on reasonable adjustment provision in education and healthcare for children and young people with childhood dementia

• Consultation with childhood dementia community in ongoing policy development Recommendation 25: Require sector-specific childhood dementia action plans from:

• Education departments at state and federal levels

• Healthcare providers and facilities

• Transport providers

• Community service organisations

Conclusion

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Children and young people with childhood dementia conditions face pervasive discrimination across education, healthcare, community participation, and daily life. This discrimination stems from:

• Lack of awareness about childhood dementia
• Deficit-based understanding of disability
• Reactive rather than proactive frameworks
• Inadequate consultation with families
• Failure to recognise progressive conditions’ unique needs
• Insufficient accountability for discriminatory practices The current Disability Discrimination Act 1992, while groundbreaking when enacted, has not kept pace with understanding of disability nor adequately protected children with complex, progressive conditions.

Our research with families has demonstrated clear consensus:

• Nearly all families want updated, respectful terminology

• Nearly all families support positive duties to prevent discrimination

• All families impacted by childhood dementia believe family consultation is important or very important to reduce experiences of discrimination

• The overwhelming majority of children and young people with childhood dementia experienced educational discrimination

• Nearly all families impacted by childhood dementia experienced healthcare discrimination These families’ experiences demonstrate urgent need for reform. As one parent stated: “thereneedstobean acknowledgmentthatamedicalconditionandadisabilityarenotmutuallyexclusiveandkidswithchildhood dementiacanhavealifelimitingconditionbutstillhavelifetolive.”

We urge the review to adopt recommendations that will:

• Update definitions and terminology to reflect current understanding rather than deficit-based practices
• Implement positive duties requiring proactive elimination of discrimination
• Mandate meaningful consultation with families impacted by childhood dementia 23

• Recognise unique needs of childhood dementia conditions
• Strengthen enforcement and accountability of providers, systems
• Ensure adequate resourcing
• Promote awareness and understanding of childhood dementia, and that disability can be progressive Children and young people with childhood dementia deserve the same rights, opportunities, and protections as all children. This review presents a critical opportunity to ensure the DDA fulfils its promise of equality and inclusion for all people with disability, including those with progressive, degenerative conditions.

As another parent requested: “Pleasepushmakingbuildingsaccessibleandchangetables.Weneedspecialisedcare that’saccessibleandourkidsdeservegettingthesameleveloftreatmentasothers.”*

This is not asking for special treatment - it is asking for equitable treatment, dignity, and the opportunity for children and young people with childhood dementia to live full lives devoid of discrimination and exclusion.

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References

1. Elvidge KL, Christodoulou J, Farrar MA, et al. The collective burden of childhood dementia: a scoping review. Brain J Neurol. 2023;146(11):4446-4455. doi:10.1093/brain/awad242

2. Australian Government Department of Health, Disability and Ageing. National Dementia Action Plan 2024–2034.; 2024. https://www.health.gov.au/sites/default/files/2025-08/national-dementia-actionplan-2024 2034.pdf

3. Childhood Dementia Initiative: We don’t fit. Childhood Dementia Initiative. March 2023. https:// www.childhooddementia.org/news/we-dont-fit

4. Nous Group. National Childhood Dementia Unit (NCDU) Business Case.; 2025. https://www. childhooddementia.org/getasset/EU7IE2

5. Childhood Dementia Initiative. Family experiences of health systems in New South Wales. Published online

6. https://d1iap1m2kaw9nt.cloudfront.net/9fbdfb11363dac2de5c61c7e21277655.pdf

7. Childhood Dementia Initiative. Childhood Dementia: Family experiences in Western Australia. July 2024. https://www. childhooddementia.org/getasset/A5RLME

8. Childhood Dementia Initiative (2025). The NDIS experience for Western Australian families affected by childhood dementia: Brick wall after brick wall https://www.childhooddementia.org/getasset/691WU0

9. Suzanne M. Nevin, Lauren Kelada, Kristina L. Elvidge, Megan Maack, Gail Hilton, Joanne Kershaw, Ellie Da

Ros, Nancy E. Brigg, Michelle A. Farrar, Claire E. Wakefield. Navigating the Complex Landscape of Childhood

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Dementia: A Mixed-Methods Study on Caregiver Psychological Wellbeing, Grief, and Systemic Challenges. J

Pediatr Psychol. In press 2025.

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Appendices

Appendix A: Survey Methodology

Survey Design: Online survey conducted October-November 2025

Target Population: Parents and guardians of children with childhood dementia

Methodological Note: This submission draws on qualitative survey data from a small sample of families affected by childhood dementia. While the sample size limits statistical generalisation, the findings provide valuable insights into the lived experiences of this marginalised community and highlight patterns of systemic discrimination. The depth and consistency of experiences reported across multiple families and geographic locations lends weight to the findings. This qualitative data complements broader disability discrimination research and the Disability Royal Commission findings.

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Appendix B: Key Themes from Survey Data

• Areas of discrimination experienced: o Education: Most families o Healthcare services: Most families o Access to therapies/support: Majority of families o Public places: Half of families o Transport: Half of families o Community activities: Half of families

• Educational concerns: o Inadequate adjustments: Half of families o Difficulty accessing appropriate settings: Substantial number o Staff lacking understanding: Substantial number

• Healthcare barriers: o Services not understanding childhood dementia: Nearly all families o Long waiting times: Majority of families o Lack of specialist knowledge: Majority of families o Being refused services: Substantial number o Geographic barriers: Half of families

• Support for reform: o Modern terminology important/very important: Nearly all respondents o Positive duty important/very important: Nearly all respondents o Family consultation important/very important: All respondents

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Appendix C: Representative quotes from parents of children with dementia conditions

On education discrimination:

“Schoolsareveryafraidofdisabilityandholdtheideathattheydon’twanttodotoogoodofajobbecausethen they’llgetotherkidswithdisabilitywantingtoenrol”

On healthcare discrimination:

“Mydaughteriscurrentlyhaving10-30seizuresaday,butweneedtowaittillFebruaryforhertohaveanEEGto confirm.Wearequicklydischargedwithoutanswers…Sheisnevertreated.“

On physical access:

“Wecannotphysicallyaccessmanyplacesasourruralcountrytownhasverylimitedfootpathsandmostshopsetc havestepstoaccess“

On Understanding:

“Disbeliefthatchildhooddementiaexists”

On Progressive Conditions:

“Thereneedstobeanacknowledgmentthatamedicalconditionandadisabilityarenotmutuallyexclusiveandkids withchildhooddementiacanhavealifelimitingconditionbutstillhavelifetolive”

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For further information about this submission, please contact:

Lived Experience Manager

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