Mental Health in Focus: A Call for Action 

Mental health is fundamental to overall well-being, enabling individuals to navigate life’s challenges, realise their potential, and contribute meaningfully to their communities. However, for individuals with Spina Bifida and Hydrocephalus (SBH), the path to mental well-being is often obstructed by societal stigma, discrimination, and a lack of adequate support systems.

At the International Federation for Spina Bifida and Hydrocephalus (IF), we recognise mental health as a universal human right and a cornerstone of an inclusive, fulfilling life. Our commitment aligns with the principles outlined in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which underscores the importance of combating stereotypes and fostering acceptance for individuals with disabilities.

The Challenges We Face

For the SBH community, mental health concerns are compounded by pervasive taboos surrounding both disability and mental health. These barriers often lead to social isolation, hinder self-acceptance, and limit access to essential psychological and healthcare services. Gaps in multidisciplinary care and insufficient resources within healthcare systems further exacerbate the situation, particularly during critical life transitions from childhood to adulthood.

IF’s Response and Initiatives

To address these challenges, IF has prioritised mental health through various initiatives:

• Awareness Campaigns: Highlighting the importance of resilience, disability acceptance, and psychological support during awareness days like World Mental Health Day.
• Intergenerational Learning: Facilitating exchanges between young and older members of the SBH community to share life experiences and foster mutual understanding.
• Advocacy for Inclusive Healthcare: Promoting equitable access to psychological support as part of multidisciplinary care.
• Capacity Building: Strengthening advocacy, outreach and awareness-raising capacities by facilitating open discussions and comparisons during a series of events, such as the Webinars on Mental Health Matters and the special dedicated youth gatherings.

Our collaborative efforts with the IF International Youth Group SBH and the IF Working Group on Ageing with Spina Bifida and Hydrocephalus have identified key focus areas, including disability acceptance, family support, and addressing gaps in mental health services within public healthcare systems.

The Path Forward: Recommendations

To create an inclusive world, we call on policymakers, healthcare professionals, and other stakeholders:

• To ensure the availability, accessibility, and variety of mental health services so that all individuals with SBH have access to inclusive psychological support services through the integration of psychologists, general medicine, and social support system, at affordable costs or for free, by implementing coordinated and holistic interventions encompassing prevention, care, and support.
• To formulate, update, and enforce national policies, programs, and legislation on mental health, including codes of conduct to monitor the protection of human rights, in alignment with the United Nations Convention on Right of Persons with Disabilities (UNCRPD), scientific evidence, and best practices. 
• To provide and finance specialized training programs for healthcare professionals to effectively address the specific mental health needs of individuals with disabilities through person-centred and rights-based approaches.
• To promote awareness of mental health through campaigns aimed at combating stigma related to disability and mental health and encourage participation in support groups and online platforms that offer dedicated spaces for mutual assistance, dialogue, and the exchange of experiences. 
• To safeguard and promote, at multiple levels, the inclusion and active involvement of the SBH community, organizations of persons with disabilities, and users and ex-users of mental health services. Provide leadership programs and skill development opportunities to enable SBH community members to actively influence social and political decisions, in adherence to the United Nation principle “Nothing About Us Without Us”.
• To integrate mental health into routine health information systems by collecting, analysing, and reporting disaggregated data to improve service delivery, prevention strategies, and contributions to the Global Mental Health Observatory. 

Download our full statement on mental health here

These recommendations are part of the efforts to ensure continuous, coordinated and inclusive multidisciplinary care and to foster discussion and involvement on these issues among stakeholders at national and international level collected in our Kuala Lumpur Declaration. 

We are seeking co-signatories for this declaration to ensure that our message reaches governments, international organisations, healthcare professionals, and the general public. Your support is crucial to raise awareness and strengthen the global commitment to these vital issues.

Co-sign the Kuala Lumpur Declaration 

Your support will help promote a meaningful change!