IMG 059715 May 2017 // Since 1993 every 15th of May the UN International Day of Families is celebrated around the world and this year the UN has focused on one specific topic: “Families, education and well-being”. Family-oriented policies and programmes are vital for the achievement of some of the Sustainable Development Agenda. In particular, the role of families is crucial in Goal 4: Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all.

The Day also focuses on good practices for work-family balance to assist parents in their educational and caregiving roles. Last month, the European Commission launched the Work-Life balance Directive. It attempts to take a deeper approach to equality between women and men in order to properly represent the role of women in society and the labour market while getting a fairer sharing of family care responsibilities. This is particularly important for families that have members, children or adults, with disabilities such as Spina Bifida and Hydrocephalus, where it is often the women who leaves her job to become a full-time carer, resulting in a loss of income for the family, and with a possible negative effect on her mental health and well-being.

On April 7, the World Health Day, we highlighted the importance of mental health and well-being of people with disabilities and their informal caregivers. Adequate measures to protect social rights are crucial to help families to take care of their members with disabilities and, specifically, to prepare children for living an independent life, which is a key factor for the well-being of the whole family.

As IF expressed in its reflection paper about mental health and well-being of people with spina bifida and hydrocephalus, the psychological toll of SBH on parents and carers can be significant when they struggle to come to terms with the unpredictable nature of the condition and have to make difficult decisions for their child (such as high risk surgery, painful therapy and even an amputation).

We cannot forget society’s role in ensuring the well-being of families and need to keep working for the eradication of ‘disablism’. It is essential to stop holding persons with disabilities and parents of children born with disabilities responsible for the disability, and blaming them for making rightful demands on state budgets for disability benefits, healthcare costs, mobility devices, personal assistance or reasonable accommodation.

The importance of well-being of the whole family for the healthy development of the child cannot be overestimated. This is why IF works to ensure the right of every family that has been touched by SBH to the best available care, support and information at all stages.

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