Blog post by: John Coughlan, Secretary General of CP-ECA.
Every year on 6 October, we mark World CP Day. What is cerebral palsy (CP)? How many people in Europe have cerebral palsy? And what difference does EU action make to their lives?
Cerebral palsy is the most common form of childhood-onset physical disability at 1.85 per 1000 live births. An estimated 800,000 EU citizens have cerebral palsy. More than 17 million people across the world live with cerebral palsyand another 350 million people are impacted as caregivers.
Cerebral palsy is caused by a brain injury at or around birth resulting from premature birth, infantile stroke, an incident in the womb, perinatal complications or even genetic factors. It leads to movement impairments, but most people with Cerebral palsyreach adult life and even old age.
Cerebral palsy is a lifelong condition, and there is no known cure. It is not degenerative, but musculoskeletal complications become more painful and difficult to manage. Cerebral palsy is complex: one in four people with cerebral palsy cannot talk; one in four cannot walk; one in two have an intellectual disability. Other secondary challenges include epilepsy or difficulties in feeding, vision or hearing.
No two persons with cerebral palsy are the same. Their condition can range from a weakness in one hand to an almost complete lack of voluntary movement. Solutions to ensure mobility, care, social inclusion, participation and employment can be expensive and labour-intensive. Yet people with cerebral palsy are human beings with full dignity and rights.
Cerebral palsy is too common to be classed as a rare disease but not common enough to be recognised as a priority for medical research funding. This has to change. Every child born has the potential to end up with cerebral palsy.
Half of children with cerebral palsy spend time in a neonatal intensive care unit – a reason to be alert – but half do not. Parents usually realise that their child is not achieving developmental markers after several months. Formal diagnosis will only follow with MRI scans months or years later. This is a critical period during which the brain is still developing, and early intervention can remedy some of the original brain injury. Earlier detection and screening would lead to better outcomes for people with cerebral palsy in the long term.
While special schools provide an integrated structure for the educational, therapeutic and social development of children with cerebral palsy, many families place their child with cerebral palsy in the mainstream education system in the justified expectation that they should be able to thrive. It is often a struggle. Much work remains to be done to achieve a true “school for all”.
Educational and health systems seem to forget that children with cerebral palsy become adults with cerebral palsy . Specialist knowledge, care and services often stop when a child turns 18, so the needs of adults with cerebral palsy are underserved.
For adults with mild cerebral palsy, there is a chance of finding employment. For those with more severe forms, the options and support are more limited. Measures to combat discrimination can be too simplistic for this complex disability: installing ramps is good, but cognitive issues and fine motor skills also need to be considered.
Adults with cerebral palsy have the right to participate in the democratic process, yet legal, physical and psychological barriers prevent them from doing so. CP-ECA is leading an EU-funded project that will champion solutions to overcome these barriers.
The EU influences the lives of people with cerebral palsy through its legislation, standard-setting, funding priorities and humanitarian aid to low-income countries where the prevalence of CP is much higher. CP-ECA articulated this before the European Parliament elections in its “Manifesto for CP”. Now it is time to work towards a joined-up action plan on cerebral palsy that does justice to the complexity of the condition.
The Paralympic Games showcased the talent of people with disabilities, and athletes with cerebral palsy were well represented on the medal podiums in sports such as Boccia and para-equestrian that are better suited to their abilities.
Let’s take World CP Day on 6 October as an occasion to celebrate what people with cerebral palsy achieve and as a reminder of how much we still need to do better!
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About CP-ECA
The Cerebral Palsy in the European Union Association (CP-ECA) is a non-profit association and the European branch of the International Cerebral Palsy Society (ICPS).
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Photo credit: olesiabilkei retrieved from iStock