The situation in Austria
2–3 in 1,000 children born at term are born with cerebral palsy, i.e. during pregnancy or birth they suffered a brain haemorrhage or other damage to the brain, e.g. oxygen deprivation at birth, which will manifest as a cerebral movement disorder over the course of their life and lead to lasting problems. Among premature babies, up to 40% of children are affected – among extremely premature babies the figure is even higher. In Austria, 200–250 children are born with cerebral palsy every year – so around 4,000 children aged 0–18 are affected by cerebral palsy.
Other indications such as malformations, rare syndromes, epilepsy, childhood strokes, damage caused by infections, injuries from accidents or after cancer treatment also require intensive rehabilitation to support these children and their families as well as possible.
In Austria, around 6,000 children are affected by a movement disorder. The Orthopädie Speising hospital speaks of far more.
Cerebral movement disorders cannot be cured, but they can still be managed with early and intensive treatment, as the brain's neuroplasticity is still very high between the ages of 0 and 3 and great success can be achieved with early intensive therapy. For many children, this can mean a completely different health path and thus also a different career, as cognitive development goes hand in hand with mobility.
In the case of cerebral palsy, many parents are advised to do physiotherapy and/or occupational therapy once a week. It is usually only diagnosed between the first and second year of life, as in milder cases paediatricians often regard parents' concerns as normal variation in development. The option of rehab, and thus early support, is also little known.
Most parents know “that something is not right”, yet they are often not taken seriously by the paediatrician. By the time they find their way to a neurological assessment, a lot of valuable time passes – time that can make an important difference to further development. That needs to change. Read statements from some parents.
According to the latest studies, it is now recommended to start intensive therapy from the 3rd month of life if a neurological injury is suspected. A neuropaediatric examination and a brain ultrasound can quickly provide clarity if there is a suspicion. Germany now offers intensive rehab camps for children under one year. Evidence-based treatment options that are not yet available in Austria are also offered there, e.g. SDR surgery or cryoneurolysis.
To put it bluntly: doing physiotherapy and/or occupational therapy once a week is about as effective for learning new movement sequences as learning to write, do maths or play the piano with only one lesson a week.
When a child is learning to play tennis or ski, summer camps or ski courses are completely normal – so why not also for learning and practising other new movement sequences?
Neuropaediatric services in Austria are currently limited overall and also overloaded, even though demand keeps rising. Waiting times at developmental centres are long, and occupational therapy places are scarce. And that is only the beginning, because these children grow up. Future challenges must also be considered and supported, ideally leading to an independent working life. The highly effective CIMT (constraint induced movement therapy), developed back in 1995, is still relatively unknown in Austria.
Australia has begun to introduce a therapy standard to make success and progress measurable and so give all children the same opportunities.
Parents are often left alone with diagnoses and are forced to research on the internet and social media and network there. They learn therapy methods to be able to help their children better and are forced to pay for private doctors and even go abroad for experimental treatment approaches. This is not feasible or affordable for all parents. Many families therefore also depend on donations to secure therapeutic care for their children, e.g. via the Dank dir association, Bande mit Herz or Licht ins Dunkel.
In a study with the Vienna University of Economics and Business, the VKKJ found that timely early intervention has a high SROI (social return on investment). Every euro invested returns €13 in the long term, and up to €26 when the effect on the whole family is taken into account.
In addition to private physiotherapists and occupational therapists, there are outpatient centres and developmental support centres, often founded by parent initiatives, which usually also have long waiting lists. As rehab options, Lower and Upper Austria have the two Kokon centres in Bad Erlach and Rohrbach, which mainly offer group therapy. But for children with multiple disabilities in particular, one-to-one therapy combined with medical treatment is essential, with experts from medicine, therapy, education and care working together across disciplines. The rehab centre in Judendorf-Straßengel in Styria is currently the only one offering individual therapy. Medical treatment is not possible there either.
Hospital outpatient clinics are a good point of contact for diagnosis and medical treatment, but the accompanying therapeutic treatment is missing. Hospitals currently only have acute beds.
Austria needs a neuropaediatric clinic of international standard combined with evidence-based and standardised rehab as the first point of contact for quick diagnosis and therapy planning.
In Bavaria, the Schön Klinik Vogtareuth has an excellent reputation and offers international patients top-class treatment and rehabilitation from the early intervention stage up to the age of 18. The goal is to create a service modelled on this facility in Lower Austria – close to Vienna.