MADRID, 1 Oct. (EUROPA PRESS) –
The ASPACE confederation together with the families of people with cerebral palsy have demanded, on the occasion of World Cerebral Palsy Day, which is celebrated this October 6, the importance of early care and have denounced lack of support, lack of coordination between services and inequalities between the autonomous communities.
“The moment of receiving the diagnosis was a very hard moment, in which there was not enough information and, above all, a lack of empathy on the part of the health service personnel,” explains Cristina, mother of an 8-year-old girl with cerebral palsy in the form of spastic tetraparesis.
Furthermore, they denounce the differences between autonomous communities, since they had the opportunity to see how in one they offered four physiotherapy sessions a week while in another, only one session plus one stimulation session every 15 days when there were a few months left to be enrolled in school.
For her part, Alejandra, Isabella’s mother, draws attention to the problem of “total lack of coordination between professionals” since, after the birth, they left the hospital without a diagnosis. They had to go to the pediatrician at the health center and another children’s hospital to get a name. “We were taken aback, it was a very tough situation,” she remembers.
Where both mothers found true support was in a center of the ASPACE confederation. “The true meaning of early care came when we discovered the ASPACE family and they began to work with our daughter, they gave us specific guidelines and we felt enormously supported,” says Cristina.
This is also demonstrated by Ane, an 8-year-old girl with cerebral palsy and great support needs, who uses an alternative communication system thanks to which she can make her own decisions. “Thanks to early attention and my physiotherapist and my speech therapist from ASPACE I have improved my personal autonomy and my communication, being able to be the one who decides what clothes I wear or what I want to watch on TV,” she says.
Another problem that families bring to the table is conciliation, since many mothers have to stop working to dedicate 24 hours to their child. Precisely, they point out that another challenge is for parents to be able to reconcile their work and family life.
Added to this are the additional costs that it entails since, as they point out, many orthoprosthetic products are needed, wheelchairs, foot and hand orthoses, communication systems and therapies, as well as many hours of assistance.
“We should receive more help from the dependency law, our quality of life cannot depend on our economic resources or place of residence,” claims Laura, a woman with cerebral palsy.
For all these reasons, among the demands of the families and the ASPACE confederation, there is greater speed in diagnosis, better coordination between health services, social services and education; Cerebral palsy detection protocols and referral channels to specialized associations.
Likewise, they ask for an early care law with common criteria in all autonomous communities regarding access and provision of the service and to end inequalities between Autonomous Communities; greater support from the administration for entities such as ASPACE, and more financial aid to families such as extending the provision for care of minors affected by cancer or another serious illness up to 30 years of age.
