Assistive technology is one of the best methods to make life easier and provide autonomy to people with functional diversity.
Bioinformatics is bringing great advances in the detection and treatment of neurodevelopmental disorders through genetics.
The II Conference on Integrated Care in Cerebral Palsy and other Neurodevelopmental Pathologies has brought together people from more than 15 countries and organizations from all over Spain.
On March 17 and 18, the II Conference on Integrated Care in Cerebral Palsy and Other Neurodevelopmental Pathologies was held, organized by the Aspace Catalonia Foundation, with the collaboration of the Hospital Sant Joan de Déu and the Hospital Vall d'Hebron , at the CIM Aspace center. The conference series was focused on professionals in the mental health, neurorehabilitation and occupational therapy sectors. During these conferences, the comprehensive approach to neurodevelopmental pathologies was shared from different complementary points of view , providing an innovative vision of clinical and research advances.
According to Elena Puigdevall, General Director of Aspace and one of the organizers of the event, " the conference has been a success with national and international participation, the attendance of professionals from 15 countries and cerebral palsy care entities from all over Spain."
The conferences were in Spanish, with simultaneous translation of the international presentations, and were distributed in three areas: Technology Table, Mental Health Table and Transition Table.
Technology table
Firstly, the Technology Table discussed all issues related to assistive technology applied to people with multiple disabilities . This section featured presentations from different professionals with innovative ideas and the latest advances in the sector.
Àngel Aguilar, Engineer and Director of the Resources and Support Technology Service of the Aspace Catalunya Foundation, gave a practical demonstration of the use of the latest technological advances in environmental control , adaptation to rehabilitative activities, augmentative communication, mobility and functional rehabilitation. According to Ángel Aguilar, “ we define objectives in a cooperative manner with people. Each person decides what they need, not professionals or families. It is a way of promoting autonomy ”. The following participated in this presentation:
- Oriol Roqueta, retired lawyer fighting for the rights of people with functional diversity, who, with severe spastic quadriplegia, explained how he manages to live alone with the help of low-cost technology: "Currently I live independently", however, Oriol also claims that "technology helps us in various ways, but it does not replace personal assistance and human treatment".
- Rhoda Nieves, Occupational Therapist of the Aspace Catalunya Foundation, explained the operation of the support technology workshop that she carries out at the Aspace Occupational Therapy Center in Badalona and the success it is having among the users.
- Joel Bueno, a 15-year-old Aspace user, made one impactful presentation using the Tobii augmented communication tool. It was dedicated to the difficulties in moving and obtaining customized orthopedic equipment and how, thanks to the support technology, he is able to make music and how he imagines his future.
Within the technology table we also had the opportunity to listen to Nora Sanz from the Nipace Foundation. At the center, located in Guadalajara, they have been working with exoskeletons for years to promote neurorehabilitation and her presentation revolved around how the advantages of their use had been scientifically demonstrated. According to Nora Sanz, “ robotic therapy has been shown to improve physical cognitive integration, joint biomechanical properties, motor control and balance ” although they must always be “a complement to the rehabilitator”. At Nipace they combine the use of exoskeletons with virtual reality to improve the self-esteem and results of users.
For her part, Dr. Gloria Soto , Professor of the Department of Special Education at San Francisco State University, demonstrated how “language is essential for development and the lack of learning it is manifested in problems with the development of social, academic and emotional interaction. Language is necessary to develop the person's own narrative”. There are different modalities of augmentative and alternative communication, but “all of them must favor that there are fewer steps between the concept that is thought and the expression of it”.
Mental Health Table
The Mental Health Panel has addressed mental health in the different neurodevelopmental pathologies . In this aspect, great professionals from the Aspace Catalunya Foundation, the Vall d'Hebron Hospital and the Sant Joan de Déu Hospital have stood out.
Laura Estrela and Óscar García, psychologists from the Aspace Catalunya Foundation, spoke about how psychotherapeutic groups are a valuable and efficient tool for people of all ages with neurodevelopmental pathologies . Psychotherapists “have to adapt to people's needs, there are patients who due to behavioral problems cannot participate or their adherence must be done gradually”. In addition, “global therapy does not exempt individual therapy. Valuing the person at a global level is important to know how and when to integrate the person into a therapeutic group, but the group will be an extremely valuable tool for mental and social processes to occur, which, individually, would never occur”.
In the presentation given by Doctors Gemma Español and Laura Gisbert, both psychiatrists at the Vall d'Hebron Hospital, the comorbidity between cerebral palsy and autism spectrum disorders and ADHD was addressed. It has been shown that “there is an increase in the prevalence of ASD and ADHD with cerebral palsy (…) at an etiological level everything indicates that there is a relationship ”, however, “there are not enough tools to make a correct diagnosis of ASD and ADHD in cerebral palsy”.
Transition table from childhood to adulthood
Finally, the Transition Table discussed the approach from childhood to adulthood for people with cerebral palsy . In this regard, we were able to listen to presentations by professionals such as Iona Novak, from the Cerebral Palsy Alliance and Sydney University. Novak showed video examples of the implementation of the good practice guides . These guides can be found translated for free on the Aspace Catalunya Foundation website. As a world reference in cerebral palsy, Professor Iona Novak aroused great anticipation and many attendees were able to talk to her and ask their questions regarding her different works.
Eduard Pellicer from the Hospital Sant Joan de Déu and Laura Panadero from the Fundació Aspace Catalunya, social workers, spoke to us about the transition to adult life for people with cerebral palsy. The transition is a challenge for users, families and institutions. In this sense, the Hospital Sant Joan de Déu and the Fundació Aspace Catalunya work closely with a directed clinical history, neuroimaging and genetic studies . This shared experience also takes into account the psychosocial aspects of people and their families, “it is not only a bureaucratic procedure, it is a personal transition in every sense”.
Dr. Mercedes Serrano insists that the concept of cerebral palsy “does not necessarily exclude the possibility of a genetic basis that explains the patient's clinical condition in whole or in part”. In this sense, “dysmorphisms often indicate a genetic involvement with cerebral palsy, as is later demonstrated by bioinformatics”, the method of interpreting HPOs to compare them with family samples and those of the person themselves. Knowing the genetic basis of the person with cerebral palsy allows us to better understand the person's condition and to carry out personalized techniques for them and their family in the long term.
The approach to cerebral palsy in adulthood by Dr. Francisca Gimeno of the Aspace Catalunya Foundation was particularly interesting . Often, more attention is paid to the early stages and “adults suffer from a lack of integrated care. The problems they suffer from at the specific moment are treated in health centers, but not in a holistic way”.
