Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need. Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned below is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked. This month’s question is: What is cerebral palsy (CP) and how do each of the sections below apply to people with CP? This edition of Answered Questions includes items that explain what CP is, target sedentary behavior in adults with CP, speak about technology and improved mobility for babies and toddlers with CP, develop videogames that aim to improve the quality of life of people with CP, discuss employment accommodations, and deals with social media and augmentative and alternative communication. We also include a Spanish guide for education professionals that discusses the special needs of children with CP. This month, we have split the resources section in two: One for resources in English and Spanish in the US, and the second for resources in Spanish speaking countries.
What is Cerebral Palsy?
According to the Centers for Disease Control and Prevention (CDC), cerebral palsy (CP) is a “group of disorders that affect a person’s ability to move and maintain balance and posture.” CP is caused by damage to the developing brain or abnormal brain development, both of which may affect a person’s ability to control their muscles. Symptoms of CP can vary from person to person. For example, a person with severe CP might not be able to walk at all and might need lifelong care and assistance, while a person with mild CP might walk awkwardly but might not require any special help. Although all people with CP have problems with movement and posture, some also have related conditions. These conditions may include intellectual disabilities, seizures, vision/hearing/speech disabilities, changes in the spine, and/or issues with their joints. There are four types of CP: spastic cerebral palsy, which increases a person’s muscle tone; dyskinetic cerebral palsy, which involves problems controlling the movement of their hands, arms, feet, and legs; ataxic cerebral palsy, which involves problems with balance and coordination; and mixed cerebral palsy, which can include symptoms from more than one type of CP. To learn more about CP, early signs, screening and diagnosis, treatment and interventions, the CDC provides great information and references in English. They also provide an information sheet in Spanish for parents and family members.
NIDILRR Projects:
Targeting Sedentary Behavior Reduction in Adults with Cerebral Palsy Using a Real-Time Behavioral Intervention (90IF0102).
The aim of this project is to find the extent of cardio-metabolic risk in adults with CP and to reduce sedentary behavior through the use of a new strategy that will lead to behavior modification that is sustainable and to improved health outcomes. Through its three objectives, the project hopes to compare total sedentary behavior and cardio-metabolic risk profiles between adults with CP and matched adult controls; determine the effectiveness of a new wearable intervention (iReducSB) based on smartphone technology to reduce sedentary behavior and lead to improved behavior change in adults with CP; and determine the effects of reducing sedentary behavior and increasing fragmentation of sedentary behavior on cardio-metabolic risk.
Dynamic Supported Mobility for Infants and Toddlers with Cerebral Palsy (90IF0076).
This project’s objective is to determine if dynamic supported mobility (DSM) utilizing new technologies can lead to a greater improvement in motor function in traditional physical therapy in infants and toddlers with cerebral palsy. Participants will receive either DSM training or conventional therapy. The motor outcomes will be compared to published percentile scores to see if the trajectory of the motor development that was predicted has been altered. Secondary outcomes include improvements in postural control, engagement in daily life, parent satisfaction, and physical activity at home.
Research:
“Social media has opened a world of ‘open communication’:” Experiences of adults with cerebral palsy who use augmentative and alternative communication and social media. (J71684).
This article discusses a NIDILRR-funded study that used an online focus group to investigate the experiences of people with CP who utilize social media and augmentative and alternative communication (ACC). The information that was gathered during this study included: (1) the advantages and disadvantages of social media, (2) barriers to successful use, (3) supports for successful use, and (4) recommendations for other people who use ACC, support personnel, policy makers, and technology developers. The article also discusses the results as they relate to themes and to published literature.
Technology:
A videogame is created for people with cerebral palsy (uni>ersia España)
Researchers from the University of Sevilla in Spain developed a videogame with the objective of improving the quality of life of people with CP by providing knowledge through social media content adapted for people with CP. The game, called “Adapted Educational Resources” (REEDAD – Spanish acronym), is designed for people with CP and utilizes a simple interface and tools. REEDAD can be adapted to the abilities of each participant by changing the size of the buttons and the speed of the movements on the screen. This videogame was created based on input from attendees at employment and inclusion workshops.
Rehabilitation:
Physical Therapy and Cerebral Palsy (Monografias.com).
This article provides a definition, etiology, and classification of CP. It also describes the historical focus of treatments of CP, along with the growth and development milestones of a baby, toddler, and preschool-age child. Finally, it discusses several treatment options including orthopedic surgery and physical therapy.
Education:
Education for People with Cerebral Palsy and Related Disabilities (Confederación ASPACE).
A publication from Confederación ASPACE, this guide provides technical information to teachers, professors, and other interested parties in regards to CP. The guide includes a definition of CP; how it manifests in a person’s motor, language, and communication abilities; how CP manifests in a person’s cognitive, sensory, and social functions; and how CP affects their well-being and health. It also describes the general special educational needs of people with CP in relation to a person’s motor, language, and communication abilities; their cognitive, sensory, and social functions; and their well-being and health and describes the educational response to these needs. The guide includes a discussion on laws in Spain relating to education and people with disabilities.
Employment:
Employment Accommodations for People with Cerebral Palsy (Job Accommodation Network).
The Job Accommodations Network (JAN) provides a list in Spanish of accommodations that an employer may provide to an employee with cerebral palsy. This list can be found in JAN’s Spanish language resource page under “Acomodaciones en el empleo para personas con parálisis cerebral.” In its series on accommodation and compliance, JAN also provides valuable information for employers on several topics that include what CP is and employer compliance. You can find this series below the Effective Accommodation Series and the guide for CP is titled “Empleados con parálisis cerebral.”
Inclusion:
Integration of students with cerebral palsy in scholastic physical education (efdeportes.com).
This online article from by Pilar Barreiro Senra shares information about CP, including its causes, classifications, and the disorders and secondary conditions associated with CP. It also discusses some of the goals of physical education in schools and the adaptation criteria needed to include children with CP in physical education classes.
Resources:
- Resources in the United States
- Center for Parent Information and Resources (CPIR) provides information and resources in English and Spanish for parents of children with cerebral palsy (CP) and other disabilities. The information includes definitions of terms, types of help available, types of treatments, information related to education, and tips for parents and teachers. Contact information is included for several resources. To find a Parent Center near you, please visit CPIR’s Center Locator page (in English only).
- United Cerebral Palsy (UCP) is a nonprofit organization that provides education, advocacy, and support services to help ensure a life without limits for people with CP and other disabilities. They have UCP affiliates throughout the country that help provide services such as housing, physical therapy, training in assistive technology, social and recreational programs, community living, advocacy, employment assistance, individual and family support, and state and local referrals. UCP provides a space where you can search for your local UCP affiliate and search for resources in your state. UCP also provides a page where you can explore the resources they provide. They also provide information on the latest news and events related to CP.
- The National Institute of Neurological Disorders and Stroke (NINDS) has great information in English and Spanish on CP that includes signs and symptoms, the different forms of CP, how it is diagnosed and treated, and information on what research is being done. They also provide a list of clinical trials currently occurring at NINDS.
- Other US resources that provide information, support, etc.: http://www.cdc.gov/ncbddd/cp/links.html. The page is in English; however some of the resources listed provide services in English and Spanish.
- Spanish language resources from around the world:
- Resource Guide for People with Cerebral Palsy in Castilla and León from the Junta de Castilla y León, Fundación Once, and Federación ASPACE describes what CP is; services that promote personal autonomy, including early intervention services, cognitive stimulation services, and psychosocial rehabilitation; support programs for the families of people with CP, including support and training programs and transportation services; describes day centers and residences; VR and special education centers; employment; the different types of documentation available; the different Spanish laws; and additional online resources.
- El Centro Ann Sullivan del Perú (CASP) is a non-profit organization in Peru centered on the education of people with CP, autism, Down syndrome, and other developmental disabilities. CASP provides an integral education system that includes programs that encompass the whole life of the student. It has grown into a model international center on inclusion, education, training, and research as they relate to people with developmental disabilities.
- Fundación NIPACE (Spain) is a center in Guadalajara, Spain that provides neuropediatric physical therapy, adult and pediatric robotic locomotion therapy, hydrotherapy, intensive specialized neurorehabilitation, and other specialized therapies to children and adults with CP. They also provide other services that include neuropsychology, neuro-stimulation through the use of the topology system, and the Vojta tool as an early intervention in physical therapy. They also provide workshops for parents, training opportunities in Spanish speaking countries, and perform rehabilitation research.
Further Research:
