Children with a diagnosis of cerebral palsy often have significant physical limitations that prevent exploration and full participation in the environment. Assistive technology systems can provide opportunities for children with physical limitations to interact with their world, enabling play, communication, and daily living skills. Efficient access to and control of the technology is critical for successful use; however, establishing consistent access is often difficult because of the nature of the movement patterns exhibited by children with cerebral palsy. This article describes a 3-phase model of evaluation and intervention developed and used by Assistive Technology Services at the Aaron W. Perlman Center, Cincinnati Children’s Hospital Medical Center, to establish successful access to technology systems in children with cerebral palsy.
The International Classification of Functioning, Disability and Health, known as the ICF, provides a common language and classification system that focuses on health and health-related states instead of the consequences of disease, and represents a global paradigm shift in the way professionals view health and disability. The ICF asserts that an individual’s health and functioning should be measured by his or her participation in life situations, as opposed to the absence of disease. Participation is defined as “involvement in a life situation” and it is an outcome of the interaction between the person with a health condition and the context in which he or she lives. This has important implications for those working with individuals with conditions such as cerebral palsy (CP). CP is a chronic health condition that often results in participation restrictions in all areas of community and family life, including school, work, recreation, play, self-help, and mobility. The ICF framework allows health professionals to expand their focus beyond impairment-based interventions and place equal value on those interventions that promote function and participation in life situations. Thus, care delivery models should use a holistic approach that addresses the medical needs and the effects of the disability on function.
Therapeutic intervention for children with CP should include a systematic assessment of the physical abilities and the environmental/contextual constraints that impact participation, with an emphasis on how best to improve access to the environment and participation in all aspects of life. Assistive technology systems often present as the principal means for children with significant impairments and restrictions to effectively control their environment and engage in desired daily activities. Therapeutic challenges to implement successful assistive technology systems include establishing consistent access to or control of the assistive technology device and providing children with opportunities to use the device effectively in natural environments.
A multidisciplinary, family-centered approach to evaluate children’s ability to access assistive technology and develop the skills necessary for successful use across all environments can be particularly effective. The aim of this article is to describe a 3-phase model of evaluation and intervention developed to maximize access to and control of assistive technology. The model relies on the continuous cycle of evaluation, intervention, and modification, which occurs in 1 or more of 3 sequential phases of skill acquisition: exploratory use, consistent use, and novel use. These phases incorporate developmental and ecologic considerations to provide interventions that are meaningful to the child and family across all environments. The literature confirms that assistive technology should be introduced early and evaluated frequently to maximize participation in activities that enhance early learning. Early exposure to technology is indicated for some children with CP, and continual modifications of the technology and the intervention are needed as the child develops and acquires new skills through participation in his environment.
Theoretical framework
A combination of theoretical frameworks is suitable to guide interventions, with an emphasis on the developmental and ecologic factors that influence the functional skills of children with complex needs. Two specific theoretical approaches provide the framework for evaluating and establishing access in children with physical impairments, namely Piaget’s theory of development and the Person-Environment-Occupation Model.
Piaget viewed action and active engagement as instrumental processes in the cognitive and intellectual development of children. Children with moderate to severe neurologic and developmental disabilities are often unable to explore or manipulate their natural environments independently. Research has demonstrated that, by the age 4 years, a child with significant mobility restrictions may have already established a sense of learned helplessness and lack of motivation to explore the environment. If children are not provided with developmentally appropriate opportunities for exploration and interaction, they are unable to actively construct and assimilate knowledge, thus development may be delayed.
It is a fundamental concept that children learn and develop by being active participants and not passive observers. Regardless of age, children benefit when a holistic view is taken and when focus is on increasing their active participation in all relevant environments (ie, parent-child interaction, preschool, school classroom, and community activities). When children with physical and neurologic impairments are given the opportunity to use an assistive technology device, they become more active participants and experience success and control over their environment. The 3-phase model for determining access recognizes that active, self-directed exploration is a key factor for development of skills in children. Therapists identify and use activities that are child-centered, developmentally appropriate, and motivating, and that provide opportunity for mastery and skill development.
A complementary ecological approach, such as the Person-Environment-Occupation Model, focuses on person-environment interactions and provides therapists with a means of viewing and analyzing the occupational performance of children situated within their family and across all the environments where participation is desired. Intervention focuses on changing the child, the environment, or the task to maximize person-environment-occupation fit and occupational performance. Thus, this model provides an ideal framework for identifying the occupational performance issues of a child with cerebral palsy and targeting the area (person, environment, or task) that provides maximal effect and impact upon performance.
The concepts of the Person-Environment-Occupation Model are readily incorporated into a therapeutic approach for evaluation of a child for access to technology ( Box 1 ). The therapist should systematically evaluate the child’s physical and cognitive skills, environmental barriers and facilitators (including family concerns), and the demands of the task (task analysis) to determine best fit for optimal device use. The emphasis is not solely on establishing normal movement patterns but on using the functional skills the child has and maximizing those skills through modifications of task and environment to achieve optimal ability to use assistive technology and to participate in age-appropriate, meaningful, and motivating activities.
- 1.
Allow the child time to experiment, explore, and have success. Children with disabilities often have processing deficits and decreased motor planning, and they require a longer time to respond to a task. If a child experiences success repeatedly, it is more likely that he/she will be motivated to continue. Before making the task more complicated, vary the activity at the same level of difficulty to allow for a greater chance of mastery.
- 2.
If the child is required to perform a physically demanding task, the cognitive demands should be minimal. If the child is struggling to understand the concept of the task, it is more difficult to produce the physical response because both require significant energy.
- 3.
The activity should be motivating and personalized to the likes of the child, if they are known. The more engaging the activity, the greater the reward for the child. Because it often takes significant efforts to produce a response, especially in the early phase of learning, the reward must be immediate and worth the effort.
- 4.
The activity must be developmentally appropriate for the child. The developmental age (determined in the initial assessment) may be lower than the chronologic age. Cognitive match is important in that the activity will not be motivating if cognitively too difficult or too easy.
- 5.
Once the control site and control interface have been established, integration into the child’s environment is important. Allowing for the frequent use and opportunity in the child’s environment is important for skill development and mastery. Providing a home set up gives the child the opportunity to gain skills in a familiar environment. Involving the family, so that they understand the value of the equipment and the functional benefits for their child to participate in their environment, helps to assure success.
- 6.
Having a back-up access system is important to always allow the child the ability to participate. If a child is using a head mouse on their communication device, it is important to have a manual eye gaze board so that they can give quick responses. When the child is having significant medical issues or “bad body days” and is unable to access their typical system, having a low-tech system as a back-up will still allow the child to participate.
Defining access
The term “access” has been widely used in the assistive technology industry. Assistive technology is defined by Public Law 100-407 as “any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase or improve functional capabilities of individuals with disabilities.” Access refers to how the child is able to physically interact with and control his or her environment despite physical or cognitive deficits. This is often accomplished with assistive technology, thus the term access often refers to the method the child uses to control the assistive technology. There are 2 important terms to understand when evaluating for access: the control site and the control interface. The control site is the anatomic location or body part the child uses to physically activate the interface (switch, joystick, or adapted mouse), whereas the control interface is the hardware that controls the device. The control site can be any anatomic location, for example, a hand, head, or index finger. The control interface may be a joystick, computer touch screen, custom keyboard, head mouse, or switch, to name a few. The general term “access” refers to the control site and the control interface, which, in combination, allow the child to interact with the assistive technology device and participate in the environment. For example, the child is physically able to extend their arm and hand (control site) to hit a button (interface) to open an automatic door (assistive technology device). Another example would be a child using her head (control site) to hit a switch (interface) to activate a computer program that reads a page of a book (assistive technology device).
When evaluating for access, a hierarchy of anatomic sites is recommended. Hands and fingers are always the preferred anatomic site because of natural preference and their ability to manipulate objects with fine resolution and precision. The head and mouth are typically considered next because of the ability to use control interfaces that provide greater precision and control over devices, such as the head mouse, light beams, eye gaze, and mouth joysticks. The foot is a potential site when the child is unable to accurately use his or her hands, and it is likely that the feet can achieve fine resolution and range to control devices, such as a keyboard, mouse, or joystick, thereby providing accurate control of the devices. Generally the least physically affected body part or movement pattern, that is, the part of the body with movement over which the child has the greatest control, is preferred for access. The optimal control site or location is identified by thorough evaluation of the child’s gross and fine motor control and functioning and is part of a more comprehensive multidisciplinary evaluation.
Defining access
The term “access” has been widely used in the assistive technology industry. Assistive technology is defined by Public Law 100-407 as “any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase or improve functional capabilities of individuals with disabilities.” Access refers to how the child is able to physically interact with and control his or her environment despite physical or cognitive deficits. This is often accomplished with assistive technology, thus the term access often refers to the method the child uses to control the assistive technology. There are 2 important terms to understand when evaluating for access: the control site and the control interface. The control site is the anatomic location or body part the child uses to physically activate the interface (switch, joystick, or adapted mouse), whereas the control interface is the hardware that controls the device. The control site can be any anatomic location, for example, a hand, head, or index finger. The control interface may be a joystick, computer touch screen, custom keyboard, head mouse, or switch, to name a few. The general term “access” refers to the control site and the control interface, which, in combination, allow the child to interact with the assistive technology device and participate in the environment. For example, the child is physically able to extend their arm and hand (control site) to hit a button (interface) to open an automatic door (assistive technology device). Another example would be a child using her head (control site) to hit a switch (interface) to activate a computer program that reads a page of a book (assistive technology device).
When evaluating for access, a hierarchy of anatomic sites is recommended. Hands and fingers are always the preferred anatomic site because of natural preference and their ability to manipulate objects with fine resolution and precision. The head and mouth are typically considered next because of the ability to use control interfaces that provide greater precision and control over devices, such as the head mouse, light beams, eye gaze, and mouth joysticks. The foot is a potential site when the child is unable to accurately use his or her hands, and it is likely that the feet can achieve fine resolution and range to control devices, such as a keyboard, mouse, or joystick, thereby providing accurate control of the devices. Generally the least physically affected body part or movement pattern, that is, the part of the body with movement over which the child has the greatest control, is preferred for access. The optimal control site or location is identified by thorough evaluation of the child’s gross and fine motor control and functioning and is part of a more comprehensive multidisciplinary evaluation.
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The Adult with Cerebral Palsy: A Provider-Consumer Perspective
Bone Density in Cerebral Palsy
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Parent–Professional Partnership
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