Choosing the Right Communication Device for Your Child with Cerebral Palsy
By Lee Vander Loop
CP Family Network Editor
For many children with cerebral palsy, communication is a struggle. Some may have a limited ability to learn and understand speech due to cognitive impairment. Others may have difficulty speaking clearly because of motor issues that result in poor control over their tongues, lips, and mouths.
Although children vary in language development, there are certain speech milestones that indicate if a child is on track in this area. Any child not meeting these goals should be tested for speech or hearing problems.
Children with hearing impairments may experience difficulties with speech since they can’t hear to mimic sounds in their environment. A child normally reacts to sounds starting from birth, and begins looking in the direction of sound between 4 and 6 months of age. Any infant who doesn’t seem to react to sound should be screened for hearing problems.
A number of techniques and devices have been developed to help children with severe speech impairments to communicate. Augmented and alternative communication (AAC) devices and strategies range from low-tech approaches using pictures, to high-tech systems that use computer software to generate speech.
Although some parents may fear that introducing technology will deter their child’s motivation to attempt speech, research has found that AAC technologies have significant positive benefits for children with complex communication needs with a range of developmental disabilities, including gains in turn taking, requesting, commenting, and expressive vocabulary.
How Does a Parent Choose the Best Option for Their Child?
With the mind-boggling amount of information on the internet involving augmentative communication, assistive devices, and brain-computer interface (BCI) technology, how can a parent determine what intervention or technology is appropriate for a child with cerebral palsy?
The first step is to talk to your child’s pediatrician about what resources may be available locally or in a nearby city. Many large teaching hospitals and rehabilitation hospitals offer evaluation and help with choosing an AAC system that will best suit your child. They may offer an assistive technology clinic. The best of this type of facility will:
- Offer a team of professionals made up of specialists in AAC, speech pathology, occupational therapy, and physical therapy, who will work directly with AAC technology vendors to provide services to your child. Importantly, they will work under one roof, not only because this makes it more efficient for you and your child, but also because this will make it more likely they will be communicating effectively with each other.
- Match and customize any AAC system or device to meet your child’s abilities and needs.
- Assess your child’s practical options, including computer access and environmental control issues.
- Evaluate any seating and power mobility issues associated with a communication system. This service often involves a wheelchair, occupational/physical therapy evaluations, and recommendations.
- Provide the proper training on the device for both you and your child. Studies show that simply knowing how to operate the device isn’t enough to ensure improvement in conversation. For this, a child must have direct conversational treatment to ensure they are engaged in conversation on a regular basis. Parents can be trained to initiate and encourage this kind of interaction.
A World of AAC Options for Children with Cerebral Palsy
It’s truly amazing what science has achieved in this field in the last decade. Many laboratories are developing brain-computer interface systems that provide communication and control capabilities to people with severe motor disabilities, including cerebral palsy. Brain-computer interfaces can translate brain activity into signals that control external devices and can provide communication and control capabilities to people with severe motor disabilities. For a look at examples of educational tools and games using this technology, visit NeuroSky.
Speech generating devices, known as voice output communication aids (VOCA), are electronic systems that enable people with severe speech impairment to verbally communicate. These systems can be installed onto existing laptops, desktops, or PDA systems. One notable user of a speech generating device was Dr. Stephen Hawking, the world’s foremost theoretical physicist. Hawking, who was unable to speak due to severe disabilities, used a DECtalk DTC01 voice synthesizer for several years and had come to be associated with the unique voice of the device.
What’s New in the Field Today
There is insurmountable evidence that the quality of life for people with severe motor and speech disabilities is being positively impacted as a result of these amazing new discoveries in the field of assistive technology and alternative/augmentative communication. Here is an overview of some of the newer AAC devices on the market today, according to their websites:
- tobii dynavox SC Tablet is a tablet-based speech generating device for communication and computer access on the go. The SC Tablet is an iPad-based speech generating device pre-installed with a suite of AAC apps for people with communication impairments. Easy to carry, with a built-in handle and stand, this durable device has a fitted case to withstand drops, complete with crash corners and a screen-protecting frame.
- Eyegaze Edge is the world’s most advanced eye-driven tablet communication system. A special eye-tracking camera mounted below the screen observes one of the user’s eyes. Sophisticated image processing software analyzes the camera’s images 60 times each second and determines where the user is looking on the screen. Nothing is attached to the user’s head or body.
- tobii dynavox I-Series is the lightest, fastest, most durable speech generating device yet. I-Series can be controlled completely with your eyes. It’s made for people with conditions such as cerebral palsy, ALS/MND, Rett syndrome, or spinal cord injury.
- tobii dynavox I-110 is an ultra-durable speech generating device built for communication on the go. This touchscreen tablet enables people who cannot speak to break boundaries, without breaking their device. The I-110 comes with a full range of communication software solutions pre-installed.
- TextSpeak talking keyboard converts typed text directly to speech. Designed for vocally impaired and speech-limited persons of all ages, TextSpeak is powerful and easy to use. Perfect for speech-impaired individuals, post operative patients, or as a health product solution for anyone who needs an affordable device that generates synthesized speech.
- Forbes ProSlate™ Series iOS-based speech generating devices are the first of their kind, capable of handling all of your communication needs by utilizing the latest and greatest of any AAC app.
- Forbes Winslate\™ Series devices use seamless Windows integration, helping users communicate in person and with Skype, email and texting*. The WinSlate Dashboard™ language system incorporates both symbol- and text-based grids to best fit your unique communication needs. WinSlate devices are accessible via gyroscopic head mouse, switch scanning, direct selection and eye tracking—the optional Enable Eyes® module uses the most state-of-the-art eye tracking available today. *Requires Feature Unlock Key (sold separately)
- Forbes Winslate for Kids™ With Enable Eyes® was created just for kids. Its powerful hardware and software platforms allow users to explore and have fun while learning eye tracking behind the scenes. The state-of-the-art Enable Eyes module boasts superior motion tolerance, making it a great fit for many children who may have been unsuccessful with other eye tracking devices.
- Emego is an innovative new electromyography (EMG) switch that uses the very small electrical signals from limited muscle activity to wirelessly trigger electronic assistive technology equipment (eAT). Simply put, Emego will enable communication through the twitch of a muscle. Designed for people with severe disabilities such as motor neuron disease (MND), spinal muscular atrophy, spinal cord injury, and brain stem injury, Emego is helping people to use their voice through AAC software and environmental control. It’s easy to set up and works like a standard switch.
- NeuroNode Trilogy is the latest system from Australian-based company Control Bionics. NeuroNode Trilogy is a 3-in-1 solution for those living with paralysis and loss of speech. Combining touch control, eye control, and NeuroNode 3.0 control, the NeuroNode Trilogy is the solution that fits the user’s needs as they change. At the heart of the NeuroNode Trilogy is the NeuroNode 3.0, the latest generation of the world’s leading wearable EMG control device.
- GridPad Trilogy offers touch control, eye control, and NeuroNode™ 3.0 control within the same system. The GridPad Trilogy is a unique 3-in-1 AAC device that progresses and grows with clients and their abilities.
Funding for AAC—Defining Medically and Educationally Necessary Services
When applying for funding for communication devices and services for your child, it is important that the documentation clearly justifies the choice of device/service. The educational versus medical necessity component becomes important as it relates to responsibility for funding the device/service.
Devices and services are deemed educationally necessary when they allow the student to benefit from a free, appropriate public education in the least restrictive environment. Insurance companies have no obligation to pay for services/devices that enable a child to pursue educational goals. Public schools must pay for services deemed by the special education team to be educationally necessary, regardless of whether they also meet the medical necessity definition. The Individuals with Disabilities Education Act of 2004 (IDEA 2004) specifies that special education services should enable students to access, participate in, and demonstrate progress with respect to the general education curriculum. Communication devices can be listed on the Individualized Education Program (IEP) as special education, related services, or supplementary aids and services. Because assistive technology is one of the “special factors” that IEP teams must consider for all children, IEP teams are obliged to discuss communication devices and services when a child’s communication limitations are so significant that they impact the child’s access to, and potential to benefit from, the general curriculum.
Medical necessity is claimed when the communication limitation arises from a diagnosed condition with some sort of medical basis. Communication devices/services are medically necessary when the diagnosed condition impairs the individual’s ability to communicate effectively. Speak with your child’s physician, who can assist you by writing a letter of medical necessity, which is often required by insurance companies, government agencies, or other funding sources for a particular medication, therapy or assistive device.
Show the insurance company that there is a real need for this tool and it’s not just a toy. If you get denied the first time, apply again. If you get denied a second time, get a letter of rejection that you can provide to charities or in grant applications that request it.