Telepractice: Seeing is Believing for People with Down Syndrome

I began using teletherapy out of necessity. Now I use it for better outcomes. As a speech-language pathologist I specialize in speech, language, and oral feeding for those with the diagnosis of Down syndrome. I have dedicated the last 10 years of my career to helping those with motor speech disorders be better understood when using oral language and improve feeding development and safety. Understanding and identifying learning strengths and relative weaknesses has led me to develop strategies and identify environments that foster learning as well as speech and language success. The two strengths or preferences I use most are visual learning and personally relevant meaning. Assuming the absence of severe visual or auditory impairment, people with Down syndrome learn best when they can see what is being taught auditorily. For example, an activity on an iPad or computer screen will be more enticing than a lecture without visual references. Research is also showing that information presented visually is remembered better for immediate and later use.  The combination of visual, auditory, and meaningful content creates a therapeutic model that appeals to people with Down syndrome. Or anyone, really. We all learn better when multiple teaching styles are presented and when we like and identify with the content as well as the context in which it’s taught.

Benefits of Telepractice for those with the diagnosis of Down syndrome when targeting motor speech and short-term memory:

High Interest

Initially, technology is very appealing due to its associated use for entertainment and communication with distant family and friends. It also allows the client/patient to see their own face on the screen while viewing their communication partner in real time. Successful therapy combines interest and motivation to achieve high repetition of tasks needed for motor speech practice. Because technology is more appealing and can be tailored to individual interests and abilities. It provides an environment that remains authentic (usually at home or school) and stimuli materials lends itself to the repetitions for tasks used in the medium of video through the use of real pictures and videos set to specific quantity of repetition tasks. direction in less time easier than traditional worksheets and testing materials. Tasks without personal meaning or familiarity often result in refusal behaviors commonly mistaken as a result of difficulty when, more often, they are due to the level of interest and poor past performance. A few corrections for doing part of a task wrong or saying a sound improperly can be enough to create a pattern of refusal and poor confidence in future tasks.

Caters to Learning Strengths

Those who learn best from repetitive visual presentation (e.g., discrete video modeling) learn and master skills faster when picture and video is used in conjunction with spoken language for comprehension and memory. Other factors such as high repetition of tasks (predictability and mastery), personally meaningful content (interactive games and activities can be easily tailored to personal interests), authentic environments (home, school, etc.), and shorter and more frequent sessions allow for evidence-based practice recommendations for those with motor speech disorders.  Oftentimes, real-life demonstrations aren’t as effective because they represent one moment in time.  Sessions can be recorded for multiple reviews and homework and parent/caregiver tips can be imbedded in the recorded sessions for more efficient review at home and outside of “therapy.”

More Efficient and Evidence-Based

The recommendation for shorter and more frequent sessions for those with motor speech disorders such as Childhood Apraxia of Speech, fluency, and voice disorders, etc. are often not possible for families and therapists to implement due to time, travel, and cost. Telepractice, however, can reduce those barriers and offers additional billing options. Consecutive repetitions of spoken utterances is often difficult in play therapy and language rich models and is often confused with more appropriate speech interventions. Teletherapy allows for simpler focus of stimuli and fewer distractions, leading to predictable session expectations and high rates of success experienced by the client.  Cancellations due to illnesses, vacations, weather, busy schedules, etc. are fewer when travel and health are no longer common factors affecting attendance and skill progress and maintenance. It also allows better access to specialists who are highly trained in specific areas.

Video modeling, a technique using a video demonstration to encourage skill acquisition and maintenance, has been used widely to teach thousands of skills through watching and listening to others as they learn, master skills, and finish tasks. Children and adolescents learn best from their peers and will talk, play, learn, move, and even eat better when with peers or by simply watching them. Programs like Copy-Kids (copy-kids.com) and Gemiini (gemiini.org) use Discrete Video Modeling to improve speaking and eating abilities. Some studies found learning simple tasks, like making a sandwich, were learned independently by watching a video demonstration of the skill being performed. In addition, the effects last well beyond the session of watching. Skills watched have been noted to have a latency effect that promotes use of the skill 10-14 hours after it was viewed.

Visual communication systems such as sign language, picture exchange systems, and Augmentative and Alternative Communication (AAC) voice generated devices are used to supplement or replace spoken language. These are somewhat successful because they access the person’s strengths of visual and kinesthetic learning to supplement speech clarity problems and support language skills. Telepractice can incorporate these alternative communication strategies along with practice of spoken language as easily as in-person therapy sessions. Privacy compliant platforms provide screen sharing and video demonstrations so joint activities can be used. Screen sharing allows for shared visual activities and lets the client see the provider and themselves on the same screen. This is reported to be one of the best features for children with Down syndrome who particularly like looking at themselves and faces in general. Sessions can be recorded to view later by the client (watching oneself doing a task well or learning how to self-monitor a skill or behavior) or sent to family, friends, providers, etc. to encourage team collaboration and parent-therapist relationships. Therapists can review sessions for report writing, data tracking, research and teaching purposes, and can even record verbal instructions for clients and caretakers that are more detailed than written instructions.

Teletherapy can also prevent and eliminate some undesired behaviors experienced in longer, child-directed, and play-based therapies. Sessions should be very simple with one to three goals that are targeted each session with a high frequency of repetitive practice. Updated or new goals are added only when mastery is achieved. Children love watching shows, movies, books and listening or singing with music over and over at a frequency maddening to adults. Those with Down syndrome are no exception. Many seem to find extreme comfort in repetitive tasks and tend to demonstrate new skills best when mastered. More often than not, we push the performance of skill or knowledge before the child or adult is ready, resulting in wrong answers, refusal behaviors, and presumed loss of skill. Wrong answers or loss of knowledge/skill are often symptoms of confusion, guessing to please another, and moving on too fast. Rarely is skill lost, however. It may just need to repeat in different contexts with fewer additional demands. While the ability to opt out or refuse to participate remain, even in teletherapy, it is reduced dramatically when sessions are short and predictably repetitive with minimal distractions.

Specialty and Bilingual services are easier to acquire thanks to telehealth and telepractice. Services are not as dependent on location as they used to be. The time and cost associated with specialty services are quickly being eliminated with the emergence of better technology and billing options. Bilingual services continue to expand but are still not representative of the populations that need bilingual services. Telehealth is being utilized to address the shortage of SLPs and bilingual SLPs in schools, hospitals, clinics, and early intervention with great success. 

Most services for those with Down syndrome tend to cater to children. While this is extremely important for every child with Down syndrome there is also exciting work being done for adolescent and adult populations. Age expectancy has improved dramatically thanks to medical research and practice and most people with Down syndrome will live into their 60s or more. Unfortunately, therapeutic speech and language services have not advanced as quickly. For the first time in my career I am doing more work for older persons than children. Each week we learn better ways to offer services and improve skills that promote independence and improve quality of life for those with Down syndrome. Telehealth is extremely important for this population because there are very few professionals or clinics with speech and language services dedicated to teens and adults with Down syndrome. Bilingual services for this population is also dire. We have begun doing community outreach programs targeting independence skills such as speaking, reading, technological communication, shopping, and cooking. We are also incorporating programs, groups, and clubs to target daily life skills such as communication using computers, tablets, and phones. Most teens and adults are not using these devices appropriately or at all despite having access to each. Successful independence is hinges on two things: speech clarity and/or access and use of communication technologies and the ability to manage the tasks of daily living.

For more information about how teletherapy services are working for those with Down syndrome, please contact me!