Prescribing Assistive Technology: Focus on Children With Complex Communication Needs: Clinical Report Free

Data from the recent 2021–2022 National Survey of Children’s Health indicated that nearly 10% of children age 3 to 17 years had speech or other language disorders.¹ Conditions that can cause impairments in communication include cerebral palsy (CP), autism spectrum disorder (ASD), congenital anomalies, deafness, intellectual disabilities, brain injuries, severe speech disorders (eg, dyspraxia, childhood apraxia of speech), and genetic syndromes (such as Down syndrome or Rett syndrome). For these conditions, if speech or verbal language is absent or extremely limited, then a complex communication need (CCN) exists, and the affected child may benefit from augmentative/alternative communication (AAC) systems. If the child has a congenital or early life cause for a CCN, then habilitative treatments are needed. Those with CCN occurring later in life (eg, after a brain injury) will need a more rehabilitative approach to treatment. These treatment methods are often the same or similar. Unfortunately, some insurance companies will only provide payment for rehabilitation services.

Severe limitations in cognition (eg, intellectual developmental disorder) and/or social communication (eg, ASD) can also affect the ability to express oneself. However, since it has been shown that the use of AAC does not prevent or limit acquiring verbal language, it is important for those with severe to profound cognitive and/or social disabilities to be offered some AAC therapeutic interventions as a way to possibly improve functional communication skills.^2,3 There are not prerequisites to the evaluation for and use of appropriate AAC for any child (or adult) who could benefit from AAC, which is in accordance with the American Speech-Language-Hearing Association (ASHA) position statement on access to AAC⁴ as well as the “Communication Bill of Rights” from the National Joint Committee for the Communication Needs of Person with Severe Disabilities (NJC).⁵ 

Children who have severe communication impairments and CCN should be able to anticipate a degree of independence in adult life. AAC can offer the possibility of an occupation that is personally rewarding and results in academical, social, and medical benefits. AAC gives children with CCN the ability to express themselves, allowing them to develop other communication-adjacent skills that can set them up for adulthood with some autonomy. Using AAC may permit increased rates of employment that would otherwise be unavailable; contemporary vocational opportunities are increasingly accessible to adults with physical and communication disabilities. Jobs like editing, writing, and computer applications do not depend on speed of output as much as good judgment and reasoning abilities. Success ultimately depends on quantity and quality of the tools and trainings provided in childhood, such as AAC, and not on prerequisite skills. Even older children with severe functional communication deficits can benefit from AAC intervention that may not have been accessible or needed in their early years, particularly relevant for those children with acquired deficits (eg, brain injuries).

Societal barriers may further limit children with already extant communication impairments. Children who are marginalized by the consequences of racism and poverty have more difficulty accessing care to improve communication.⁶ Overall, 24.5% of caregivers of children with a communication impairment report unmet need, but this increases to 29.1% when the children are Black.⁶ On the basis of this report by Black et al, children with communication impairment also received inequitable health insurance coverage. Families of children with communication difficulties are less likely to report that their child’s health insurance was adequate and also less likely to receive care in a medical home.⁶ Even middle class families with incomes between 200% and 299% of the federal poverty level reported difficulty getting access to appropriate devices; 31.3% of children in these families reported unmet needs for their children who require communication aids/devices.⁶ The literature on AAC is lacking with regard to children who do not speak English as a primary language but reside in an English language-dominant culture; this may adversely impact access to necessary AAC and trainings. For all children, regardless of primary language or dominant culture, intervention should be culturally responsive. Limited studies in neurotypical children seem to indicate parity between comprehension of Spanish and English on commercially available augmentative communication devices, although this finding cannot reliably be extrapolated to diverse populations.⁷ In addition to the issues related to minoritized race, ethnicity, and socioeconomic factors, those children who live in rural areas and who have minimal verbal or nonverbal ASD or other similar disorders also have trouble accessing AAC and related therapy services.⁸ For decades, rural school districts have had increasing difficulty recruiting teachers and related staff, including special education teachers and therapists.⁸ Poorly resourced rural school districts are often the only programs that are providing help to address a majority of the interventions and referrals needed. In these rural areas, students and families have needs for which they are legally entitled, but in these rural communities there is limited student access to appropriate devices and expertise. As many rural area populations decline, the lack of trained special education teachers and therapists may limit availability of AAC for children with CCN unless access to other interventions (including outpatient services or telehealth) are improved.⁹ 

Medicine, as a whole, has a long and enduring history of ableism.¹⁰ In the pursuit of wellness and health, there is an inappropriate and dangerous emphasis on normalcy.¹¹ This emphasis has the effect of marginalizing already vulnerable groups. As Iezzoni states eloquently: Ableism is “rooted in perspectives that characterize disability as ‘abnormal’ or an individual problem requiring treatment of cure – as opposed to perspectives that acknowledge disability as a normal part of human diversity.”¹² Ableism can apply to patients with ASD, CP, and chromosomal disorders, among others. Historically, people with expressive language deficits have been equated with having cognitive or intellectual deficits. Those with cognitive or intellectual deficits often are perceived as less than worthy of attention and care. It is vital that physicians recognize whatever implicit biases they may harbor, acknowledging that diversity is desirable in all its forms. It can feel overwhelming to address these complex issues, but abdicating this duty to others is its own form of ableism we must combat. It is the authors’ fervent hope that we may guide the reader to resources that will aid all physicians in the care of patients with CCN.

CCN spans many clinical groups beyond isolated communication impairments including those with genetic, congenital, and acquired disorders. Sixty percent of children with CP are estimated to have some difficulty in communication¹³; a more recent cohort study revealed 85% of 2-year-olds with CP had significant impairments in speech and language.¹⁴ Children with Down syndrome have also been shown to have significant impairments in expressive language and speech development compared with their peers, even after adjusting for degree of intellectual developmental disorder.^15,16 Approximately 30% of children with ASD who do not have severe intellectual developmental disorder have CCN.¹⁷ Children with a diagnosis of severe intellectual developmental disorder without other developmental disabilities also have a high prevalence of speech and language disabilities.¹⁸ 

Assistive technology describes “any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of an individual with a disability,” as defined by the Individuals with Disability Education Act (IDEA) and the Assistive Technology Act of 2004.¹⁹ Types of assistive technology may include commercial products or accessibility features in products like assistive listening devices (closed captioning software or amplifiers), durable medical equipment including mobility aids (wheelchairs), and speech-generating devices (SGDs) or visual aids (screen-reading software).

The use of an AAC device is another example of assistive technology. While the terms augmentative and alternative are often used interchangeably, they are distinct terms. AAC is augmentative when used to supplement existing speech, and AAC is alternative when used in place of speech that is absent or not functional. For the purposes of this report, the term AAC will refer to any device or system that is used to improve the ability of a child to communicate.

AAC is often erroneously thought to refer only to complex electronic devices. Although these advanced devices may be the most appropriate choice for some children, these should be carefully selected on the basis of individual patient needs. Access to powerful technologies has improved for children with complex communication needs, in part because of the widespread availability of mobile technology. The prevalence of said technology has also driven down costs, thus permitting its greater availability for children with limited resources. Other technological advances have also improved access for those with severe motor impairments.

The costs for AAC vary widely depending on the level of complexity and whether or not mass-produced items (like touchscreen tables) are a major component of the device. Although many low-tech and mid-tech AAC solutions are available to assist children with complex communication needs, this report focuses more on high-tech devices, because primary care physicians (PCPs) are sometimes asked to prescribe and approve the use of these more expensive devices.^20,Table 1 describes examples of the variety of AAC currently available. Low-tech strategies describe aids that do not require the use of batteries or electricity. They may include the use of objects, line drawings, and actual photographs or pictures of objects or persons to replace or augment spoken words. Low-tech AAC also includes systems such as lists of words, phrases, or symbols that can be easily understood by others in many environments. Some low-tech options include communication boards, communication books and pragmatic organization dynamic display (PODD). For children with visual impairments, 3-dimensional objects or supports can be substituted for pictures to provide tactile input. Picture Exchange Communication Systems (PECS) is one example of a low-tech intervention program for individuals with ASD and other developmental disabilities that is intended to shape a child’s expressive communication abilities using prompting and reinforcement strategies. PECS is a specific approach with specific implementation parameters, based on applied behavior analysis, and consists of 6 progressive instructional phases.”²¹ Exchanging pictures with a partner to request something (eg, PECS) or using paper communication boards or “flip-books” of familiar images can be quite effective in face-to-face communication. These systems can also be quickly and easily employed in the hospital setting. For children who have visual impairment, 3-dimensional objects that can be felt may be substituted for pictures.²² 

Simple communication boards can be accessed through direct selection or partner-assisted scanning (Figures 1 and 2). In direct selection, the child directly touches or points to the desired target (eg, word, symbol). In partner-assisted scanning, a communication partner goes through showing the available choices until they are stopped by a response from the child (such as an eye blink or signaling device or switch).

Mid-tech devices are typically battery-operated portable voice output storage devices or devices that produce printed text. Devices can store a few recorded or digitized messages, such as “I want to see a movie” or multiple levels of messages. An example of this is the “sequencing communicator” whereby pushing buttons on the AAC device allows a child to have a story read to them as they follow along with a picture book. The stories or messages are typically recorded and changed by the communication partners on the basis of each specific activity. When the desired button is accessed, the recorded message plays. Most mid-tech devices are accessed only through direct selection, using touch, switch access, or a pointer to choose a target.

Low- and mid-tech communication systems have inherent limitations. Vocabulary is limited by what is pictured or stored; therefore, lengthy, novel messages are not feasible. Communication is usually slow and is often more scripted than spontaneous or independent. Mid-tech devices require preprogramming of messages created and managed by a communication partner or caregiver before the activity or may rely on “factory default words” that are already in the device. They may be difficult to use and, thus, inappropriate to use with persons who have fine motor impairments, such as those who have CP or other movement differences.

High-tech AAC devices are electronic devices that have the capacity to store and retrieve messages (Figure 3). Most now have synthesized speech output, allowing the listener to easily receive the message. These are known as SGDs or voice output communication aids (VOCAs). Given the advances in technology, some high-tech AAC devices can be used for more than communication and can now be additionally used with email, word processing or other computer software, or environmental control units. Commercial insurance, however, may not cover high-tech AAC devices that are used for more than communication but may cover AAC software for a privately owned device. SGDs produce voice output by using either digitized recordings of natural speech or the creation of synthesized speech, with the latter allowing for more novel messaging by the user. Unlike mid-tech devices, high-tech devices usually feature a dynamic display that changes with the input so that many levels of symbols, words, or lengthy messages can be stored for quicker retrieval. This improves both the variety of potential vocabulary items and independence in communication. Symbols are displayed on the device in categories such as emotions, objects, actions, people, and concepts. They can be displayed as words, drawings, or photographs, depending on the developmental needs of the child. The needs of the child should dictate the features necessary for system and vocabulary recommendations. With these devices, the user selects a symbol, triggering changes in the set of symbols displayed. This process expands their ability to communicate a novel and often longer message. Symbols are typically placed in a grid with the size and number of the symbols dependent on the child’s visual abilities, communication and cognitive skills, and motor control after a comprehensive AAC evaluation.

Over the last decade, there has been an emergence in the use of visual scene displays (VSDs). Rather than using a single symbol to represent an object or person, a VSD can represent a natural life event (eg, a changeable video of a family having a picnic), which can provide a greater context for the child to communicate their message. VSDs can be static or dynamic through the use of preprogrammed videos.²³ VSDs are an additional feature of some vocabulary systems and require programming by a familiar communication partner or professional to support individual needs.

High-tech devices typically have the capability of having multiple access (input) methods ranging from direct selection on a touch screen to various types of scanning, mouse/joystick controllers, or encoding systems. Encoding systems use a simpler set of movements such as a series of eye blinks to represent a longer communication. Some computer-based devices can be accessed via eye gaze. For children who have both severe communication and physical disabilities, these alternative access methods are often needed. Systems that allow direct selection (eg, with a finger) are used with children who have adequate control of movements.

The advantage of high-tech SGDs is their expandability, flexibility, and mobility, especially those that incorporate commercial touchscreen tablets. For children whose communication skills are improving over time, the vocabulary in the SGD can be modified to accommodate the changes to language development and communication needs of the child. Thus, the skills of the child and capability of the device work in tandem and promote communicative proficiency throughout the continuum of care.

As an example, for a child who has ASD but is being limited in communication by using the PECS and low- or mid-tech supports do not meet their expressive communication needs, evaluation for high-tech AAC or SGD is recommended.^24,25 Persons with fine motor impairments may have difficulty accessing hardware connections, and more sophisticated switches may not be able to be used. It is critical that the team include a variety of professionals including occupational therapists (OTs), physical therapists (PTs), assistive technology professionals (ATPs), and speech-language pathologists (SLPs) to identify all the needs of the patient to make the best recommendations for switch access or other access modifications to operate the equipment.

High-tech electronic devices are often constrained by their need for a power source, limiting their usefulness in situations in which battery power gets depleted. A lower-tech solution (such as a word or picture board, a set of pictures or phrases on a ring, or other simple devices) should always be available as a backup for high-tech AAC system users. People who have typical language ability and speech are accustomed to a high rate of expressive speech. Therefore, patience and training are necessary to communicate with an individual who is using an AAC system. Patience and training are particularly important if the child is using a low-tech communication aid, such as a symbol, letter, or word board.

Prior studies have demonstrated the benefits of early intervention for speech and language disorders, including using augmentative systems, such as pictures or sign language.²⁶ Furthermore, research has shown that the use of AAC systems does not decrease the use of natural speech and may promote an increase in verbal expression expertise, which should provide reassurance to physicians and families.²⁷ Multiple systematic reviews and controlled research studies have definitively shown that the use of AAC has not decreased the vocabulary for children with minimal expressive vocabulary; in most cases, AAC use has helped to increase their vocabulary.^28,29 At least one review has also shown evidence of additional improvements in receptive language with the use of AAC.³⁰ A recent systematic review including studies published in the last decade demonstrated that AAC improves communication (particularly vocabulary) in pediatric AAC users ages 6 to 10 years with various diagnoses.³¹ Most of these studies have been conducted with children with ASD and sometimes show improvements in social interactions in addition to increased vocabulary.³² 

AAC use has also been evaluated in children with other disorders and disabilities that cause CCN, including Down syndrome, craniofacial disorders, intellectual developmental disorder, childhood apraxia of speech, severe dysarthria, deafness/hard of hearing or deaf-blindness, and CP and similar motor impairments.^33–38 Some children with ASD develop expressive language through gestalt language processing or scripts, which is a type of language development in which full phrases (scripts) can be memorized and used to communicate ideas before basic units of speech such as individual words or phonemes.³⁹ Developing competency in AAC can support all children who have unreliable expressive communication skills.

Currently, there is no consensus about the earliest age at which a child can successfully use a more complex AAC device (eg, an SGD), although some have demonstrated successful use of complex devices with children younger than 3 years^40–42 and even children as young as 9 months.⁴³ Experienced researchers Beukelman and Mirenda have demonstrated the need to study the process by which AAC devices for young children are selected and used.⁴⁴ Their research suggested that if a child with severe communication impairment is successfully using an AAC device by first grade, the child will more actively participate in their classroom settings. These findings were reinforced in more recent work in which young children who were skilled and comfortable with their AAC devices communicated more frequently with their typically developing peers.⁴⁵ Despite the results of these studies, additional research on early toddler age (12 to 18 months) use of AAC systems is needed to determine whether earlier exposure to communication aids will promote more ease of use and other gains (such as improved social skills and participation).

The assessment of a child with a communication disorder and the selection of AAC device(s) is usually performed by an SLP with a team of other trained and experienced professionals (eg, OT, assistive technology). Recently, there has been apparent success with parts or all of this assessment process being conducted virtually, using live 2-way internet access and telehealth, with the child at home or at a different location than the team doing the assessment.⁴⁶ Sometimes a child can have limited speech and is having behavior problems possibly attributable to these problems with functional communication skills. In these instances, it is important to determine whether or not the main cause for the misbehaviors is the communication impairments. Evaluations completed in the home can provide critical information that may support decision making but are not required to determine need for AAC supports.

The first and most important step in AAC evaluation is the comprehensive assessment of the person’s current functional abilities, environment, and personal preferences (Figure 4). The International Classification of Functioning, Disability and Health (ICF [Figure 5]) for children and youth developed by the World Health Organization can be useful in this process.^47,48 Using this system, one can identify assets and challenges that a person has related to their communication disability. ICF domains include “activities and participation” and subcategories such as “communication” or “mobility.” Further information about how the ICF system could possibly be used to address CCN can be obtained by reviewing the recent review by Griffiths et al from England or the tutorial developed by Westby and Washington.^49,50 

A team approach is often needed to properly evaluate both the child and devices and ensure the best match so that the device can be used effectively across environments and communication partners. Depending on the AAC device and the disabilities of the child, this team may include SLPs, OTs, PTs, assistive technology professionals, rehabilitation engineers, PCPs, subspecialists trained in the care of children with disabilities (pediatric physiatrists, developmental and behavioral pediatricians, neurodevelopmentalists, complex care pediatricians, or child neurologists), psychologists, special educators and other school personnel, child care workers, computer specialists, and others in conjunction with the child and family. In most circumstances, the major evaluator is the SLP. Final decisions for the AAC system are made among the family, the SLP and other team members. If a larger interdisciplinary team approach is needed/utilized, it follows that collaborative discussions among team members must occur. For all teams, the team members are expected to have appropriate training regarding evaluation but also provide training to the child and family members. Identified team members are tasked with monitoring the ongoing use of the device and problem-solve with the family if issues arise. The PCP could have an advocacy role to ensure that training and monitoring occur. Abandonment of a device is much less likely to occur when appropriate monitoring and timely assistance are provided.⁵¹ 

During the last 15 years, there have been increasing numbers of reports of methods that can improve and standardize the training of communication partners, that is, those persons who will be interacting with the AAC user, including teachers, therapists, parents, and siblings. These methods fall into the category of what has been labeled as “partner augmented input” (most commonly), “modeling” or “communication partner instruction in AAC.”^52,53 Evidence-based examples of these teaching methods include SMoRRES, ImPAACT, and an artificial intelligence-assisted automated system that was recently reported.^54–56 Additional research, dissemination, and training of trainers in these methods will likely lead to improvements in how AAC is used and accepted in the “real world” and possibly decrease abandonment of devices.

Children with moderate to severe physical and speech/communicative limitations require an experienced interdisciplinary team, as many of these impairments influence the child’s ability to use AAC.⁵⁷ Current and future language needs, motor abilities and deficits (including which movements the child can make consistently and whether/how these movements can be used to control a device), cognitive functioning, visual and auditory acuity, anticipated communication partners, environment, and mobility issues must be assessed in detail to determine the features that are necessary for successful AAC implementation. Using this information will help determine the most feasible output method. Output information may vary from a simple laminated card to displays on monitor(s), internet output or synthesized speech. Multiple output types are preferred, especially for those children who have more severe disabilities, as this allows for redundancy should one output fail.

The assessment process for AAC includes consideration of the entire spectrum of AAC (see Figure 4). A patient may need all communication options for all types of communication needs at various times. A dedicated SGD may be recommended, but the child should have access to other communication options during the lengthy waiting period for the prescribed technology. Technology may require repair, charging, or updating or may be unavailable. Low- and mid-tech supports can be included in the plan of care and as part of the comprehensive AAC evaluation.

The basics of the overall assessment process for assistive technology are shown in Figure 4. Steps are ideally repeated periodically as the child’s needs change and/or functional changes occur. These steps are outlined in a case example available in Box 1: Identifying the Potential Need, Gathering Information (ie, medical and other history), Capability Profile (Functioning) and Communication Assessment, Feature Match (matching a person’s strengths and needs to a device), Trials of Device(s), and Possible Therapies and Recommending Specific Device. The process culminates with Funding, Training, and Implementation (use) of the device. After implementation, ongoing monitoring, training, and guidance are important for communication and literacy development.

Baseline measurements of function, including cognitive testing, prior to introduction of AAC or assistive technology (AT) and at regular intervals (initially monthly) are essential. The SETT (student, environments, tasks, and tools) system is one framework that uses functional abilities to make assistive technology decisions and recommendations in the classroom environment used to gather this information.⁵⁸ This framework is primarily used in schools, and much of this system is available at no cost. Once a baseline is established, ongoing measurements of function can then determine whether progress is being made in distinct domains. Environmental modifications (such as modified wheelchairs, special switches, or other assistive devices) may influence these functional measures and should be accounted for when reporting results. Standardized language-assessment tests could be used to determine progress in communication abilities but may need to be adapted. Caution is advised when children participate in standardized or formal evaluation protocols while using AAC systems, because most standardized evaluations have not been developed with communication supports or devices in mind.^59,60 For school-aged children, the use of any AAC and speech/language services may be covered by a legal document, the individualized education program (IEP).¹⁹ Federal laws governing the IEP require re-evaluations every 3 years or as formally requested by the family or the school. Because of this requirement, if the family or school personnel do not feel that adequate progress using AAC is being made, a re-evaluation can determine actions that lead to improvements. In addition, if the child demonstrates new behavioral issues, it is important to ensure that whatever AAC device (if any) is being used that it is truly meeting the child’s current communication needs.

Using the aforementioned steps, the skilled and experienced SLP may select the device(s) that are most likely to meet the child’s individual needs on the basis of the child’s abilities and communication environments; assistance from other team members may be solicited. Ideally, the child should have a trial period with a rented or loaned unit of the intended device before it is ordered or purchased. A trial period (1- to 2-month) gives the child, family, and educators/caregivers the opportunity to be trained and assess the child’s ability to use the device in different settings, identifying the strengths and weaknesses of the system. These steps may reduce purchases of inappropriate devices. Partnering with a reliable technology center (especially at a university program, tertiary care hospital, or nonprofit organization, such as Easter Seals) is often useful, but these may be quite distant or have long waiting lists.^61,62 There may be some families who are uncomfortable with the more complex high-tech AAC devices because of lack of experience or access, and they may require additional instruction and training for the family. This additional family education may prevent abandonment of a device that meets the needs of the child.

Studies have demonstrated that assistive devices may be abandoned shortly after they are obtained in one third of cases; up to 75% of devices are never used successfully^63–65. Although there has been minimal research done on this issue, this high rate of abandonment may be, at least partially, due to lack of training and support for caregivers, teachers and other therapists in the child’s life.⁶⁶ 

When the child or family’s primary language is not English, it may complicate or impair successful uptake of AAC. Low-, mid-, and high-tech devices can usually be easily altered to different languages by labeling and programming of speech, but the paucity of therapists or teachers who are fluent in languages other than English limits their understanding of cultural and linguistic context essential for effective expressive communication. The physician or therapist who prescribes or recommends AAC can help alleviate this with assistance or advocacy for improved initial training for the child or caregiver as well as providing ongoing monitoring of the use of the device. This training is ideally provided in the native language by someone who knows the basics of AAC use, but an interpreter may also be utilized.

During the past 3 decades, methods have been developed to improve the successful matching of assistive devices to users (in adults, “matching person and technology”).⁶⁷ Similar methods have been used with children and adolescents.⁶⁸ In Figure 4, this is the step noted as “Feature Match.” If feature matching is well deployed, the best system or device and individualized training can be provided, leading to less chance of system or device abandonment.^50,68,69 

There are many tools and standardized measures available to assist in the process of evaluating the efficacy and performance of assistive devices, including AAC.^70,71 One 10-step framework includes input from caregivers to help professionals obtain assistive technology for young children.⁷¹ These tools are promising but are still in development. In children with motor disabilities such as CP or brain injury or malformation, the types of switches used to access AAC devices are crucial; recent work demonstrates possible pathways to assess these new tools.⁷² During the final steps in the assessment process, children needing AAC, no matter the severity, are ideally evaluated, trained, and observed by appropriate professionals using several selected devices, as subtle differences in devices may influence its successful uptake. The ultimate goal for using any AAC device is to achieve the highest possible functional communication.

Guidance through Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents (4th Edition) can equip the PCP to recognize pediatric communication disorders and make appropriate referrals.⁷³ Children at any age who are nonverbal or have unreliable intelligible speech are potential candidates for AAC. At present, there are many cost- and time-efficient ways to perform screening and surveillance of communication problems, including some clinical guidance from the AAP.⁷⁴ Knowing appropriate community resources and professionals for assistive technology is crucial. Children needing AAC systems require services for evaluation, procurement, training, and monitoring of devices and therapy programs. These services are ideally coordinated with existing therapies and educational programs while also being family centered. This integrative process can be confusing and overwhelming for the family, and it is within the role of the pediatric medical home to assist with and make referrals to all available resources.⁷⁵ Table 2 lists the 4 major components involved with coordinating care for children with communication disorders. Beyond providing medical home services for individual children, PCPs are also well poised to advocate on behalf of all of their patients and those children with communication disorders—specifically promoting and advocating that AAC and assistive technology, in general, is a covered service by Medicaid and other payers.

Although others may be involved in the child’s care team, the PCP is uniquely positioned to evaluate the child’s progress as well as the family’s satisfaction or dissatisfaction as the leader of the medical home. For specifics about providing care coordination and care management, the reader is directed to an AAP policy statement that provides additional information and resources.⁷⁶ 

When pediatric communication disorders are recognized, necessary referrals can be initiated by the child’s PCP. Children with communication disorders may be evaluated for AT needs as part of school-based, outpatient, or academic centers. When working with a public school system, the IEP may be utilized. According to the IDEA, AT provided in the school must specifically demonstrate a benefit to the child’s participation in the education setting.⁷⁷ Unfortunately, equipment purchased by the school is not always sent home with the child for use in the family and community settings. Conversely, a school should not ask for family or insurance funding to purchase educationally necessary AAC (or any other AT). However, if the device is even partially paid for by Medicaid, according to Medicaid rules, it must be made available at home for “educational purposes.”¹⁹ The need for the device would be recognized as “medically necessary” and require the support of the medical team. Unless the school itself fully paid for the device, the child and family can keep the device after the child leaves the school or graduates. If a child does have to relinquish the device (for example, during a transition to adult disability or vocational services), there are state vocational/rehabilitation services, insurance changes, and community-based waivers in most states that will often fund purchase of AAC and for trainings.

For infants and toddlers receiving early intervention services through their state, the funding of AAC may be problematic. Early intervention programs are run by the states with some general guidance and requirements provided by federal regulations. These federal regulations, however, do not specifically address the purchase of AAC for children enrolled in early intervention. Therefore, there are historically few state early intervention programs that purchase a high-tech AAC device for a child with CCN. In most states, picture communication systems and some mid-tech devices are frequently used, especially by treating SLPs.⁷⁸ Additional information about funding can be found in the Appendix and from the website of the ASHA (asha.org).

For AAC paid for by any type of health insurance, including Medicaid, the PCP may be asked to write a prescription and a letter of medical necessity for AAC. This prescription and letter is written after evaluations by an SLP and other professionals (OT, rehabilitation technology specialist) are completed. A written report from these professionals will be needed to supplement the AAC order. It is important for the physician to have documented the child’s communication needs and diagnoses, prescription, letter of medical necessity, and other supporting documentation in the medical record. Many electronic health records permit scanning of outside records to facilitate easier retrieval for the busy clinician.

In rural or other access-limited locations, it may be possible to have one or more evaluations performed by HIPAA-compliant telemedicine.^46,79 Especially since the COVID-19 pandemic, both the availability and the quality of these evaluations have improved greatly. For more information about who might perform these remote evaluations, PCPs or care coordinators may contact major universities in their state who have Departments of Speech/Language (or Communication) or find state-specific information for AAC specialists from the State Technical Assistance Programs (see Appendix). The ASHA (ASHA.org) maintains a list of certified speech-language pathologists (ie, CCC-SLPs). At this time in the United States there is no state or national certification as proof of “expertise” in AAC evaluation and treatment. Since the early 2000s, however, the ASHA certifies speech-language pathologists and verifies competency in AAC. A recent ASHA-certified SLP is, therefore, qualified to provide the necessary evaluation and interventions for AAC without additional state or national certification as proof of “expertise” in AAC. In addition, the American Board of Augmentative and Alternative Communication (see Appendix) is planning to offer additional distinct certification in 2024 for therapists who prefer to have it.

Reports from therapists, particularly from certified SLPs, can greatly assist the PCP in providing an appropriately detailed prescription. Information about the child’s current status and expected outcome after using the device may also be requested; this information is often part of the report from the speech-language pathologist. A letter of medical necessity for durable medical equipment is generally needed as part of prescribing an AAC device. A letter of medical necessity provides a detailed summary of evaluation reports and recommendations, concluding that the recommended devices are medically necessary for treatment of the child’s communication impairment caused by a specific diagnosis (eg, expressive speech impairment secondary to ASD). Insurance companies primarily use the listed International Classification of Diseases, 10th Revision, Clinical Modification (ICD-10-CM) codes detailed by the treating PCP as the major justification for the devices or services being requested. An insurance company may have medical necessity policies that define what can be approved on the basis of these codes and/or whether a device is considered rehabilitative or habilitative. Researching relevant insurance policies can assist the PCP in utilizing proper billing codes and diagnoses. If the PCP has access to in-house billing expertise or a care coordinator, these professionals may be helpful in this search process. It may be quite useful for the prescribing PCP to determine ahead of time about these specific policies and the billing codes related to them. Many AAC companies have hired “billing specialists” who can assist the PCP in obtaining this information from insurance companies. However, these “billing specialists” often have significant biases or conflicts of interest regarding what AAC equipment is needed. Table 3 presents a list of commonly necessary points to include in this medical necessity letter.

The AAP has defined medical necessity as “…health care interventions that are evidence-based, evidence-informed, or based on consensus advisory opinion and that are recommended by recognized health care professionals or organizations, such as the AAP, EPSDT services, and Bright Futures, to promote optimal growth and development in children and youth and to prevent, detect, diagnose, treat, ameliorate, or palliate the effects of physical, genetic, congenital, developmental, behavioral, or mental conditions, injuries, or disabilities.”⁸⁰ When justifying medical necessity for any assistive technology (including AAC), the Early and Periodic Screening, Diagnosis and Treatment (EPSDT) benefit standards may provide another authoritative source and help inform medical necessity determinations. The EPSDT’s medical necessity standards help ensure care, services, and treatments are commensurate with each child’s medical needs, including age-appropriate physical health, mental health, and developmental services across the pediatric continuum.⁸¹ If a health condition is discovered, EPSDT requires the state of a child’s residence to provide necessary treatment, although this provision may be neglected by some state agencies. Per EPSDT, states are required to provide all medically necessary services covered by Medicaid, regardless of whether those services are part of the individual state’s Medicaid program.⁸¹ 

Fortunately, in the last decade, there have been changes in coding and billing that allow the PCP to bill for care coordination activities including developing these prescriptions and letters. For example, chronic care and principal care management Current Procedural Terminology (CPT) services address both physician and clinical staff time spent coordinating and managing multiple or single chronic conditions respectively. Crucial medical home care coordination efforts by pediatricians and PCPs should be paid for by all third-party payers.⁷⁶ 

Technology advances quickly, and it is challenging for a physician to stay current with new developments. PCPs often endeavor to serve as informed advocates. Families of children with disabilities can have a variable understanding of AAC, ranging from low knowledge and some hesitancy to extensive knowledge and high expectations. Families may seek answers without support from health care professionals, which can result in inappropriate equipment and failure of AAC acceptance by the child. PCPs have an important advocacy role in this process by advising caregivers, patients, or allied health professionals and providing guidance. As such, PCPs can benefit from keeping informed about local resources and professionals who can help provide information about assessments and training.

Several accessible sources of information are described here, and others are in the Appendix. The National Assistive Technology Technical Assistance Partnership oversees the federally mandated but state-funded “assistive tech” projects. These state projects are excellent information hubs and can refer individuals to appropriate service providers. Various organizations for children with disabilities (such as the Council for Exceptional Children and others) have also developed services that can be used to obtain references and abstracts about many facets of disability, especially with regard to school-related services. There are increasing numbers of websites offering resources for using AAC and other AT with children. Clinicians and families should be wary, however, as some are thinly veiled advertisements from companies or groups that may propose “alternative therapies” that are not evidence based and could be harmful (such as the use of vitamins or other supplements at high doses with dubious claims about enhancing language or cognitive development). The ASHA website (www.asha.org) documents communication supports that are not evidence based and not recommended. Physicians, therapists, and families can reach out to ASHA for additional questions.

Children with communication disabilities can benefit considerably from AAC, as AAC can help maximize their developmental potential. Financial and societal barriers limit the equitable distribution and application of this technology. Much of the recent improvement in AAC devices can be attributed to organizations and companies addressing the principles of “universal design.” Universal design is defined as the development of structures or devices that are accessible to both able-bodied persons as well as those persons who have functional limitation, such as touchscreen tablet-based AAC.^82,83 Another example of universal design is the simple wheelchair ramp, which can be used just as effectively by a person able to walk and a user of a wheelchair.

Despite the increasing interest in universal design, some insurance companies and Medicaid/Medicare programs will only pay for “dedicated” (single-use SGDs), which may prevent the option of recommending tablets or laptops as the hardware for AAC devices⁸⁴ (see AACfundinghelp.com in the Appendix). This limitation may lead to problems with funding for an AAC device.

Schools are not bound by Medicaid or other health insurance rules, which has led to many AAC devices (especially tablet based) being purchased with school district funds. As mentioned before, schools that pay the entire amount for AAC should be encouraged to provide AAC devices for home use, but they are not legally bound to do so. Encouragement from professionals (including physicians) can help schools understand the importance of using AAC at home and promote acceptance of the device.

Universal design devices are often the ones mainly used for AAC in schools. At this time, the use of AAC in schools is primarily for those children with CCN. School systems also use AAC and other AT to support literacy and written communication needs for children identified with a disability. Only recently has there been any research in the area of AAC use for literacy teaching and improving receptive language skills.⁸⁵ For example, many mobile AAC devices use pictures or symbols on the screen that may be selected for voice output of words, phrases, and sentences. Future research is needed to determine how best to teach reading skills to young users of AAC devices. Advocacy for child literacy and communication is essential for all children; this is familiar territory for the PCP.

1. In alignment with the principles of the pediatric medical home, the PCP and other pediatric physicians and advanced practice providers should use recommended surveillance and screening methods with their patients to identify children with communication problems and then refer them for appropriate evaluations. The AAP has a clinical report to guide this identification and referral process.⁷⁴ 

2. If a child may benefit from AAC use, the PCP should ideally make a referral to a an SLP for an AAC assessment. Ideally, the SLP is either qualified in this area or can recommend other SLPs or programs with experience, particularly for patients who have complex needs. Other specialists (such as pediatric physiatrists, neurodevelopmental pediatricians, developmental and behavioral pediatrician, complex care pediatricians, or child neurologists) can assist with identifying SLPs or clinics with expertise if needed. The SLP’s AAC assessment report will then support the written durable medical equipment prescription and medical necessity letters.

3. As a part of providing care coordination in the pediatric medical home, the PCP should collaborate with and support the SLP and others in performing appropriate testing for communication disabilities and in communication between the SLP and school personnel. The PCP should evaluate, review, and support the SLP’s recommendation for appropriate communication equipment and updating/replacing that equipment as needed. The PCP may write a letter of medical necessity (if needed) or sign off on a letter of medical necessity prepared by the SLP and others, if appropriate. If a subspecialist such as a pediatric physiatrist, a neurodevelopmental pediatrician, a developmental and behavioral pediatrician, a complex care pediatrician, or a child neurologist has assumed the oversight of AT needs, the PCP provides oversight of the medical home neighbors as the leader of the medical home.

4. Primary care pediatricians and other PCP caring for children with CCN can support their patients by having open lines of communication with school personnel and facilitate the SLP’s communication with school personnel and outside therapists. Parents and caregivers should feel empowered to discuss in-home use of communication systems or devices with school personnel. AAC use within the home often improves the overall successful use of AAC in educational and community settings.

5. PCPs and other pediatric physicians and advanced practice providers can facilitate guidance, information, training, and support for families of children with CCN to empower families as effective advocates and care coordinators for their children.

6. PCPs and other pediatric physicians and advanced practice providers can have a key role in advocating for the appropriate funding of AAC and related services for children with communication impairments at local, state, and federal levels. There is a critical need for improvements in Medicaid funding of AAC devices and for a more uniform policy and funding stream. Such improvements have already occurred within Medicare Part B; however, Medicaid still has variable state-by-state decision-making processes.

7. PCPs and other pediatric physicians and advanced practice providers can continue to advocate for research to be directed toward new approaches for the assessment of children with CCN, including the study of short- and long-term effects of using AAC devices (especially SGDs) and evaluating changes in overall learning, social interactions, and participation in recreational and play activities.

8. Further advocacy efforts are needed to simplify and improve the process of determining AAC need and optimizing funding from third-party payers to pay PCPs for activities related to AAC. This would include time spent on care coordination such as making referrals, monitoring of use of and ongoing training for using AAC, and counseling of parents or caregivers.

Larry W. Desch, MD, FAAP

Laura Hobart-Porter, DO, FAAP, FAAPMR

Amy Houtrow, MD, PhD, MPH, FAAP

Garey Noritz, MD, FAAP, FACP Chairperson

Rishi Agrawal, MD, MPH, FAAP

Deanna S. Bell, MD, FAAP

Jessica E. A. Foster, MD, MPH, FAAP

Ellen Fremion, MD, FAAP, FACP

Sheryl Frierson, MD, MEd, FAAP

Michelle Melicosta, MD, MPH, MSc, FAAP

Barbara S. Saunders, DO, FAAP

Siddharth Srivastava, MD, FAAP

Jilda Vargus-Adams, MD, MSc, FAAP

Katharine E. Zuckerman, MD, MPH, FAAP

Dennis Z. Kuo, MD, MHS, FAAP, Immediate Past Chairperson

Jennifer Walton, MD, FAAP – Section on Developmental and Behavioral Pediatrics

Matthew Sadof, MD, FAAP – Section on Home Care

Allysa Ware, PhD, MSW – Family Voices

Alexandra Kuznetsov

AAC

augmentative/alternative communication

AAP

American Academy of Pediatrics

ASD

autism spectrum disorder

AT

assistive technology

CCN

complex communication needs

CP

cerebral palsy

EPSDT

Early and Periodic Screening, Diagnosis and Treatment

HIPAA

Health Insurance Portability and Accountability Act

ICF

International Classification of Functioning

IDEA

Individuals with Disabilities Education Act

PCP

primary care physician

PECS

Picture Exchange Communication System

SGD

speech-generating device

SLP

speech-language pathologist

VOCA

voice output communication aid

VSD

visual scene display