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CLINICAL REPORT |
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ABSTRACT |
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 TOP ABSTRACT BACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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Key Words: assistive technology • communication • children with disabilities • special health care needs • pediatrician • augmentative and alternative communication • communication impairments
Abbreviations: VOCA—voice-output communication aid • SGD—speech-generating device • AAC—augmentative/alternative communication • PECS—Picture Exchange Communication System • ICF—International Classification of Functioning, Disability and Health • AAP—American Academy of Pediatrics • IDEA—Individuals With Disabilities Education Act • EPSDT—Early and Periodic Screening, Diagnosis, and Treatment
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BACKGROUND |
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TOPABSTRACTBACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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Many children and youth with special health care needs can improve day-to-day functioning with the aid of assistive technology, including alternative or augmentative technology. "Assistive technology," the more general term, describes systems and devices that help alleviate the effects of a disability and, thus, improve function. An example is the use of orthotics (braces) for a child who has L4 paraplegia attributable to spina bifida. "Alternative technology" substitutes for functional impairments related to a disability (eg, adapted power wheelchairs for children who have quadriplegia). Lastly, "augmentative devices" are those that augment a deficient area of functioning but for which residual abilities remain. An example of this would be an electronic voice-output communication aid (VOCA), sometimes called a speech-generating device (SGD), to be used for a child who has dysarthria attributable to cerebral palsy. In this situation, although natural speech may be somewhat understood by family members, it is augmented when communicating with people who are less familiar with the child.
The most common context for alternative and augmentative systems is in the field of speech-language pathology (eg, augmentative/alternative communication [AAC] systems). According to an analysis of data from the National Survey of Children With Special Health Care Needs, approximately 2.1% of children and youth with disabilities have a need for "communication aids or devices"—AAC systems.4 The data also revealed that the needs for communication aids and devices were unmet for approximately 25% of these children.
AAC is often erroneously thought to refer only to microcomputer-based and complex electronic devices. Although such electronic devices may be the best answer for a particular problem, they represent only the higher end of the spectrum of technology. Assistive technology, including AAC systems, can be thought of as low-tech, mid-tech, or high-tech.5 The costs for assistive technology also vary widely depending on the level of complexity and other factors. Although many low- and mid-tech AAC solutions are available to assist children with communication disabilities, this report focuses primarily on high-tech VOCAs or SGDs, because pediatricians are often asked to prescribe or approve the use of these more expensive devices.
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CURRENT PRACTICE |
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TOPABSTRACTBACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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Simple communication boards can be accessed through both direct selection and assisted scanning. In direct selection, the child directly touches or points to the desired target (eg, word, symbol). In partner-assisted scanning, the communication partner scans through the available choices until he or she is stopped by a response from the child (such as an eye blink). For children with autism spectrum disorders, a systematic program called the Picture Exchange Communication System (PECS) has been developed and has gained increasing acceptance as a valuable tool for improving communication skills.6 In this system, children are taught to "exchange" laminated picture cards of the items or activities they are requesting for the actual items or activities themselves.
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. These levels are typically changed by the communication partners on the basis of the activity. When the desired button is accessed, the recorded message plays. Most mid-tech devices are accessed only through direct selection. Some mid-tech devices have scanning capabilities, accessed with a single switch.
Low- and mid-tech communication systems have inherent limitations. Vocabulary is limited by what is presented, and lengthy, novel messages are not feasible. Communication is usually slow and often more scripted than spontaneous or independent, and mid-tech devices require programming of scripted messages before the activity.
High-tech electronic AAC devices often incorporate the use of pictures or symbols, which may substitute for sentences or other groups of words, and are becoming more commercially available. High-tech AAC aids primarily have digitized or synthesized voice output (ie, are VOCAs or SGDs), although the methods of producing this voice output vary. Many high-tech devices use synthesized speech, an electronic voice that simulates that of a human voice. The use of a synthesized vocabulary allows for the creation of novel messages. Most computerized systems have the capability to add digitized speech to specific messages. 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, which improves both the variety of potential vocabulary items and independence in communication.
High-tech devices typically have the capability to have multiple access (input) methods ranging from direct selection on a touch screen to various types of scanning, mouse/joystick controllers, or encoding systems. Some computer-based devices can be accessed via eye gaze. For children who have both 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.
Single-function AAC devices (SGDs or VOCAs) serve as communication-output devices only. Some of the newer AAC systems, including some VOCAs, can also perform functions such as controlling the environment, accessing a telephone, or serving as a computer-access method.
The advantage of high-tech VOCAs is their expandability and flexibility. For children whose communication skills are likely to improve over time, the vocabulary in the VOCA can be modified to accommodate the advancing development and changing needs of the child. Thus, the skills of the child and capability of the device increase in tandem and promote communicative proficiency into adulthood. As an example, for a young child who has an ASD but is limited in communication by using the PECS, a VOCA may be helpful, because at least 1 report has indicated that VOCAs can increase communication skills in preschool-aged children with autism spectrum disorders.7
People who have normal speech are so accustomed to a high rate of speed that patience and appropriate training are necessary to communicate with an individual using AAC systems. This is especially true if the child is using a low-tech communication aid such as a symbol, letter, or word board. Although these methods are extremely slow and/or inflexible, they should not be abandoned. Depending on the child, they often are just as effective, if not more so, than high-tech devices in simple face-to-face communications and with multiple caregivers.
Another important consideration is that electronic devices are sometimes limited by their need for a power source, which inhibits their usefulness in situations in which battery power gets depleted. A lower-tech solution, such as a word or picture board, should always be available as a backup for high-tech AAC system users.
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CURRENT RESEARCH AND LIMITATIONS |
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TOPABSTRACTBACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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The use of electronic or computer-based AAC devices may promote natural language acquisition and cognitive development. For example, 1 study has shown that an AAC device will facilitate natural speech production in children who have some potential for speech.10 In addition, the use of communication aids offers opportunities for research into the interaction of people who are nonverbal (because of a disability) with those who are able to speak. An interesting but limited study by Beukelman and Mirenda11 demonstrated the need to study the process by which AAC devices are selected and used. Their research suggested that if a child who has a severe communication impairment is successfully using an AAC device by the time he or she reaches the first grade, that child will participate more actively in classroom settings. Children who were skilled and comfortable with their AAC devices communicated more frequently with their typically developing peers. Additional research on AAC systems and children is needed, especially to determine if earlier exposure to communication aids will promote more facility in their use or other gains.
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ASSESSMENT ISSUES |
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TOPABSTRACTBACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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The basics of the overall assessment process for assistive technology are shown in Fig 1. This cycle usually needs to be repeated periodically as the child develops and his or her needs change. The assessment process for AAC should include consideration of the entire spectrum of AAC. One possible approach is to consider the use of low-tech devices and, if needed, to progress to mid-tech devices and, finally, high-tech devices. If a low-tech solution solves a particular problem, then more sophisticated technology may not be needed currently (but may be in the future). For example, a child with an autism spectrum disorder or other severe language disorder may derive more benefit from the simple PECS than a complex VOCA, but if that same child outgrows the PECS, a sophisticated VOCA may become the most appropriate means of AAC.
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Standardized instruments for initial and follow-up assessments include the Functional Independence Measure, the children's version of the Functional Independence Measure (the Wee-FIM), and the Pediatric Disability Inventory.14–16 Environmental modifications, such as the use of assistive devices, have been shown to significantly affect these types of measures.17 Standardized language-assessment tests should also be used to determine progress in communication abilities.18 Caution is advised when using standardized tools to evaluate children using AAC systems, because they were not developed with these devices in mind.19 Accurate baseline measurements are crucial for evaluating functional changes over time after the introduction of any assistive technology, including AAC.11
Children who have moderate to severe physical and communicative limitations are in particular need of the combined knowledge and experience of an interdisciplinary team, because many barriers to the use of assistive devices exist.20 Factors that need to be assessed include current and future language needs, motor abilities and deficits, cognitive levels of functioning, vision and hearing functioning, communication partners, and environment and mobility issues. A major task for the team is to determine which movements the child can make consistently and how these movements can be used to control some type of device. Next, the team should determine the most acceptable, useful, and feasible output method depending on the child's needs and his or her communication partners. For example, output information could be displayed on a monitor screen, output by a printer, or presented as synthesized speech. Most of the time, multiple output types are preferred. Last, the child should be observed using various devices.
Educated opinions based on the successful experiences of other children who have similar disabilities using AAC can be quite useful. Using the aforementioned steps, the skilled speech-language pathologist should be able to select the devices that are most likely to meet the child's individual needs on the basis of his or her abilities and communication environments. 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 1- to 2-month trial gives the child and his or her family and the educators/caregivers the opportunity to be trained and to assess the child's ability to use the device in different settings to identify both 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 or nonprofit organization) is often useful, but these centers may be quite distant or have long waiting lists.
Studies have demonstrated that assistive devices may be abandoned shortly after they are obtained in one third of cases and that up to 75% of devices are never used successfully.21,22 Much of this can be attributed to lack of proper assessment and training. During the past 2 decades, however, methods have been developed to improve the successful matching of assistive devices to users (especially with adults [eg, "Matching Person and Technology"]).23,24 Similar methods have been used with older children and adolescents.25,26
The physician or therapist who prescribes or recommends a VOCA or assistive devices in general must also accept responsibility for ensuring that the child and all caregivers receive proper training and monitoring for the use of the device. Training is crucial for the successful use of any assistive device. Generally, the most appropriate approach to training and monitoring is to use the combined expertise of an interdisciplinary team of therapists and specialists.
A few tools and standardized measures are available to assist in the process of evaluating the efficacy and performance of assistive devices.27,28 One promising method was reported recently by a group that developed a 10-step framework, which includes input from parents, to help professionals obtain assistive technology for young children.29 These tools are promising but are still in their infancy and require additional work.
Despite minimal data from controlled studies, methods are available to promote evidence-based and appropriate uses of assistive devices. A useful approach for determining the effectiveness of interventions in individuals may be the implementation of what has been called a "single-subject research design."30,31 This type of study involves the quantitative assessment of a child's baseline abilities, followed by repeat assessments after specific interventions.32 In the best of such studies, the assessments are performed by evaluators who are unaware of the intervention ("masked"); however, this is not critical. In the single-subject research design, the individual serves as his or her own control.
Although multiple-baseline studies may be difficult to obtain with children who are in a therapeutic or school environment, 2 or more types of interventions could easily be studied across time to determine which treatment or device seems to be the most effective. Figure 1 includes a "detour" between the steps of monitoring the use of the device and selection of device to allow for multiple baselines.
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ROLE OF THE PRIMARY CARE PEDIATRICIAN |
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TOPABSTRACTBACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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Primary care aspects of care coordination in the context of communication disorders involves 4 components: cooperating/assisting with the diagnostic assessment process to ensure proper diagnostic and prognostic information; helping with short-term and long-term planning by appropriate professionals, especially speech-language pathologists; assisting with the implementation of any of the parts of the plan, including helping to find funding sources for the purchase of devices; and working closely with the family and a team of professionals, mainly educational and speech-language therapists, to evaluate the effectiveness of the efforts being made and to ensure appropriate follow-up.
Although the primary care pediatrician should be closely involved with all 4 of these components of care coordination, the last step is particularly important. The primary care pediatrician may be the professional who is best able to evaluate the child's progress in relationship to the family's satisfaction or dissatisfaction. For specifics about providing care coordination and care management, a recent policy statement from the American Academy of Pediatrics (AAP), "Care Coordination in the Medical Home: Integrating Health and Related Systems of Care for Children With Special Health Care Needs," provides additional information and resources.34
Funding Issues and Access Regulations
Funding for assistive technology for children can come from schools; third-party payers including Medicaid and private insurance companies; or philanthropic sources. Roadblocks to funding AAC still exist, and many families have found that it is much easier to obtain funding for an expensive power wheelchair than it is for a less-expensive communication device. However, it is best to assume that funding will be provided, because, in the context of communication impairments, AAC is often necessary to overcome the limitations in functional communication caused by the impairment (just as a wheelchair overcomes the limitation of not being able to walk).
Beginning in 1973, several laws were passed that affected access to assistive devices for children with disabilities. First, Section 504 of the Rehabilitation Act of 1973 (Pub L No. 93–112) prohibited discrimination of children with disabilities and mandated educational programs for children with disabilities. This law was followed by the Education for All Handicapped Children Act of 1975 (Pub L No. 94–142), which required public education systems to provide a "free and appropriate education and related services" to meet the unique needs of every child with a disability. This educational service was to be provided in the "least restrictive environment" possible, an environment in which a child with a disability may interact with nondisabled peers. Section 602 of the law provides for the "use of instructional materials, including telecommunications, sensory and other technical aids and devices," to aid the child with disabilities to function more easily in the school environment.
The Technology-Related Assistance for Individuals With Disabilities Act of 1988 (Pub L No. 100–407, later amended as Pub L No. 103–218 [1994]), although written mainly to affect adults, also has proven to be quite beneficial to children. Called the "Tech Act," this law defined assistive technology and, more importantly, provided financial assistance to states to develop projects to improve each state's delivery of assistive-technology devices and services. By 1996, after several revisions to the law and increased funding, 56 assistive-technology centers (1 in each state and US territory) were functioning.35
The Education for All Handicapped Children Act was changed in 1990 to the Individuals With Disabilities Education Act (IDEA [Pub L No. 101–476]). The IDEA has increased services to children who have disabilities (birth to 21 years of age), including, by specific provisions in the law, appropriate assistive technology. This law was last reauthorized in 2004 (Pub L No. 108–446), and the sections related to assistive technology were essentially left intact.
The latest education law, the No Child Left Behind Act of 2001 (Pub L No. 107–110), does not specifically address technology but does include provisions that mandate "measurable educational improvement" for children who have disabilities.36 In some instances, AAC technology may be needed to meet the measurable educational goals.
Recent Medicare regulations can be seen as a possible template for future mandates that may affect many more children. Medicare now authorizes that all people who receive Medicare benefits are entitled to receive "medically necessary" AAC devices, with 80% of the cost paid for by Medicare funds.37 These new regulations, included in Part B of Medicare, cover only SGDs and provide for 4 levels of funding (up to nearly $6500 for a device). Any adapted computer, however, would not be covered, because computers are not considered "dedicated" SGDs. Since final rulings in 2001, essentially all Medicare beneficiaries are entitled to an SGD if there is any "functional need" (eg, after a stroke) and a medical necessity letter is submitted by a physician (who does not need to be a specialist). Medicare also requires an evaluation and report by a "certified speech and language pathologist," although there is, as yet, no credentialing specifically for AAC by the American Speech-Language-Hearing Association.
Approximately 3 years ago, these same Medicare regulations were used to develop rules that cover funding for VOCAs for adults and children who receive benefits from the US Department of Defense (ie, the TRICARE program).38 However, neither of these sets of regulations (Medicare and TRICARE) contain a requirement that the communication impairment be permanent.
In contrast to these 2 sets of regulations, Medicaid payments for AAC systems, being dependent on state laws and rulings, are extremely variable, and some states with strict limits for Medicaid rarely pay for AAC systems for children, especially expensive devices such as VOCAs. Medicaid funding is further discussed later in this report.
Educational System Funding
Funding for assistive devices and software will remain challenging for many school districts unless funding inequities among schools are resolved. It is fortunate that, as noted before, there are provisions within the IDEA and subsequent laws (eg, the Tech Act) and various legal opinions about these laws that specifically indicate that funding should be made available for "technologic devices" (including software) to help children who have special education needs. Although these statements are in public law, difficulties in finding the funds to pay for assistive devices and for other "educationally related services" will continue, at least for the foreseeable future. Additional information about these issues can be found in a statement from the AAP.39
On occasion, schools have purchased VOCAs or other electronic communication aids for children with functional impairments. Unfortunately, these devices are sometimes kept at the school and are not allowed to be used at home. The Tech Act has tried to alleviate this problem partially by allowing Medicaid funding to be used by the school to purchase the assistive device. The Tech Act requires that such devices be allowed to be taken home with the child for "educationally related" purposes. In other words, for any device even partially funded by Medicaid, the school cannot prevent the child from using the device at home.
Debate continues whether AAC devices are "medically" or "educationally" necessary. If they could be shown to be medically necessary, it may be possible to obtain funding for these devices from health insurance companies or other third parties. In this regard, the use of AAC systems should lead to more efficient and accurate medical encounters (eg, improved describing of symptoms). If they are truly educationally necessary, perhaps school systems should be required to purchase the needed devices. Appropriate learning certainly depends on the exchange of information and efficient communication. This dichotomous debate is short sighted. Clearly, if one takes the view that health is about overall well-being and functioning, not just absence of disease, AAC is often medically necessary in many ways.
The complicated nature of education law terminology can sometimes cause knowledgeable parents to have unrealistic expectations that assistive devices, including AAC systems, must be immediately provided. Cooperative efforts between philanthropic agencies, school systems, and parents in some localities may be the best solution to finding appropriate funding. Parent groups and their allies may be able to lobby effectively for other sources of funding and convince schools of the need for appropriate assistive devices. The last resort, although laborious and slow, is to work with lawyers and the court systems if educational funding of AAC systems is not forthcoming for an identified educational need.
Third-Party Funding (Insurance and Medicaid)
As with wheelchairs, some AAC devices are increasingly being recognized as medically necessary forms of "durable medical equipment." For years, most private and governmental medical coverage programs have been willing to pay for the purchase of wheelchairs and gradually are beginning to fund other assistive devices, including AAC systems, primarily under their durable medical equipment benefit rules. In addition to requiring a doctor's prescription (and possibly a letter of medical necessity), most third-party payers also require a written evaluation report by a speech-language pathologist. It is unfortunate that some insurance companies will not pay for any follow-up assessments or follow-up therapy critical to learning how to use the device (even when the school provides the funding for the device).
Although in all states Medicaid will pay for AAC devices, wide variation exists in state Medicaid requirements, which limit the ability to obtain funding. The Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program, which is a required part of every state Medicaid plan, could be used for funding of AAC systems, because under EPSDT, children are entitled to an "expanded scope of benefits."40 However, a number of recent reports have underscored continuing problems with implementation of EPSDT programs in most states.41 Some states have put considerable restrictions on the types, severity, or permanency of disabilities for people who can receive Medicaid payment for AAC systems. For example, Medicaid regulations in 1 state indicate that AAC is not covered for any person who can "functionally communicate verbally or through use of gestures," and the person needs to have a "permanent" disorder.42 As mentioned before, pointing and gestures are very limiting and are not efficient communication methods.
The parent or guardian of any child who receives Medicaid benefits always has the legal right to challenge any decision made by a state Medicaid program, including denial of payment for therapy services or cost of repairing an AAC device. The appeal process involves requesting an administrative hearing, a process that varies from state to state. If there is an unfavorable decision made from this hearing, an appeal can be made to state and federal courts; such appeals have been successful occasionally.
Most state Medicaid programs will not fund AAC unless it is medically necessary to treat a permanent inability to communicate through oral speech. In some children who have communication impairments (eg, posttraumatic head injury), there may not be any "proof" that they are permanently disabled. Another source of reticence from Medicaid and other funding sources can be the minimal evidence for demonstrable short-term benefits. Long-term benefits could be substantial but may also be difficult to measure and may be mainly the result of improved mental health, self-esteem, and independence.
Referrals and Prescriptions
Pediatricians are often called on to make referrals, sign prescriptions, and write letters of medical necessity to help obtain funding both for the devices and the assessments. A letter of medical necessity should be written only after conferring with members of the team who have evaluated the child (especially the speech-language pathologist). This letter should state that the physician received the evaluation reports, reviewed the recommendations, and concurs that the recommended devices are medically necessary for treatment of the child's communication impairment caused by the specific diagnosis. For some agencies, information about the child's current status and expected outcome after using the device must also be included (but this information is often part of the report from the speech-language pathologist). The funding agency needs more than just a report of the physical examination or diagnoses. Government agencies, private insurance companies, and charitable organizations all have limited funds, and requests that include the most complete and clear information are the most likely to be funded. Medicaid payers in many states and some insurance companies have set up specific requirements for a detailed evaluation report by a licensed speech-language therapist to accompany the prescription or medical-necessity letter that is signed by the physician.
Funding Overview
Obtaining funding requires perseverance. Sometimes, a request for an AAC device is denied because the funding agency has never had any experience with such a device. However, denials of funding by most agencies are subject to appeal. The appeal process in these situations should not be taken lightly. The denial letter may include reference to the specific statements made in the insurance policy. This can often be the starting point of an appeal letter by the family. Often, the speech-language pathologist, pediatrician, or other advocate can offer a supportive letter for this appeal. An appeal is most likely to be successful if it can be shown that a child can benefit significantly from using the particular device. Failure of an appeal can sometimes make funding for a particular device (or even any device) unlikely, if not impossible, for other children with similar disabilities. Therefore, a successful appeal can be used as an important precedent for future requests. AAC devices and their related professional services are relatively new and specialized, and they sometimes are not included on lists of approved products eligible for funding. Funding agencies may benefit from instruction about the potential of these devices to improve functioning and independence for children who have disabilities. Many companies that make AAC devices also have their own funding specialists on staff who can be helpful in dealing with insurance companies or other agencies.
Because funding for the purchase of devices and funding for training and monitoring in the use of AAC devices are difficult to obtain, the multidisciplinary team may need to develop insightful strategies to obtain funding for even the simplest low-tech devices. Literature is becoming available that focuses on the specifics of funding for devices and their long-term cost-effectiveness.43–45
Unfortunately, there is no final answer to the conundrum of who should pay, and funding often requires a good deal of patience and creativity. In some cases, the final possible source of funding, when other options have been exhausted, may be local philanthropic organizations (eg, United Cerebral Palsy, Easter Seals, various social organizations). It is possible that additional improvements in regulations or expansions of state Medicaid-based programs (such as enforcing EPSDT rules) will also lead to more availability of AAC devices for children who need them. In addition, particularly if grass-roots efforts succeed, Medicaid rules may also be expanded to more closely parallel the rules now being implemented within Medicare (because of the recent regulations made in Medicare mentioned previously). However, this might lead, once again, to the apparently common situation in which Medicaid rules may sometimes be more permissive in funding AAC and other devices for children and youth with special health care needs than are insurance programs, which sometimes contractually consider them "noncovered" benefits (eg, for children who have autism spectrum disorders).40
Advocacy Information
Technology advances quickly, and it is rare that a pediatrician can stay current with all new developments. Pediatricians, however, should serve as informed advocates. Families of children with disabilities may have very high expectations about AAC and other assistive technology. They may try to find answers to their concerns and questions with or without support from health care professionals. Pediatricians often have a critical role in this process, because caregivers, patients, or allied health professionals may request their opinion or prescriptions for some of these devices. To be able to provide realistic and appropriate answers, pediatricians should keep generally informed about what is being developed and marketed and, more importantly, what local resources are available to provide more information and access to a proper assessment.
Fortunately, there are readily accessible sources of information that can provide current information about assistive technology (see Appendix). An important resource for specific materials, such as examples of medical-necessity letters, is the AAP National Center for Medical Home Initiatives for Children With Special Needs. 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 that deal with 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 Internet sites that offer resources for using assistive technology with children, although some of them are thinly veiled advertisements from companies or groups that may propose "alternative therapies." The Appendix contains a list of selected sources for information retrieval.
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CONCLUSIONS |
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TOPABSTRACTBACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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The future will bring many new and useful devices that can help a child who has a communication disability be more functional. Appropriate use of the entire spectrum of AAC systems and devices for children who have communication disabilities is needed, is supported by several federal and state laws, and is ethically proper.
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GOALS AND GUIDANCE |
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TOPABSTRACTBACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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APPENDIX: RESOURCES |
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TOPABSTRACTBACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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National Institute on Deafness and Other Communication Disorders, National Institutes of Health, 31 Center Drive, MSC 2320, Bethesda, MD 20892–2320; www.nidcd.nih.gov; 800-241-1044
Internet Resources
AAP Department of Practice, Division of Health Care Finance and Quality Improvement (a resource to assist pediatricians with helping families to obtain coverage for needed services including speech/language and other therapeutic services); http://aap.org/moc/reimburse/codingrbrvsresources.htm
AAP National Center of Medical Home Initiatives for Children With Special Needs (training programs and materials and other resources for pediatricians including materials to help with care coordination for children who need assistive devices); www.medicalhomeinfo.org/training/compindex.html
Assistive Technology Law Center, SGD Funding Solutions (provides information about resources and programs that provide funding for AAC, especially SGDs); www.aacfundinghelp.com
ATOMS (Assistive Technology Outcomes Measurement System) Project (an academic, research-based resource for measuring outcomes of the use of assistive technology); www.r2d2.uwm.edu/atoms
Council for Exceptional Children (a site with broad uses including references to laws and links to agencies [including CEC-Canada]); www.cec.sped.org/AM/Template.cfm?Section=Home
Hattie B. Munroe Barkley Memorial Augmentative and Alternative Communication Centers (resources and links for AAC, including specific Web sites for AAC uses with young children and early intervention [the YAACK program]); http://aac.unl.edu
National Assistive Technology Technical Assistance Partnership (NATTAP) (provides technical assistance to the 56 state and territory assistive technology programs as authorized under the Assistive Technology Act of 1998); www.resna.org/taproject
National Organization Caring for Kids (NOCK) (provides grants for AAC devices for children with severe communication impairment caused by a chronic illness [another part of NOCK provides wheelchairs]); www.nockonline.org; 253-851-6625
Net Connections for Communication Disorders and Sciences. An Internet Guide (by Judith Maginnis Kuster). This site includes valuable resources for professionals and students in communication disorders and sciences as well as for persons with communication disorders. www.mankato.msus.edu/dept/comdis/kuster2/welcome.html
United States Society for Augmentative and Alternative Communication (an "organization dedicated to supporting the needs of people who rely on AAC devices, as well as the professionals, [and others] . . . making up our community"); www.ussaac.org
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COUNCIL ON CHILDREN WITH DISABILITIES EXECUTIVE COMMITTEE, 2007–2008 |
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TOPABSTRACTBACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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J. Daniel Cartwright, MD
Larry W. Desch, MD
John C. Duby, MD
Ellen Roy Elias, MD
Gregory S. Liptak, MD
Scott M. Myers, MD
Kenneth W. Norwood Jr, MD
Paul J. Sagerman, MD
Ann Henderson Tilton, MD
Paul H. Lipkin, MD, Ex-Officio Chairperson
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CONTRIBUTING AUTHOR |
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TOPABSTRACTBACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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Council on Children With Disabilities Executive Committee Member-at-Large
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LIAISONS |
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TOPABSTRACTBACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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Centers for Disease Control and Prevention
Michelle Macias, MD
Section on Developmental and Behavioral Pediatrics
Donna Gore Olson
Family Voices
Bonnie Strickland, PhD
Maternal and Child Health Bureau
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STAFF |
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TOPABSTRACTBACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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FOOTNOTES |
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The guidance in this report does not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.
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REFERENCES |
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TOPABSTRACTBACKGROUNDCURRENT PRACTICECURRENT RESEARCH AND LIMITATIONSASSESSMENT ISSUESROLE OF THE PRIMARY...CONCLUSIONSGOALS AND GUIDANCEAPPENDIX: RESOURCESCOUNCIL ON CHILDREN WITH...CONTRIBUTING AUTHORLIAISONSSTAFFREFERENCES |
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