The process of designing and implementing an AAC system consists of many different steps. It typically starts with a comprehensive assessment to identify the strengths, abilities, and communication needs of the child. Based on the information gathered, a communication program can be developed, and the most appropriate AAC system selected. Implementation of the program occurs through instruction as well as adaptation of the activities and environments in which the child communicates or is expected to communicate. These steps—assessments, program development, instruction and adaptations—are carried out on an ongoing basis to keep up with the child's own progress and maturation.

The first step in the AAC process is to link up with an organization that provides services to young children with severe communication disabilities and their families. In the United States, there are resources available in every state, many of which offer information and assistance at very little or no cost. For the most part, these organizations work with children and/or adults with any type of disability, and offer a wide variety of supports with AAC being just one of many different services provided.

For children under the age of three there are "zero-to-three programs" (also called "early intervention centers," "infant-toddler programs" or "infant-child development programs") located in every state. These are state-run organizations which provide comprehensive assessment, therapy, transition-assistance, information and support services to infants and toddlers who have disabilities and their families. These centers are mandated by the federal government and usually under the jurisdiction of the state department of health or education. Their services are free or on a sliding fee scale, and they maintain a "family-centered" (as opposed to a purely "child-centered") approach in which the needs and lifestyle of the entire family are taken into account when establishing a child with disability's therapy and support program.

These centers can be located by asking pediatricians and public health nurses, or by contacting the administering state department. To identify the state department that has jurisdiction over a zero-to-three program in a particular state, the National Early Childhood Technical Assistance System (NECTAS) provides a listing of all zero-to-three programs by state on their web site at www.nectas.unc.edu/makecx/ptccoord.html.

OTHER RESOURCES:

• "Frequently Asked Questions: The Infants and Toddlers Program" by Susan Goodman, Esq. at at-advocacy.phillynews.com/data/faq7.html.

• "A Parent's Guide to Accessing Programs for Infants, Toddlers, and Preschoolers with Disabilities" at www.kidsource.com/NICHCY/infantpub.html.

For preschoolers (three years and up) and school-age children who have disabilities, the public school system is required by the federal government to develop and provide, at no cost to the family, an AAC program that is designed to assist the child in receiving an appropriate education. Although the program is only required to cover the child’s educational goals, the term "special education" has been very broadly defined and individually applied. A resulting AAC program can, therefore, be very comprehensive, covering home and community needs in addition to those of school. Besides developing individualized programs of instruction, schools are also mandated to provide related services and equipment, such as an AAC device, or training in its usage.

OTHER RESOURCES:

• "A Parent's Guide to Accessing Programs for Infants, Toddlers, and Preschoolers with Disabilities" which covers ages birth through five years at www.kidsource.com/NICHCY/infantpub.html.

  Help me—and everyone who reads this site—by mailing your suggestions, criticisms and personal experiences to Ruth Ballinger at yaack@iname.com

• "Questions Often Asked About Special Education Services" at www.kidsource.com/
  NICHCY/special_ed.html.

• "Educational TECH points for parents" by Gayl Bowser and Penny Reed, a guide on getting and using the right technology from your school (not necessarily AAC), at www.closingthegap.com/cgi-bin/lib/libDsply.pl?a=1113&b=5.

• "What Makes a Good Individual Education Plan for Your Child?" based on Minnesota's special education laws but useful for an IEP in any state at www.pacer.org/parent/iep.htm.

Additional support is available through the State Assistive Technology Projects, located in each state and established under the Tech Act of the federal government. These organizations provide information and assistance on all types of assistive technology, including technology-based AAC systems and devices. In addition, there are many private, non-profit and/or university-affiliated AAC resource centers located around the country. These centers specialize in AAC support and services for persons of all ages.

To locate your state's Assistive Technology Projects go to:

• The Assistive and Adaptive Computing Technology In Education website at at-advocacy.phillynews.com/data/ata.html

• The Dreamms for Kids website at www.dreamms.org/techact.htm.

To find the nearest specialized AAC center, contact your state's Assistive Technology Project (as mentioned above), or one of the listservs dealing with AAC and communication-related issues. (See On-line discussion groups.)

Currently, it is not easy to directly locate an AAC specialist or a speech-language pathologist (SLP) with AAC experience. The American Speech-Hearing-Language Association (ASHA) offers a voluntary accreditation program for speech-language and audiology programs and individual speech-language pathologists. While this certification does not require AAC experience, these programs and SLPs are obligated to divulge information upon request regarding the extent to which they are familiar with AAC. A listing of ASHA-certified speech-language and audiology programs and speech-language pathologists can be obtained on ASHA’s web site at www.asha.org/consumers/find_professionals.htm or by contacting ASHA at 1-800-638-8255.

Help me—and everyone who reads this site—by mailing your suggestions, criticisms and personal experiences to Ruth Ballinger at yaack@iname.com

OTHER RESOURCES:

• "Finding Professionals and Services" at www.mankato.msus.edu/dept/comdis/
  kuster2/library.html#findingprofs.

• "Service Providers Network in the field of augmentative communication" at www.augcomm.com/service.html.

• "The Perfect Speech Language Pathologist for Your Child" by Megan M. Guenther, MA CCC/SLP at planet-hawaii.com/7thwave/dys.slp.html.

Once a child is in place to begin receiving services, usually through an early intervention program or the public school system, many professionals, family members and others often become involved. (See Contacting an organization for services and support.) In most cases this team of people is responsible for all the special needs of the child, not just AAC. Even if the child only has a communication disability, the team is essential since a comprehensive AAC program cannot be designed or implemented by a single person for the following reasons.

• The sheer amount of work and the length of time required to develop and execute the program is usually enormous.

• A child naturally communicates in more than one environment and with a variety of different people. Communication interventions should be formulated for all major activities and routines in which the child participates, and carried out in the locations in which these activities naturally occur by parents, teachers and other persons normally involved. (See The ecological approach: Focusing on participation.)

• No single person has all the necessary information to design and coordinate the best program. Typically, family members know the child’s strengths, weaknesses, learning style, needs, interests, and daily schedule. Professionals augment this with additional information obtained through assessments, and provide the expertise and background knowledge to assist with system selection, teaching techniques and follow-up evaluations.

Teams typically include some of the following individuals: Parents or caretakers, other family members and friends, speech-language pathologists (SLPs), AAC specialists, physical therapists (PTs), occupational therapists (OTs), school administrators, special education teachers, regular education teachers, assistive technology specialists, recreational specialists, audiologists, medical doctors, and public health nurses. Anyone who has an interest in or is involved with the child, or has knowledge or expertise that would be helpful in developing and implementing a communication program may participate in team meetings, assessments and decision-making.

It is impossible to underestimate the importance of a good AAC team. The ability of team members to work together effectively and resolve conflicts and disagreements as they come up is considered by many family members and professionals to be the single most important factor in the quality of the outcome of the AAC intervention (Ballinger, R., 1998). An effective team can overcome the innumerable obstacles and issues that are typical of the AAC process. On the other hand, a team whose members are at odds with each other may become stymied over even the smallest issues.

Within the team, however, there needs to be one individual who is willing to act as team leader. This individual makes sure that everything necessary gets done, and generally assumes bottom-line responsibility for the entire process. In many respects this must become a labor of love since the leader will often have to work many hours, do the parts of the job that no one else will do, and continue to work toward and believe in solutions that may seem impossible. The more support that can be given the team leader by the other members the more successful and complete the AAC intervention will be.

Help me—and everyone who reads this site—by mailing your suggestions, criticisms and personal experiences to Ruth Ballinger at yaack@iname.com

OTHER RESOURCES:

• "General Note from RJ" at the bottom of "ASK R.J." by R.J. Cooper discusses the necessity of a team leader at www.closingthegap.com/cgi-bin/lib/libDsply.pl?a=1015&b=10.

• "Effective Advocacy: Guidelines for Assisting Parents" talks about ways in which a team leader can build a good working relationship with a parent or caretaker at www.pacer.org/parent/advocacy.htm.

Broadly speaking, there are two categories of issues which put pressure and stress on an AAC team. The first type are inherent to the AAC process itself, while the other has to do with personal and cultural differences.

The difficulties that are inherent to the AAC process are often due to the fact that even when the team is in complete agreement regarding what needs to be done, circumstances beyond the team’s control serve to obstruct the process. In particular, lack of time, funding, and other resources can be very problematic in dealing with even the most straightforward issues. Ideally, teams work through these issues by sharing responsibilities and working together to overcome such obstacles.

The following list provides examples of common frustrating issues which are inherent to the AAC process:

• A child with a severe communication impairment cannot simply be given an AAC device and expected to know how to communicate with it. Unlike adults who lose their ability to communicate through accident or disease, young children often have never had the experience of normal communication. In addition to learning how to operate the actual AAC device, a child must often also be taught basic social and communication skills such as getting a partner's attention before interacting, taking turns during an interaction, or maintaining a conversation over time. (See Basic communicative functions.) Some children even appear to be uninterested in communicating at all. For these children, it is often necessary to first work on developing motivation to communicate (Montgomery, 1986). (See Teaching a child to enjoy social encounters.)

• Every child requires a highly individualized AAC program that will satisfy his or her unique set of needs and constraints. Decisions which determine system selection, environmental adaptations, teaching methods and other issues are characterized by uncertainty and often conducted on a trial-and-error basis.

• Children with disabilities advance at different rates. The progress of a child learning an AAC system may be very slow or even apparently nonexistent for periods of time, and with many setbacks. It is often very difficult to know whether lack of advancement is due to an inappropriate AAC system or teaching technique, or whether the child just needs more time and practice.

• In and of itself an AAC program requires a great deal of time and effort. Frequently, though, a child with a severe communication impairment has many other compelling developmental or medical needs as well. Family members, teachers, communication specialists and other team members are overwhelmed by the level of need confronting them, and the difficult task of prioritizing these concerns. This is further impacted by the presence of siblings, students, clients, and other work which also demand time and attention.

• A child with a severe communication impairment may develop inappropriate behaviors in an attempt to communicate basic wants and needs. This compounds the complexities already inherent in the AAC process, and makes a child less attractive to be with. (See Children with severe behavioral issues.)

• The communication partners of the child often must themselves learn the new AAC system as well as, if not better than, the AAC user. In addition, the child’s siblings and peers may have to be instructed in how to communicate with and include the user in activities.

The second type of issue that can stress and strain an AAC team is more insidious and can result in serious opposition among members. This includes issues that develop out of fundamental misunderstandings, differences in interaction styles, and disagreements in expectation regarding the roles and responsibilities of team members and the desired outcome of an intervention program. The result is dissension among members, and an intervention program that is disjointed and not carried out as planned. Unfortunately, teams characterized by discord and lack of respect are not uncommon, and result in months or years of wasted time and effort on the parts of the members as well as the children (Ballinger, R., 1998).

The following list provides examples of serious differences of opinions and expectations which often result in dissension among team members:

• Team members may disagree on the child’s potential communication ability. For example, members may disagree on the child’s future capacity for normal speech, or on his or her ability to use a sophisticated—-and expensive—-electronic device. This results in conflict over what will constitute the main component of the child’s communication intervention program (Ballinger, R., 1998).

• Team members may have different expectations of each others’ roles and responsibilities. For example, family members may expect the communication specialist to do all the work, or to "fix" the child with minimal effort on their parts. On the other hand, professionals may demand that parents carry out substantial intervention efforts at home, not taking into account additional demands on them such as work, other children and the extra effort required in simply caring for a child with special needs. Special education teachers or teacher’s aides may be expected to do all the labor required in fabricating or programming a system, as well as maintaining and updating it on a continuous basis (Ballinger, R., 1998; Hetzroni & Harris, 1996).

• Team members may have conflicting styles of meeting and working together. An example is the group in which a few dominant members set the agenda, while the remainder sit silent but angry, and feel powerless to become a part of the decision-making process. Members may have different priorities for AAC goals, such as academic competitiveness versus social participation versus self-help and independence.

  Help me—and everyone who reads this site—by mailing your suggestions, criticisms and personal experiences to Ruth Ballinger at yaack@iname.com

  Or even more fundamental disagreements may exist, for example, the basic value of communication, or whether or not it is desirable for the child to participate in activities outside the family. These disagreements are often the result of differences in personal or cultural values between family and professionals (Hetzroni & Harris, 1996).

• Written from a child's perspective, "Me and My Therapists," by Dr Stuart Aitken, Research Psychologist, touches on some of the issues that sidetrack the intervention process at call-centre.cogsci.ed.ac.uk/CALLResearch/AAC/
  AACResearchPapers/MeandMyTherapist.

The best way of creating an effective AAC team is to include only members who basically agree on all fundamental issues. This, however, is usually not under the control of the team members. Since teams cannot guarantee the congruity of their membership, therefore, the means with which to become aware of and handle major differences and disagreements must be put into place early. Ultimately, the responsibility for leading the AAC team and creating an atmosphere of mutual respect and cooperation often falls upon one or more of the professionals. This is frequently the communication specialist, special education teacher, or other therapist. There are a number of reasons for this.

• Professionals have more experience in being members of teams since team membership is an integral part of the work they do. Some have had training in group collaboration as a part of their education.
• While professionals do not know the specifics about the child with whom they will be working, they do know the AAC process. Thus, they are in a position to act as guides in directing the overall process.
• Family members not only typically have little or no experience with AAC, they are also under a great deal of stress. They are often not in a good position informationally, or emotionally, to direct the team.

Having stated that in many situations a professional will be team leader, it is important to note that this is not always, nor should it always be true. In situations in which the child has already undergone several years of professional intervention, or there are no professionals who are familar with AAC, the family becomes extremely knowledgeable about their child's communication needs. Furthermore, families are often willing and able to put in a tremendous amount of time and effort into learning about, developing and implementing their child's AAC program. In these cases, it makes sense for a family member to become the team leader. (See If there are no AAC experts on the team.)

In addition, whether or not a professional is guiding the team, it is the family who should have the bottom-line in any decision making. Outside of explicit ethical concerns, professionals are under more of an obligation to compromise on their opinions and beliefs than are family members. This is because professionals will come into and out of the child’s life, but family members live with and care for their child for most of the day, and are, in the end, accountable for their child’s development and well-being. In the long run, family members have far more impact on their child than any professional ever does (Romich & Zangari, 1989).

Although it is of such crucial importance (Ballinger, R., 1998), surprisingly few books on AAC discuss how to assist teams in making decisions and working together cooperatively. One excellent book that does so, Augmentative and Alternative Communication Management of Severe Communication Disorders in Children and Adults by Beukelman, D. R., & Mirenda, P. (1992), identifies the process of developing team solidarity and productiveness as "consensus-building." Essentially, consensus-building occurs when all members are able to vocalize their opinions, desires and beliefs, and then work together to create a plan of action that is ultimately agreed to by each and every member. It is not majority rule.

Beukelman describes why it is crucial to make team consensus a top priority from the very beginning. He cites the following repercussions that may occur when a team works in a tense or antagonistic atmosphere.

• Some members are not given the opportunity to provide, or deliberately withhold important information.
• Some members are left out of the decision-making process. This results in their lack of "ownership" of the intervention, and subsequent lack of participation, or even sabotage, of the AAC process.
• Some members develop an overall distrust of other members or the agencies they represent. Listening with an open mind and being willing to collaborate virtually cease.
• Once an atmosphere of dissension and lack of confidence has occurred within the team, it is extremely difficult to redress the situation.

Beukelman offers several recommendations on how to build consensus in an AAC team. These general principles should be acted upon at the very outset of the AAC process.

• Create an atmosphere of openness and cooperation. Develop a process that does not allow a decision to be finalized until all members have agreed to it. This implies that all members are given the opportunity to voice their opinions and suggestions. Quieter members who have a difficult time speaking up must be encouraged to do so in a manner that is sensitive to their style and approach. Cultural differences must be understood and respected. In particular, professionals must be aware of the dynamics that are influential within the family. Being sensitive to such issues can go a long way towards developing a positive working relationship with family members. Discussion of issues that are under contention should continue until every team member feels satisfied with the final decision and agrees to carry it out as planned. This may mean that an intervention is scheduled for just a trial period, or two or more interventions are carried out simultaneously, after which the situation can be reevaluated and team discussions resumed. It is important that no fingerpointing or blame occur if something does not go as planned.

• Encourage the participation of many different persons who are or will be involved in the child’s AAC program. Besides major players such as family members and professionals, include persons whose help will be enlisted in carrying out interventions, such as other teachers, teacher's aides, recess personnel, significant persons from the community, etc. Not only is their cooperation more likely to occur if they have participated in the decision-making process, but they can usually contribute information that will enhance the prospect; for a successful intervention. This does not mean that they must attend all meetings or participate in every aspect of the process, but they must be able to have genuine input regarding aspects of the intervention that affect them.

• Encourage the use of arena assessments in which all therapists get together to evaluate the child at the same time, instead of assessments being conducted separately by each therapist. This saves time for the family and the child, and allows information to be shared by everyone present during the assessment itself.

• Team members must realize that everyone is under a great deal of stress. Family members, for example, frequently feel overwhelmed and are doing the best they can to simply cope. This is particularly true of single-parent families, or homes in which both parents work. Other team members are typically under a lot of pressure as well. For example, special education teachers and other professionals work with many different families and children with disabilities, all of whom require a great deal of attention. It is the lack of time, in particular, that seems to affect everyone the most (Ballinger, R., 1998).

• Assign roles and responsibilities clearly, and provide reasonable deadlines. This ensures that every part of the intervention plan is covered. It also reduces the potential for confusion, guarantees that no single person is expected to do most of the work, and allows the entire program to proceed in a timely fashion. One way to accomplish this is to make one member responsible for a specific component and have one or more of the other members assist.

• Upon finalizing an AAC intervention, make sure that everyone involved in carrying it out feels comfortable and confident of their role. This includes not only the operation of the AAC device or system, but how to act as a communication partner, how to handle external disturbances (e.g. other children wanting to use the device), how to physically position the child, how to deal with inappropriate behaviors, how to collect data for evaluation purposes, etc. Provide training and follow-up support, making modifications to the intervention as necessary.

• Prepare for transitions well before they actually take place. Inform and include persons from the new environment in transition planning. If necessary, train them ahead of time in the use of the child’s AAC system. This saves the new people from having to gather information all over again, and allows the intervention plan already in place to continue smoothly and without interruption. In addition, visit future locations to look for physical or attitudinal barriers so that adaptations and modifications to the new environment or the AAC system can be made in advance.

• Ideally, the team should have access to ample organizational support services and materials, such as a copier, computer, paper, telephone, meeting room, etc. Frequent communication and sharing of information via telephone, e-mail and fax among members is also very helpful.

OTHER RESOURCES:

Help me—and everyone who reads this site—by mailing your suggestions, criticisms and personal experiences to Ruth Ballinger at yaack@iname.com

• "Functional AAC Use Through Teamwork" by Cynthia Cottier at www.dinf.org/csun_98/
  csun98_020.htm.

• "Consultation/Collaboration" includes several articles on teamwork at www.ttac.odu.edu/InfoTopics.html#3.

• "Using family dreams to develop meaningful goals involving assistive technology" by Janet Sloand Armstrong and Kelly Jones at www.closingthegap.com/cgi-bin/lib/libDsply.pl?a=1005&b=5.

• "Family Involvement" is a collection of articles at www.ttac.odu.edu/InfoTopics.html#4.

The degree to which an early intervention center or school has expertise in AAC matters differs considerably. Some have their own AAC specialist, while others are serviced by a specialist who travels from location to location. In many situations, however, no one is familiar with AAC issues, and the leadership responsibilities fall to a special education teacher, speech-language pathologist or family member who must learn about the process through books, journals and Internet-based resources, and then function as the team "expert." (See Finding answers to specific AAC questions.)

Even when there is an AAC specialist available, over time family members and/or teachers often will have developed a tremendous amount of knowledge regarding the child’s communication requirements. It is surprising how often professionals design a new program from scratch rather than utilize valuable information available from earlier assessments and interventions, thus,losing the momentum of an already established AAC program (Ballinger, 1998; Locke & Mirenda, 1992.) (See Forging an effective AAC team.)

A team based on openness, cooperation and consensus is ideal, but, unfortunately, often not the reality. If a team is characterized by dissension and distrust, there are a few options available. One possibility is to try to renew the dynamics of the group by adding or dropping members. This may not be practicable. Sometimes it is possible for the family to assemble a new team by transferring the child to a new school or a different early intervention program.

If there is no chance of creating a new team, however, it is incumbent upon the members of the team who are professionals to largely concede to the wishes of the family, unless, of course, there are ethical issues at stake. As stated earlier, it is the family who has the greatest impact on the child in the long run, and it is the family who is ultimately responsible for the well-being and development of the child. (See Forging an effective AAC team.)

In the situation in which there are fundamental disagreements between the family and professionals, and discussions no longer seem fruitful, it is possible for any member of the team to resort to legal action. In practice, however, most litigation is initiated by the family.

OTHER RESOURCES:

Help me—and everyone who reads this site—by mailing your suggestions, criticisms and personal experiences to Ruth Ballinger at yaack@iname.com

• The Council of Parent Attorneys and Advocates (COPAA) at www.copaa.net.

• EDLAW at www.edlaw.net. EDLAW includes a list of attorneys who represent parents of children with disabilities at www.edlaw.net/public/attylist.htm.

• The Special Ed Advocate includes "...articles, cases, newsletters, and other essential information about special education law and advocacy" at www.wrightslaw.com.

• Assistive and Adaptive Computing Technology in Education offers an extensive list of resources and advocacy information at at-advocacy.phillynews.com/index.html.