Who Needs this Instrument?
Overview of The Protocol

How can parents and professionals use the protocol?

Lesley and I expected speech language pathologists, educators, parents, siblings, caregivers across environments to pick up the protocol and use it with confidence. We point to the next more complex level from the beginning of our interaction, not stopping with one activity but building upon each new skill by accepting and providing access to technology and interaction consistently and supportively.

Who completes the instrument?

The instrument is designed so that parents, siblings, caregivers, educators, aides and speech-language pathologists each contribute to describing the everyday communication of children who cannot speak. When each person of a team completes the instrument, he/she can reflect on and offer unique insights. The team can obtain a comprehensive profile of the child's functional communication by sharing their experiences and insights about the child as drawn from a wide range of situations with a variety of people over a significant period of time. In the process of triangulation, all persons strengthen the assessment and instruction as they accurately describe, compare, and thus validate their real life observations of the child. This combined picture provides an integral key both to the child's current communication and to effective educational planning...

In completing the instrument, families and professionals will have an effective starting point to dialogue and collaborate on important communication and cultural differences. Parents actively participate as experts and informants, rather than reactants on a narrow range of school based topics. Other caregivers, such as siblings and baby sitters, who complete the instrument will contribute and see that their own point of view matters. Educational psychologists and occupational therapists are better able to support the children's performance as communication partners as they co-construct the children's messages once they have examined the vital and varied communication the child uses naturally in the home and elsewhere. Aides and substitute teachers also have a reference to support communication with each other around both academic and social issues.

We are beginning to see the same uses for caregivers of adults who cannot speak. The adults who cannot speak would include persons with degenerative conditions such as muscular dystrophy, Amyotrophic Lateral Sclerosis (ALS), Parkinson's, and Alzheimer's. Their care providers, as informed communication partners, can also create optimal communication opportunities, respond appropriately, and relate to their patients' interests, strengths, and significant life contributions. Using the instrument, these caregivers can plan their interaction around the patients' special interests, personal preferences, and prior communication patterns. The staff in health care facilities could use the instrument to evaluate the medical and emotional benefits of using and enjoying some alternative forms of communication, including reading and writing, and to evaluate the effect of medications on the communication competence of these adults.

How and when should the instrument be completed?

Referrals

The instrument is designed to be used as part of the referral process for special education services, for subsequent IEP meetings, and triennial evaluations. The team coordinator of the school district's special education program will ask the parents to complete this instrument before the first meeting. This parent report serves to introduce the child to the other members of the child's educational team, the educators, aides, and speech-language pathologists. This way the parent can, from the beginning, be an active contributor to the process of assessment and planning.

One of the ways the referral meeting might go is this. When the team meets, the person chairing the meeting begins by explaining the purposes of the meeting:

    * share what the child communicates and describe the child's natural communication,
    * work as a team in order to assess current communication proficiency more completely,
    * identify priorities, show respect for, and integrate cultural practices of the family,
    * recommend further assessments, meaningful goals, and methods of instruction, including alternative communication and effective teaching strategies.

Teaching requires effective partnerships between parents, educators, aides, and speech-language pathologists. Only through collaboration can accurate assessments be made and effective teaching occur. Every child and every team will differ. Therefore the best interests of each child will be served only as members of the team support each other.

The chair monitors any tensions parents, educators, aides, and speech-language pathologists may bring to or develop during the meeting. As parents simply share their descriptions and other team members learn from and value their contributions, strains and hostilities are less likely to arise. The result is not only a cooperative attitude toward intervention, but also a more comprehensive assessment of the child's natural communication. The goal is for the entire team to understand, agree upon, plan for, and support the instruction for each child.

The parents are asked to share their descriptions, statement by statement, category by category. Members of the team will ask questions to clarify descriptions, identify the most significant needs, and incorporate family practices and concerns from the start. Each participant is encouraged to share respectfully both responses and responsibilities. Prelock (1999) suggests appointing a "jargon buster" so that no one is embarrassed by having to ask for explanations and so that everyone uses vocabulary others easily understand. As the parents describe their child's communication, the educators and speech-language pathologists take notes. They will jot down ways the child's natural communication could be supported in the classroom activities. The speech-language pathologist will especially be aware of communication strengths and the most consistent way the child communicates. They will identify times when they have found the child's communication to be most confusing.

When the child's current communication proficiency has been described, the team can determine what and how to use the child's communication as they adapt other test materials. For example, when they know how to interpret a child's reliable yes/no response, they can ask multiple choice questions (Glennen & DeCoste, 1997) used in standardized tests.

The final step is to use the child's communication in achieving communication opportunities and successes in the classroom. These results will be used in writing and implementing meaningful Individualized Education Plans built around real life experiences and the child's interests, needs, learning styles, and most consistent communication patterns. The team members will not have to try to translate formal tests and developmental measures into classroom activities, a task for which these tests were not designed. The goals may not emphasize the production of the sounds of speech at all.

Educators, aides, and speech-language pathologists will then adapt the academic curriculum so the child can communicate using alternative line drawings or printed words. Because the descriptions are made collaboratively, parents will be less resistant. They understand and can actively integrate the child's communication within their own daily activities. Educators, aides, and speech-language pathologists will focus their valuable educational time on accurately interpreting, then sensitively shaping and augmenting the child's communication throughout the day.

Subsequent IEP meetings and triennial evaluations

For subsequent IEP meetings and triennial evaluations, the team coordinator can distribute the previously completed instrument and ask each team member individually to update the protocol before their next scheduled team meeting. The parents, educators, speech-language pathologists, and perhaps classroom assistants will individually write in their current observations and descriptions on the blanks at the end of each statement. They are told that these descriptions will be shared in the upcoming meeting as together they plan instruction for this child. As they read the statements and examples, they are independently to recall similar situations where they have observed the child communicate and to describe how the child expressed him/herself. They simply leave blank any statements they have not observed. Everyone contributes out of his/her own experience and expertise, offering what he/she knows. The team expects that the child's parents have the most experiences to describe. The team looks for changes in the child's communication from the previous assessment and notes increased uses and complexity of communication.

Responses from the various team members can be compiled into one summary form as is done in the Composite Summary at the end of this manual. This additional step is often not necessary because the content is discussed at the meeting. The team then can use the meeting time to review their individual responses and form their own composite summary. They can discover consistencies and inconsistencies, communication difficult to interpret by nearly everyone. Their planning for instruction begins with collecting an accurate description of the child's current communication repertoire and discovering alternative communication and strategies the child already uses. Examples from each member of the team provide needed information about the child's changing motivation, interests, and communication alternatives.

At assessment periods throughout the year, parents, educators, aides, and speech-language pathologists can refer to and compare the child's current communication skills to those initial ones. This diachronic tool, a measure of everyday communication as it occurs and develops over time, provides a clear and continuous record of communication as it occurs in academic as well as social environments. Adding time lines can define responsibilities of adults and peers in responding to the child's communication around favorite books, toys, videos, etc. They can also find alternative means the child could use, such as pointing to line drawings and words. Together parents and professionals not only track the child's valued progress but also evaluate the effectiveness of the child's communication program and project the use of needed resources.

How long does it take to complete this instrument?

The instrument usually takes about an hour to complete the first time. Some need more time to reflect on their experiences before completing it. Parents who have used this instrument, usually take the full hour because they have the most information and experience to offer. They state that they actually enjoyed working on it, contrary to some previous assessments they described as unfruitful, time consuming, and tedious. Parents believed that by using this instrument they were contributing to professionals' ideas and efforts supporting their child. Based upon past experiences with sending forms home for parents to complete, the educators were concerned that parents would neither be willing nor competent to complete this form. My experience has been quite to the contrary. Parents of the children welcomed and very competently wrote their observations with detailed descriptions. They openly shared their experiences as members of their child's team.

The sixty minutes completing this instrument will save hours of observations and duplication of tests. Professionals will be better able to interpret the children's initial responses and build upon meaningful, known interests. Instead of spending significant amounts of time enlisting the children's cooperation on unfamiliar tasks, professionals can use familiar tasks and get a better indication of the children's natural communication, interests, and abilities. They will be familiar with these responses in classroom instruction. Time spent in obtaining a more complete profile of the child's communication will save time in vocabulary and message selection for Augmentative and Alternative Communication (AAC) devices and will result in more appropriate initial choices of AAC devices.

Where should the instrument be used?

This instrument fits into nearly any setting. Information is gathered from whatever setting is natural to the children, whether they are at home, at school, in the hospital, or in the community. This instrument recognizes that children's familiarity with the environment impacts what and how they communicate. This assessment includes home and school perspectives. In medical settings, the assessment of communication in the clinic would be vitally connected to the communication at home to which the patient will return.

Schools, as educational institutions where the children live and learn, are primary locations where the instrument can be used. However, the instrument can be used in designing home-based intervention programs which include children, parents, and speech-language pathologists. In hospital settings nurses, doctors, and other caregivers can use this instrument and better interpret the messages of children and adult patients with severe speech impairments.

How should the results be used?

The final result of completing the instrument together will be in planning instruction. Approaching intervention holistically (Poplin, 1995), professionals enable children to develop meaningful communication in real life situations. The team can identify purpose-filled activities in multiple settings as the children relate to important people in their lives rather than wasting time on repeated trials for individual wants and needs.

The team will delineate new roles of the child's communication partners. Too often children's conversations are dominated and terminated by the adults who do not understand them. As in a dance (Duchan, 1994), communication partners need to synchronize their movements with each other. The children and their communication partners must recognize the meaning of and allow for the other person's unique communication style. Together they are sensitive to and adapt to each other's cultural rules, understand and fulfill their rights and responsibilities in each conversation. Communication partners will respond to, direct, guide, comfort, inform, and praise the child's real communication.

The team may redesign the child's environment. Instead of relying on speech which the children cannot use, educators and speech-language pathologists can supplement the spoken language with alternatives the children can use (Beukelman & Mirenda, 1998). Some may benefit by learning to use sign language. Others need to have pictures and line drawings readily available to point to their messages. Still others can build on reading and writing skills. With many children, the team will need to explore the alternative electronic devices which speak messages these children most need. Together they can try out, locate, purchase, and plan strategies to use appropriate assistive technology. Each of these alternatives and needed strategies in everyday activities will be described in the child's Individual Education Program and become authentic ways to teach.

This profile brings into focus the social and academic messages the child needs most and the symbols which seem most accessible and meaningful. Based upon these past experiences, the team can better recommend strategies and devices which enable the child to clarify his/her messages. Together educators and speech-language pathologists can support the children's most easily produced communication in context and offer ways to augment and facilitate the use of alternative communication. Only with collaboration over time can the child build fluency in communication with multiple people on multiple topics.

The instrument becomes a vehicle for improving transitions children and educators experience when they move from one setting to another. The instrument is designed to become a guide to collaboration between the children's new educators, aides, speech-language pathologists and parents. As they understand what and how the children communicate, the new team can begin to plan instruction for their students, maximizing their interests, augmenting their existing communication strengths, and using effective alternative communication.