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Social Networks - Frequently Asked Questions

 

23 Frequently Asked Questions about
Social Networks: A Communication Inventory for Individuals with Complex Communication Needs and Their Communication Partners



I. General Information about the Social Networks Communication Inventory

II. Information for individuals with complex communication needs and their family members

III. The Social Networks Communication Inventory as a tool for tracking progress and outcomes

IV. The Social Networks Communication Inventory as a tool to support recommendations and applications for speech generating devices

V. General Information about the Social Networks Video and DVD

VI. Administration Tips for Interviewers



I. General Information about the Social Networks Communication Inventory

FAQ #1: Why do we need to know about a person's social networks?

At the heart of the Social Networks Communication Inventory (Social Networks) are the principles of functional goal-setting and person-centered planning. These are what guide the individual and his or her closest communication partners towards the most effective communication strategies and technologies not only to meet their daily communication needs, but also to enhance their participation. From this perspective, it is crucial to develop a clear picture of a person's current communication life. Only then do we have the foundations from which to help him/her develop a wide and effective social networks within which to communicate comfortably and effectively on any topic of interest. Since no two people with complex communication needs (and no two communication partners) are the same, it is necessary to tailor intervention plans to meet each individual's unique circumstances - including their unique social and interactional circumstances.

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FAQ #2: How is the Social Networks Communication Inventory different from other AAC assessment or screening tools?

Social Networks addresses the social, interactional and participatory dimensions of the communication worlds of people with complex communication needs and their communication partners. As such, it fits within a Participation Model of AAC assessment and extends the focus of models that address Candidacy and Communication Needs. In employing Social Networks, one is attempting to provide, for team inspection, the big picture of an individual's current social-interactional life with his/her current and potential communication partners. This is achieved through conducting interviews with individuals with severe communication difficulties, their family and clinicians (and potentially with anyone else who interacts regularly with the person at the center of the social network being investigated).

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FAQ #3: Is Social Networks the only screening and assessment tool clinicians need to use?

In a word, no. There are many different types of assessment and screening that should be undertaken before developing an intervention plan for an individual with complex communication needs. These may include the use of specific protocols to assess motoric capabilities, cognitive capacities, sensory and perceptual acuity, current communication needs and abilities, and levels of linguistic and literacy development, along with an evaluation of existing environmental and social barriers to access. The Social Networks Communication Inventory may help teams to compile data from these other tools in ways that are more meaningful and lead more directly to intervention planning. Since Social Networks is designed to give a broad picture of an individual's current communication world and to help formulate (and reformulate over time) team goals, you may want to consider it as a way to compile and organize data from multiple sources while taking into account the perceptions of important stakeholders.

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FAQ #4: So, generally speaking, how does Social Networks, complement other tools?

The Social Networks Communication Inventory acknowledges and addresses the multimodal nature of communication and recognizes that the social variables of context, partner, topic, time and purpose not only affect interaction patterns but also determine which communication modalities and techniques will be used for any two individuals in interaction. This tool, therefore, helps to contextualize and interpret the information drawn from other AAC assessment and screening tools by recasting these data and by collecting additional information that enables teams to establish functional intervention goals that reflect person-centered, participation frameworks while addressing the requirements of funders and families.

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FAQ #5: What populations may benefit from the use of Social Networks Communication Inventory?

The tool is appropriate for individuals who have complex communication needs, independent of their age, diagnosis or current functional abilities. To date, we know clinicians have used Social Networks with individuals who have a wide range of developmental and acquired disorders, including aphasia, apraxia, autism, cerebral palsy, developmental delay (unspecified), Down syndrome, dysarthria, dual sensory impairment, multiple sclerosis, severe cognitive/linguistic challenges and traumatic brain injury. The Inventory assists in identifying a person's communication repertoire and strengths as well as existing communication barriers. It systematically involves the individual (if possible) and primary communication partners, and seeks to strengthen and/or build an individual's social networks.

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FAQ #6: Is it only clinicians who are finding the Social Networks Communication Inventory useful?

No. In fact individuals from multiple stakeholder groups are using the Social Networks Communication Inventory in various ways: (1) clinicians, (2) researchers and graduate students (communication disorders, special education and severe handicaps), (3) teachers in university programs, (4) professionals giving workshops on severe communication disorders (e.g., in medical schools, AAC conferences), (5) individuals/family members/advocates who are trying to get services/equipment to support communication efforts and (6) speech-language pathologists and teams who prepare funding requests for speech generating devices.

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II. Information for individuals with complex communication needs and their family members

FAQ #7: Why is person-centered planning so very important?

Person-centered planning is widely accepted as a preferred intervention model for persons with disabilities, including those with complex communication needs. The Social Networks Communication Inventory recognizes that successful communication interventions are most likely to occur when the individuals' preferences and goals are primary. Social Networks uses Circles of Communication Partners as a way to help conceptualize and organize the intervention process. Person-centered planning is key to a social networks approach and reflects a strong belief that individuals with complex communication require ways to communicate that enable them to express their unique personalities and preferences. By emphasizing person-centered planning, Social Networks provides a systematic way for the individual with complex communication needs to be "heard."

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FAQ #8 What value do family members see in using a social networks approach to intervention?

Family members and caregivers say that the Social Networks Communication Inventory has helped them understand the importance of using a variety of modes of communication and enabled them to think about different strategies that are being used at home. They also report being better able to understand how a speech generating device might be used most effectively and why it is essential in some circumstances, even if they rarely use it at home. Family members have also reported that Social Networks helps them think ahead and begin to plan for "tomorrow," rather than focus all their attention on "today." Parents and spouses have also said that going through the Social Networks process helped them understand that different people in their family members life had different perspectives about what was needed and how to approach solutions.

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FAQ #9: How can the Social Networks Communication Inventory help families advocate for appropriate services?

Individuals with complex communication needs are denied services for a myriad of reasons, depending upon their age and disability type. When services are not provided, it can have a negative impact on not only the individual's communication abilities, but also on his or her day-to-day quality of life and independence. For example, in schools and rehabilitation facilities, some children or adults may not be seen for speech-language therapy services because they are not "talking." While this is patently absurd, it still happens despite the Speech-language Pathology Scope of Clinical Practice (ASHA) that clearly states that augmentative communication is within the scope.

Social Networks is an assessment and intervention planning tool that helps illustrate how various types of approaches to communication can enhance an individual's interactions across partners and contexts. In addition, Social Networks requires that family members participate in the assessment and intervention planning process, which enables them to directly advocate for an individual with complex communication needs.

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FAQ #10: How can Social Networks help a family get an SGD?

As discussed in the previous question, Social Networks is useful in demonstrating the need for various augmentative approaches to communication. It helps to systematize information in a way that allows it to be used effectively as supportive clinical evidence in advocacy cases. Funding agencies, such as Medicare, require that requests for funding include a strong rationale for the functional use of a speech generating device to support daily communication. The Circles of Communication Partners show the variety of partners and context in which communication occurs and can make a strong case for the use of a speech generating device, especially in circles 3 and 5 with less familiar or unfamiliar partners.

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III. The Social Networks Communication Inventory as a tool for tracking progress and outcomes

FAQ #11: Can the use of the Social Networks Communication Inventory assist teams in setting goals for AAC intervention that enhance communication?

Yes. The goal of Social Networks is not only to improve the quality of the communication of the individual with complex communication needs, but also to improve their partners communication efforts. (Put another way, the goal is to improve interactions, not individuals.) 'Social networks' are networks of interaction and communication exchange. The best and most obvious starting point for assessing effectiveness of day-to-day communication, therefore, is to look at the current strengths and weaknesses of communicative interactions within an individual's current set of social networks, and use this information as the basis for planning for future improvement and expansion of networks, topics, technologies and techniques.

It is impossible to take a 'one-size-fits-all' approach and expect to provide appropriately nuanced interventions. Only by understanding the 'social-network present' are we able to plan for the 'social-network future' and the supports that are required for individuals with complex communication needs to experience successful interactions throughout their daily life.

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FAQ #12: So, what sorts of decisions do Social Networks help teams to make?

Social Networks seeks to provide a 'big picture' assessment that will assist individuals with complex communication needs and their partners to make informed decisions about:
(a) the range and efficacy of current communication techniques and strategies,
(b) immediate goals for improving communication trouble spots (i.e., improving the quality of currently existing social networks, and/or expanding social networks of communication),
(c) the advantages and disadvantages of trying new tools and techniques,
(d) any skills training that may be necessary (for the individual or their partners),
(e) when and how to assess the efficacy of proposed interventions, and
(f) long term planning for future communication needs.

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FAQ #13: Are there certain AAC devices, tools or techniques that people with complex communication needs can use effectively across all circles of communication partners and contexts of interactions?

Research using Social Networks shows that many high-tech device users tend to use their devices in only one or two circles of communication partners with a very limited set of individuals. They also always include body-based means (gesture, gaze and vocalization) among their most used communication modes across communication partners and circles. Highly proficient device users still tend to select among body-based modes, low-tech devices, and different forms of high-tech device depending on context, topic, purpose and communication partner.

Importantly, many proficient device users require more than one high tech device in order to meet the exigencies of a diverse range of social and physical contexts (see Confessions of a Multimodal Man on the Social Networks DVD). Assessments like Social Networks help to determine whether the current arsenal of tools and techniques is effectively and efficiently meeting both the current communication needs and the current social-psychological needs of an individual and his/her communication partners across contexts.

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IV. The Social Networks Communication Inventory as a tool to support recommendations and applications for speech generating devices

FAQ #14: Can the Social Networks Inventory help determine the features of a speech generating device and other AAC technologies that may help a client?

Yes and No. This is not one of the main questions. Social Networks is designed to answer, however Social Networks enables you to compile information that is crucial to the speech generating device and other AAC technologies decision-making process. Social Networks does not presume that a client will need or use a high-tech AAC device, since the individual's immediate communication needs may instead be met more effectively by natural ability interventions, environmental adaptation interventions, social interventions, or low technology interventions. Social Networks can help determine, for instance, that a particular individual needs a computerized device with speech output in order to speak with unfamiliar partners, even though she doesn't need it with close friends and family who find her speech and gestures intelligible. It can also help determine what sort of content domains a device may need to address, and what constraints and supports may have an impact on device use.

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FAQ #15: If the person already has a speech generating device, why do we need to use the Social Networks Communication Inventory?

As the answer to the previous question indicates, it is not the goal of Social Networks to ensure that every person with complex communication needs has an AAC device, uses a communication book, etc. Instead, Social Networks seeks to illuminate the communication world of individuals and their communication partners in order to allow teams to make informed decision concerning communication needs, goals, tools and intervention. AAC assessments and AAC interventions are typically ongoing and the job is not finished once a person has, learns to use and subsequently uses a device or other strategies that supplement speech. Everyone's communication worlds are subject to continual change. Thus, each person's social networks may expand or contract, while interests and concerns may change, life circumstances may radically alter, and one's preferred modes of presenting oneself physically, socially and communicatively may evolve. For a person with complex communication needs, each substantial change can require a new assessment and intervention.

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V. General Information about the Social Networks Video and DVD

FAQ #16: Why is it important to see the Social Networks video, which shows the social networks of five individuals with complex communication needs?

A picture is worth a thousand words; and a video is worth a million. The Social Networks video highlights five individuals (ages 3 to 60 something) with cerebral palsy and/or autism. It shows how each communicates in his/her everyday life using a variety of tools and techniques. It shows how different partners interact and how communication books and boards, speech generating devices and manual signs are all used to effectively supplement the natural speech and gestures of each individual. The video/DVD highlights the parent's role as part of the intervention team and shows how the Social Networks Communication Inventory makes them feel included and informed. It also shows why it is crucial to involve the individual with complex communication needs themselves in the interview process. Finally, the video/DVD demonstrates the importance of attending to an individual's communication style and preferences and how a person's communication strategies will vary with family, friends, acquaintances, paid workers and strangers/unfamiliar partners.

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FAQ #17 Why might I want to use the Social Networks DVD, which features the Social Networks video plus Michael B. Williams as the "Multi-modal Man"; Elisa Kingsbury sharing "Hints for Administering the Social Networks Communication Inventory and David P. Wilkins reflecting on the use of Social Networks from the perspective of a linguist?

Each segment requires a different answer. You'll want to see Michael B. Williams talk about why he uses two speech generating devices, email, gestures, speech and an alphabet board. Audiences find this talk funny, informative and extremely motivating. It is particularly important for demonstrating how Michael consciously monitors context, topic and conversational partner to determine which communication tools to pull out of his rich armory.

Elisa is a school-based (Bridge School in California) speech-language pathologist with extensive experience administering Social Networks to individuals with complex communication needs, family members and professionals (teachers, instructional aides, speech-language pathologists). A member of the Berkeley Study group, she has participated in the development of the tool and talks frankly, "clinician to clinician" about what she has learned using the tool.

David P. Wilkins, Ph.D. discusses his view of human communication and its multicultural flavor using his work with Aboriginal communities in Australia. He describes Social Networks as a very useful tool to use with people with aphasia and talks about how Social Networks reflects current trends in psycholinguistic theory. The interview sets Social Networks in a broader theoretical context that recognizes that: (a) we are all multimodal communicators; (b) communicative interactions are what builds and maintains social networks; and (c) language use, not language structure, is of key importance to understanding language development, communication interventions, and the 'natural ecology' of communication systems.

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VI. Administration Tips for Interviewers

FAQ 18: Are there ways to help interviewees develop more considered answers?

Some of the questions asked in the Social Networks interview require a certain amount of deep reflection. Thus, you may wish to give adult interviewees (i.e., persons with complex communication needs, family member, paid workers) a list of questions in advance to help them understand that the basic insights of Social Networks apply to everyone. [NOTE: It is especially advisable to ask clinicians to consider these questions to develop their appreciation of what Social Networks as a tool is trying to accomplish.]

  • Who are the people I have regular interactions with? (parents? friends? the guy at the grocery store? etc.)
  • What topics do we cover in our interactions? (emotions? food? baseball? schoolwork?)
  • What is the goal (or goals) of each distinct interaction? (pleasure? instructing someone how to do something? getting a specific need met? sharing knowledge? sharing opinions, feelings ...)
  • What tools and techniques do I use to communicate with various partners in different contexts? (whom do I: speak to? use gesture with? yell at? phone? e-mail? instant message? etc.)
  • Am I using the most efficient means for addressing the goals and topics of my various social encounters? (why does my friend always seem to misunderstand my jokes? why do people think I'm angry when I'm not? why don't people reply to my e-mails? etc.)
  • What tools and techniques do other people use with me? (Who winks conspiratorially at me? Who speaks quietly with me? Who pats me on the back? Who e-mails me? etc.)
  • What people do I have trouble understanding? Is it because of the techniques they use?
  • How effective are my various interactions? Can some, or all, of them be improved?

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FAQ #19: Can Social Networks help build consensus among team members?

What Social Networks provides is a complex, multi-perspective view on the communication world of a single individual. As far as the Social Networks Communication Inventory is concerned, no single perspective is better than another. In addition, there is no absolute need for the different perspectives to be reconciled. Since informants are positioned in their own particular node within that individual's current social network, each informant has his/her own uniquely informative perspective on that communication world. Thus, perspectives overlap at some points and differ at others. Each interactional pair (social dyad) in the network will have its own properties; there will be differences in frequency of interaction, topics of interaction, modes of interaction and so on. It is easier to build consensus when each member of the team understands the unique perspectives of the others.

In other words, no one person in the network has an objective view of all the different variables in the system, and this is precisely why Social Networks attempts to incorporate as many views as possible. By bringing the individual views together, not only do we get a clearer, more focused view of the communication life of the person at the center of the network, but we also make it easier for all stakeholders to be included in decision-making processes as informed participants.

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FAQ #20: How can Social Networks help deal with discrepancies, conflicting answers and different perspectives?

Social Networks treats all sources of information as important ways of informing team discussion, setting goals and planning. It is often the points of apparent discrepancy between interviewees that provide the most fertile ground for uncovering important differences in assumptions concerning the communication capacities of the person with complex communication needs. Moreover, conflicting responses often help to identify and clarify communication trouble spots that are experienced by each of the stakeholders, not just the person at the center of the network. As long as everybody's communication rights are being looked after, discrepant answers provide no problem.

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FAQ #21: Is it okay to change the order of presentation of questions and topics from the Inventory?

Yes. In fact, on the Social Networks DVD, Elisa Kingsbury recommends beginning with the Circles of Communication Partners section. The important thing is to make a note of how you administer the tool so that you can do it the same way the next time. A major value of Social Networks is that it tracks progress over time, so you want to maintain its reliability and validity over time.

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FAQ #22: Is it okay to change the manner of presentation of questions from the Inventory?

No, unless you make very specific notes about how you have changed the way you present each question and write down the rationale for doing so. As noted in FAQ #21, the tool is meant to be administered to the same person periodically. Thus, you must make note of any changes you make to ensure reliability and validity of its use over time, even when others take over its administration.

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FAQ #23: What is the value of each section of the Social Networks Inventory?

What if I chose to omit some sections? Each section has a very specific reason for being included in the Social Networks Communication Inventory. These are described in the Social Networks Manual. Clinicians, teachers, researcher and advocates may omit sections, but they should do so only after they develop a clear understanding of why each section was included, and write down their rationale for omission of any section.

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