Introduction

Deafblindness is the condition of little or no useful hearing and little or no useful sight. Different degrees of vision loss and auditory loss occur within each individual, thus making the deafblind community unique with many types of deafblindness involved. Because of this inherent diversity, each deafblind individual’s needs regarding lifestyle, communication, education, and work need to be addressed based on their degree of dual-modality deprivation, to improve their ability to live independently.

Helen Keller was a well-known example of a deafblind individual. To further her lifelong mission to help the deafblind community to expand its horizons and gain opportunities, the Helen Keller National Center for Deaf-Blind Youths and Adults (also called the Helen Keller National Center or HKNC), with a residential training program in Sands Point, New York, was established in 1967 by an act of Congress.

Furthermore, the deafblind community has its own culture, creating a community of deafblindness similar to the deaf community and the blind community. Each community is made up of a group of individuals who have undergone similar experiences and have a homogeneous understanding of what it means to be deafblind, even with a large diversity of unique backgrounds. Some deafblind individuals view their condition as a part of their identity.     (Wikipedia, n.d.)

Etiology

The medical condition of deafblindness occurs in different forms. For some, this condition might happen congenitally from birth as a result of genetic defect, for others it happens suddenly due to a form of illness or accident that results in a modality deprivation of either vision or hearing, or both. A person might be born deaf and become blind at a later stage in life, or vice versa. In any given case of deafblindness, many possible onsets and causes of this condition exist; some happen gradually, others happen unexpectedly and suddenly.  The diagnosis of deafblindness could be medically classified into specific types based on one’s symptoms and causes.

The two overarching types of deafblindness are congenital and acquired.  (Wikipedia, n.d.)

Identification and Assessment

Early Identification and Early Intervention

Identification. Federal regulations do not specify levels of vision or hearing loss for the identification of deafblindness (Chen, 2004). Although there is no mandated newborn screening for Page 72 of 219 vision loss, the National Academy of Ophthalmology and the National Academy of Optometry recommend that all children receive a vision examination between ages 6 months and 30 months (Chen, 2004). Vision evaluations should include both an ophthalmological evaluation and a functional vision evaluation (Holte, Prickett, Van Dyke, et al., 2006). The provision of newborn hearing screening supports early identification of hearing loss and subsequent referral for early intervention services. Preparing educators of children who are deaf or hard of hearing to recognize signs of possible vision loss, including signs of typical and atypical visual behaviors, becomes one of the strongest mechanisms for identifying deafblindness (Chen, 2004; Murdoch, 2004). The state deafblind projects, funded through OSEP, include a child-find mission. To improve the identification of children who are deafblind, the National Consortium on Deaf-Blindness (NCDB) developed a self-assessment guide to support the projects in early identification and referral (Malloy et al., 2009).

Intervention professionals. Early intervention is critical to reducing the profound developmental disadvantages faced by children who are deafblind (Chen, Alsop, & Minor, 2000; Jatana et al., 2013; Michael & Paul, 1991; Murdoch, 2004). Infants and young children who are deafblind are less responsive to caregivers, exhibit few initiations to interact, have few opportunities to learn incidentally due to reduced input from both distance senses, and struggle to develop early concepts (Chen, 2004; Chen & Haney, 1995; Chen, Klein, & Haney, 2007; Holte, Prickett, Glidden, et al., 2006).

The complex and heterogeneous needs of children who are deafblind call for highly specialized and individualized services provided by collaborative teams that recognize the critical role of the family in creating optimal outcomes for the children (Holte, Prickett, Glidden, et al., 2006; Murdoch, 2004; Schwartz & McBride, 1995; Silberman et al., 2004). Caregivers benefit from preparation in recognizing the child’s cues for interaction, resulting in higher levels of adult responsiveness. They also benefit from learning to establish sequenced routines that elicit anticipation in the child and opportunities for adults to contingently respond (Berg, 2006; Chen, Klein, & Minor, 2008; Murdoch, 2004). Intervener services in the home have been found to accelerate the child’s development beyond what would be expected due to typical maturation across multiple areas of development, including a marked increase in the frequency and complexity of communication and an associated reduction in the frequency of self-stimulatory behaviors (Watkins, Clark, Strong, & Barringer, 1994).

There is a moderate level of evidence that early intervention services, including those offered in the home, reduce the developmental disadvantages posed by deafblindness.

Assessment

The sole use of standardized assessment instruments is inappropriate for children who are deafblind (C. Nelson, van Dijk, Oster, & McDonnell, 2009; Silberman et al., 2004). This is because standardized instruments seldom include children who are deafblind as a norming group. Additionally, standardized instruments require precise administration procedures that may not allow enough flexibility to accommodate the needs of children who are deafblind during the assessment process. Great caution should be applied while estimating the abilities of children who are deafblind (Geenens, 1999). To identify additional disabilities, the criteria used for children with other disabilities may not be appropriate to apply for assessing deafblind children for an additional disability (Hartshorne, 2011; Johannson, Gillberg, & Rastam, 2010). Many children who are deafblind function differently across environments; thus, effective assessments are conducted across multiple and natural environments (i.e., those known to the child) with input from multiple adults (Chen, Rowland, Stillman, & Mar, 2009; McLetchie, 1995; Stremel & Schutz, 1995). Direct assessment should be conducted by or in the presence of at least one adult who knows the child well (C. Nelson, van Dijk, McDonnell, & Thompson, 2002).

Informal assessment instruments and procedures, including dynamic assessments, are critical to capturing a complete understanding of the child’s abilities (Chen et al., 2009; Eyre, 2002; Page 67 of 219 Holte et al., 2004; C. Nelson, Janssen, Oster, & Jayaraman, 2010). Early childhood assessment should address the identification of the strengths and needs of the child and the family (Chen et al., 2009). Person-centered assessment approaches (a) include input from family, friends, and the individual who is deafblind and (b) support the identification of valued life outcomes and the necessary supports to achieve those outcomes (McNulty, Mascia, Rocchio, & Rothstein, 1995; Romer & Romer, 1995; Schwartz, 1995; Stremel, Perreault, & Welch, 1995; Stremel & Schutz, 1995).

Assessment of children who are deafblind should include functional vision and hearing evaluations to augment information from the audiology and ophthalmology reports as well as an assessment of the child’s preferred learning channels as part of a learning media assessment (IDEA, 2004; Koenig & Holbrook, 1995; McKenzie, 2007, 2009b; McLetchie, 1995; Michael & Paul, 1991). The visual, hearing, and tactile characteristics of current and potential future environments must also be assessed so that appropriate adaptations and accommodations can be determined (McLetchie & Riggio, 1997; K. Olson, Miles, & Riggio, 1999).

(Ferrell and Luckner, 2014. DB)

Communication

Deafblind people communicate in many different ways as determined by the nature of their condition, the age of onset, and what resources are available to them. For example, someone who grew up deaf and experienced vision loss later in life is likely to use a sign language (in a visually modified or tactile form). Others who grew up blind and later became deaf are more likely to use a tactile mode of spoken/written language. Methods of communication include:

• Use of residual hearing (speaking clearly, hearing aids, or cochlear implants) or sight (signing within a restricted visual field, writing with large print)
• Tactile signing, sign language, or a manual alphabet such as the American Manual Alphabet or Deaf-blind Alphabet (also known as “two-hand manual”) with tactile or visual modifications
• Interpreting services (such as sign-language interpreters or communication aides)
• Communication devices such as Tellatouch or its computerized versions known as the TeleBraille and Screen Braille Communicator.
• Tadoma, a tactile modality

Deafblind people often use the assistance of people known as support-service providers (SSPs), who help the deafblind with tasks such as routine errands, guiding the deafblind through unfamiliar environments, and facilitating communication between the deafblind person and another person.

Resource: Read about the Communication Modes within the Deafblind Community and their interpreting needs.

(Wikipedia, n.d.)

The following is adapted from: Center for Parent Information and Resources, (2015). Deaf-Blindness, Retrieved 4.1.19 from https://www.parentcenterhub.org/deafblindness/#stat Newark, NJ, Author. Public domain

Finding Help for Children with Deaf-Blindness

Children birth to age 3 | Very young children (birth up to age 3) who are deaf-blind are typically eligible for early intervention services under the Infants and Toddlers with Disabilities program of IDEA (also called Part C). These services are extremely important to children with deaf-blindness and their families, for the services are designed to address the child’s developmental and learning needs. Parents are involved in deciding what services their child and family need to address the challenges of deaf-blindness. Services are either provided free of charge to families or on a sliding cost scale based on the family’s income.

School-age children, including preschoolers | When children with deaf-blindness reach the age of 3, they transition into special education services under Part B of IDEA. Special education services are provided free through the public school system. Even if a child with deaf-blindness is not in school yet (for example, a four-year-old), the school system is still responsible for making sure that special education and related services are available to the child.

Because deaf-blindness causes severe communication and other developmental and educational needs, it’s very important for children with deaf-blindness to receive special education and related services to address their individual needs.

(Parent Information Center & Resources, 2015)

The following text is an excerpt from: Ferrell, K. A., Bruce, S., & Luckner, J. L. (2014). Evidence-based practices for students with sensory impairments (Document No. IC-4). Retrieved from University of Florida, Collaboration for Effective Educator, Development, Accountability, and Reform Center website: http://ceedar.education.ufl.edu/tools/innovation-configurations/  DeafBlind- pgs 64-84  (There are no copyright restrictions on this document) Retrieved from http://ceedar.education.ufl.edu/wp-content/uploads/2014/09/IC-4_FINAL_03-30-15.pdf#page=64 

Evidence-Based Practices (EBPs) for teaching students with Deafblindness

Deafblindness is the smallest disability group and also the most heterogeneous. Children and young adults differ by type and level of hearing and vision loss, age of onset of vision and hearing loss, physical and health issues, cognitive functioning, expressive and receptive communication forms, and educational histories. Like all learners, deafblind children are also diverse by race, ethnicity, culture, family (including the language of the family), community characteristics, and socioeconomic status.

Vision and hearing, which are important senses for learning, reinforce each other. Thus, one cannot understand the impact of deafblindness by adding up the effects of the vision loss and the effects of the hearing loss. The effect of deafblindness is multiplicative, not additive. Deafblindness may be congenital or adventitious. Many individuals who are congenitally deafblind will struggle to become linguistic, but most individuals who are adventitiously deafblind will be linguistic. Individuals who are adventitiously deafblind will require extensive supports while learning new communication and literacy forms (e.g., sign language, Braille). Deafblindness creates serious challenges not only to access but also to engagement. Little incidental learning occurs due to the loss of distance senses. Touch is an important sense for learning (Silberman, Bruce, & Nelson, 2004). There is evidence for the effectiveness of both child-guided and systematic instructional approaches with children who are congenitally deafblind.

Administration

Each IEP team should include a member who is knowledgeable about the impact of deafblindness and also about specialized communication methods and instructional approaches to assist with assessment, instructional planning, and program implementation (Parker, McGinnity, & Bruce, 2012; Riggio, 2009; Riggio & McLetchie, 2008). Deafblindness is the lowest incidence disability; thus, most educational professionals receive little if any information about how to instruct children who are deafblind. It is insufficient to have team members with expertise only in visual impairment or in hard of hearing/deafness because the impact of deafblindness is far greater than one can surmise from adding the effects of vision and hearing loss. This is because deafblindness involves both distance senses, thus greatly limiting access to others and information, observation, and incidental learning. When a district has no individual with deafblind expertise, the state deafblind project may provide information about technical assistance and PD opportunities. For more information on the competencies required by teachers and paraprofessionals serving children who are deafblind, see McLetchie and Riggio (1997) and Riggio and McLetchie (2001).

Instructional groups must be small enough to allow the child who is deafblind to fully access information, engage in the lesson, and receive feedback (Parker et al., 2012; Riggio, 2009; Riggio & McLetchie, 2008). Even if children have significant residual vision and/or hearing, small groups will support with locating the speaker or communication partner while keeping background sounds and visual clutter to a minimum. Learners who primarily rely on tactual input for learning may require 1:1 instructional arrangements for most of their lessons to support access and engagement and to allow for frequent tactual feedback.

The evidence for these administrative recommendations is at the emerging level due to a lack of research to support these practices. Thus, the professional literature written by experts in the field who have classroom and administrative experience must be used as evidence to support these emerging practices until research has been conducted to provide additional evidence.

Assistive Technology

Children and youth who are deafblind need AT, such as alerting devices, to support communication, orientation and mobility, participation in content-area instruction, and life skills. The AT may be low tech (e.g., hand-held magnifier) or high tech (e.g., devices with refreshable Braille displays; Prickett & Welch, 1995). The selection of AT and instruction on its use must be grounded in thorough assessment, including learning media assessment, with the goals of enhancing access and engagement across all environments and in all areas of the individualized and general curriculum.

Parents of children who are deafblind may value cochlear implantation outcomes that are unimportant to parents of children who are deaf alone due to the impact of deafblindness (e.g., isolation, reduced environmental feedback). These parents have provided strong evidence for improvements in attention; interactions with objects; listening, which may break down isolation and enhance engagement; responsiveness; increased awareness of environmental sounds, which may improve safety; and increased vocalizations (Bashinski, Durando, & Thomas, 2010; Chute & Evans, 1995; Damen et al., 2006; Dammeyer, 2008; Liu et al., 2008; Southwell, Bird, & Murray, 2010). Direct instruction of children with cochlear implants and their parents on detecting environmental and speech sounds, among other skills, is essential to maximizing the potential benefits of implantation. Positive outcomes are more likely if the cochlear implant is consistently worn during waking hours, if daily function checks are performed on the implant, and when strategies introduced through direct instruction are practiced (Stremel, 2009).

The outcomes of cochlear implantation are highly variable, and parents of children who are deafblind value non-speech outcomes. Other areas of AT have not been as well researched with this population, resulting in an emerging level of evidence.

Communication

Communication is one of the more developed areas of research in the field of deafblindness. Highly individualized educational interventions to address the development of communication skills should be

• embedded into every activity
• provided in the context of natural environments and
• complemented with ample opportunities for social interaction

(Goetz, 1995; Goodall & Everson, 1995; McLetchie, 1995; Stremel & Schutz, 1995; Wheeler & Griffin, 1997; White, Garrett, Kearns, & Grisham-Brown, 2003)

Comprehensive communication programming should address

• forms/modes
• intents/functions
• content/vocabulary
• context, including the establishment of activities and routines, the physical environment, communication partner skills, and pragmatics

(Bashinski, 2011; Bruce, 2002; Crook, Miles, & Riggio, 1999a, 1999b; Goodall & Everson, 1995; McKenzie, 2009a; E. K. Miller, Swanson, Steele, Thelin, & Thelin, 2011).

There is research evidence for the efficacy of both child-guided approaches (limited evidence) and systematic instruction for specific outcomes (moderate evidence).

Child-guided approaches. Child-guided approaches, such as the van Dijk Curricular Approach (MacFarland, 1995), have been applied to support overall communication development. Child-guided strategies include establishing trust, responding to the child’s interests and communicative attempts, communicating using the child’s expressive forms, selecting representations that are salient to the child, using different forms of dialogue, and using coactive techniques (Crook et al., 1999b; L. Hodges, 2002; Horsch & Scheele, 2011; Janssen, Riksen-Walraven, & van Dijk, 2002, 2003a, 2003b, 2004; MacFarland, 1995; C. Nelson et al., 2009; K. Olson et al., 1999; Pease, 2002; Pittroff, 2011; Rodbroe & Souriau, 1999; Silberman et al., 2004; van Dijk, 1965, 1967; Wheeler & Griffin, 1997).

Systematic instructional approaches. Systematic instructional approaches have been effective in increasing the rate and variety of communicative intents/functions that children who are deafblind express (Brady & Bashinski, 2008; Heller, Ware, Allgood, & Castelle, 1994; Schweigert & Rowland, 1992; Sigafoos et al., 2008; Wolf Heller, Allgood, Davis, et al., 1996; Wolf Heller, Allgood, Ware, Arnold, & Castelle, 1996; Wolf Heller, Allgood, Ware, & Castelle, 1996). Whatever approach is used, individualized programming should reflect an understanding of the levels of communicative development and the process of symbolization to ensure that the educational team provides appropriate communication intervention (Bashinski, 2011; Bruce, 2005a, 2005b; Hartmann, 2013; MacFarland, 1995; E. K. Miller et al., 2011; Pittroff, 2011; Rowland, 2011; van Dijk, 1967; Vervloed, van Dijk, Knoors, & van Dijk, 2006).

There is moderate evidence of the effectiveness of tactile approaches and strategies to improve communication in learners who are deafblind (Chen & Downing, 2006; Chen, Downing, & Rodriguez-Gil, 2001; Downing & Chen, 2003; Klein, Chen, & Haney, 2000; Mathy-Laikko et al., 1989; McLetchie & Riggio, 1997; Miles, 2003; Murray-Branch, Udavari-Solner, & Bailey, 1991; Page 71 of 219 Rowland & Schweigert, 1989, 2000; Rowland, Schweigert, & Prickett, 1995; Sigafoos et al., 2008; Trief, Cascella, & Bruce, 2013). Touch cues are a tactile form of communication. For example, while preparing to put on a child’s pair of glasses, the teacher may provide an opportunity for the child to touch the glasses (while explaining what is about to happen) and then provide a touch cue to the child’s temple prior to placing the glasses. Many children who are deafblind will require sign language presented in a tactual form. They will all need instructional materials and approaches that are tactual. Miles (2003) explained the importance of hands (including hands serving the function of eyes) to learners who are deafblind.

Tangible representations are a viable communication form for prelinguistic children who are deafblind (Bruce, Trief, & Cascella, 2011; Cascella, Trief, & Bruce, 2012; Murray-Branch et al., 1991; Prickett & Welch, 1998; Rowland, 1990; Rowland & Schweigert, 1989, 2000; Trief, 2007, 2013; Trief, Bruce, & Cascella, 2010; Trief, Bruce, Cascella, & Ivy, 2009; Trief et al., 2013). Tangible representations may be three-dimensional (e.g., object representations) or two-dimensional (e.g., photographs).

There is a limited, although rapidly growing, body of evidence that adult communication partners can use to improve responsiveness, turn taking, attunement, and other communicative skills of children who are deafblind with systematic demonstrations and coaching (Chen et al., 2001; Janssen et al., 2003a, 2003b, 2004; Janssen, Riksen-Walraven, van Dijk, Huisman, & Ruijssenaars, 2011; Janssen, Riksen-Walraven, van Dijk, Ruijssenaars, & Vlaskamp, 2007; McLetchie & Riggio, 1997).

Life Skills

There is strong evidence that systematic instruction that is grounded in behavioral principles has been effectively applied to improve daily living skills in children and youth who are deafblind. J. K. Luiselli (1988a) evaluated different types of prompting procedures and praise to support the initiation of eating skills. In a second study, J. K. Luiselli (1988b) successfully addressed inappropriate behavior that occurred during eating by using praise and favorite foods to reinforce appropriate behavior and interrupting procedures to address inappropriate behaviors. In a third study, J. K. Luiselli (1993) taught self-feeding to two children who were deafblind using prompting and prompt-fading, reinforcement, and response-interrupting procedures to address carefully defined target behaviors. Lancioni (1980) applied behavioral principles, such as reinforcement and punishment, to teach independent toileting. McKelvey, Sisson, Van Hasselt, and Herson (1992) investigated the effectiveness of teaching the entire sequence of a dressing routine, as opposed to chaining, to one child participant who was deafblind. They delivered instruction, graduated guidance, and praise during the dressing sequence but tangible reinforcement only upon completion of the sequence. Venn and Wadler (1990) described a 4-year project that applied behavioral principles to address home management, personal, and other skills in four youth who were deafblind within an independent living setting. In these studies, the selection of a well-defined target behavior and careful consideration of prompting and reinforcement levels were important components leading to successful student outcomes. The independent living curriculum developed by Loumiet and Levack (1993) can be adapted for students who are deafblind.
Much of the research evidence on the achievement of life skills by children who are deafblind is in the area of orientation and mobility. Systematic instruction, especially in the context of desirable and functional activities, has been found to result in positive learning outcomes (Lancioni, Bellini, & Oliva, 1993a, 1993b; Lancioni, Bellini, Oliva, Guzzini, & Pirani, 1989; Lancioni, Mantini, Cognini, & Pirani, 1988; Lancioni, Olivia, et al.,1988; Lancioni, Oliva, & Barolini, 1990; Lancioni, Oliva, & Bracalente, 1994; Lancioni, Oliva, & O’Reilly, 1997; Lancioni, Oliva, & Raimondi, 1992; Lancioni, O’Reilly, & Campodonico, 2000; Lancioni, O’Reilly, Campodonico, & Mantini, 1998; Lancioni et al., 2007; Parker, 2009).

Orientation and mobility instruction for students who are deafblind must be modified to reflect the impact of deafblindness, potential balance issues, and unique and complex communication needs (Huebner & Prickett, 1996; Joffee, 1995; Joffee & Rikhye, 1991; Lolli, Sauerburger, & Bourquin, 2010). COMS must consider the experiential background of each individual who is deafblind because of the reduction in incidental learning due to deafblindness (Silberman et al., 2004). Some etiologies (e.g., CHARGE syndrome, Usher Syndrome Type 1) are associated with more pronounced issues with balance (Haibach, 2011; Lolli et al., 2010; Thelin, Curtis, Maddox, & Travis, 2011). Many individuals who are deafblind will not have sufficient hearing to access the speech of COMS. Thus, they may require the services of a sign language interpreter who may communicate in either visual or tactual sign language. The use of an interpreter will lengthen each lesson because travel and communication must sequentially occur. Youth who are deafblind also require specialized instruction for interacting with the public. COMS must modify the orientation and mobility curriculum and instructional techniques and the selection of devices for children and youth who are deafblind. For example, street-crossing techniques used with individuals who are deafblind are significantly different from street-crossing techniques used for those who are visually impaired. Devices that convert sounds to vibro-tactile output may be incorporated into travel.

COMS is the acronym for Certified Orientation and Mobility Specialist

There is strong evidence about the effectiveness of systematic instructional approaches within the daily living skill domain. This has also been shown to be of importance to participation in physical activities that must embed carefully constructed opportunities for communication. Within the area of orientation and mobility, there is a moderate level of evidence for the importance of systematic instruction and a limited level of evidence for the importance of specialized instructional techniques for individuals who are deafblind.

Literacy

The traditional view of literacy as reading and writing has been challenged in recent years because it excludes learners who are prelinguistic. A new, more inclusive view of literacy includes all learners (McKenzie & Davidson, 2007; Miles, 2005), begins at birth (Parker & Pogrund, 2009), and recognizes that the materials and media of literacy differ across learners. Literacy that is experienced through technology, such as speech-generating devices, is often called the new literacy (Emerson & Bishop, 2012).

Contemporary definitions of literacy view communication as supportive or part of literacy (McKenzie & Davidson, 2007). Daily schedules, story boxes, experience books, choice-making opportunities, and interactive home-school journals are among the literacy lessons of importance to prelinguistic learners who are deafblind (Blaha, 2001, 2002; Bruce & Conlon, 2005; Bruce, Randall, & Birge, 2008; Crook & Miles, 1999; MacFarland, 1995; Swanson, 2011).

Daily schedules. Also known as anticipation shelves or calendar systems, daily schedules are important to learning one’s routine, representations for activities within the routine, and left-toright sequencing. Each trip to the daily schedule provides an opportunity for a conversation. Story boxes.

Story boxes are collections of objects that relate to an experience or a book. While reading a story, the teacher may stop and allow time for the child to handle the objects, name the objects, or use the objects to respond to questions about the text.

Experience books. Known also as memory books, experience books are about the child’s personal experiences, are grounded in the child’s perspective, and are physically co-constructed with the child. For example, the child and teacher may gather items from the park and then co-construct a book about that experience, attaching one object to each page and then labeling in print and perhaps in Braille what it represents (for consistent reading by adults). While reading experience books, it is important to allow ample time for conversation to occur about each page (Bruce et al., 2008).

Choice-making opportunities. Making choices is an important aspect of literacy development (K. Olson et al., 1999). Authentic choice making only occurs if the child understands the representations, understands the choice-making process, and has true preferences from among the options displayed. Home-school journal.

The home-school interactive journal replaces the typical notes shared between parents and school staff. Each journal may be only a few pages long with each page representing an important activity experienced by the child that day (Bruce & Conlon, 2005). This lesson builds memory and distancing, which are important to symbolic development.

All learners benefit from a literacy-rich environment (McKenzie, 2009a). This environment may include, among other materials,

• books in print, Braille, and auditory formats
• tactile books
• labels
• interactive software paired with ample opportunities to communicate
• commercially produced books with appropriate tactile adaptations.

Learners who are deafblind require ample hands-on experiences to ensure that they understand the concepts expressed in books (Miles, 2005). This is because they have few, if any, opportunities to incidentally gain information by listening or observing. The van Dijk Curricular Approach includes sequential memory strategies and symbolic instructional strategies to support literacy development through a child-guided approach (MacFarland, 1995). McLetchie and Riggio (1997) articulated the competencies required by teachers in the area of communication for prelinguistic and linguistic Page 78 of 219 learners. The Paths to Literacy (2014) website (www.pathstoliteracy.org ) and Project Salute (2002-2005) website (www.projectsalute.net ) are additional resources on literacy development for children who are deafblind.

Most research studies on literacy instruction for deafblind children are descriptive studies; thus, evidence is emerging. There is a need for intervention studies that investigate effective instructional approaches and strategies in literacy. Because contemporary views of literacy include expressive and receptive communication, the narrative and essential components in the area of communication should be considered as an important complement to this area.

Mathematics

A review of the literature revealed no studies or peer-reviewed articles on teaching mathematics to children who are deafblind. Suggestions from the field of visual impairment are relevant to addressing some of the needs of deafblind learners. Kapperman and colleagues (2000) suggested that teachers while planning instruction in mathematics, consider

• the child’s background knowledge and experiences in relationship to key concepts of the lesson
• the vocabulary demands of the lesson
• the need for content modifications
• the selection of manipulatives to illustrate key concepts and aid in computation
• the adaptations that encourage active engagement in the lesson.

They also suggest that teachers be mindful of the need for consistent use of mathematical vocabulary such as terms for different operations and symbols. Because children who are deafblind use multiple receptive and expressive communication forms (e.g., verbalizations, sign language, photographs, line drawings, object representations), vocabulary must be expressed in the forms that are suitable for each child. When developmentally appropriate, children who are deafblind will require instruction on how to use the abacus, the Braille writer, and mental math for computation. There is a dire need for the field of deafblindness to produce research studies in the area of mathematics.

Placement/Inclusion

It is critical that any placement of choice offers the child who is deafblind opportunities to be an active participant in the general education curriculum and social interactions within the classroom. IDEA (2004) established the requirement to select the least restrictive environment for placement. A variety of placements is needed to address the diverse needs of this highly heterogeneous group of learners. Educational teams across all types of placements will benefit from the support of a deafblind specialist. Across placements, learners will require individualized communication supports, which may include paraprofessionals, interpreters, interveners, and COMS with specialized preparation in deafblindness (Riggo, 2009). Low adult-to-student ratios are essential to supporting access and engagement in any placement (Parker et al., 2012).

Collaborative teaming is essential to successful inclusive educational programming (Cloninger & Giangreco, 1995; Goetz, 1995; Romer & Byrne, 1995). No single person can know all that is needed to address the very complex needs of a child who is deafblind. In collaborative teaming, professionals share their expertise, teach others some aspects of their expertise, and engage in role release (Downing & Eichinger, 2011). In the inclusive setting, the individual with deafblind expertise is likely to be a consultant, a paraprofessional with special training in deafblindness, or an intervener. Interveners supplement the instruction provided by teachers and related service professionals by providing experiences to support the child to comprehend and engage in the curriculum. The intervener supports interactions between the child who is deafblind, general and special education teachers, and other children, with some also serving as sign language interpreters (Alsop, 2004; Alsop et al., 2010; J. Olson, 2004; Silberman et al., 2004; Watkins et al., 1994). Riggio and McLetchie (2001) detailed the specialized preparation needed by paraprofessionals serving children who are deafblind. Even when an interpreter or specially trained paraprofessional is on the educational team, the general education classroom teacher should create opportunities to directly interact with the child who is deafblind. This is important for creating a truly inclusive environment that communicates that all children are worthy of the teacher’s attention and instruction. When no team member with deafblind expertise exists within a school district, the state deafblind project should be contacted for advice about technical assistance.

Adults should support reciprocal interactions between children who are deafblind and their peers without disabilities by addressing environmental barriers to communication (Moller & Danermark, 2007); creating sustained opportunities for interaction; and providing direct instruction of interaction strategies (Downing & Eichinger, 2011; Goetz & O’Farrell, 1999; P. Hunt, Alwell, Farron-Davis, & Goetz, 1996; Ingraham, Daugherty, & Gorrafa, 1995; T. E. Luiselli, J. K. Luiselli, DeCaluwe, & Jacobs, 1995; Prickett & Welch, 1998; Romer & Haring, 1994). This will include teaching others to express in non-speech forms such as gestures or object representations (Correa-Torres, 2008).

Access, participation, and progress in the general curriculum can be enhanced through the proactive application of three Universal Design for Learning (UDL) principles, which are

1. multiple means of representation
2. multiple means of action and expression
3. multiple means of engagement (Hartmann, 2011; R. M. Jackson, 2005).

As a lesson or unit is being developed, educational team members should ensure that information will be presented in an accessible and comprehensible format, that the child who is deafblind has opportunities to demonstrate knowledge and skills, and that necessary adaptations and accommodations are provided to ensure engagement. Additional instructional time may be needed to provide hands-on experiences for tactual learners.

The heterogeneity among children who are deafblind, coupled with the heterogeneity among placements, makes it inappropriate to compare the effectiveness of one setting with another setting. Thus, the recommendations made here are at the emerging level of evidence. Research on effective instructional practices is needed.

Science

Penrod, Haley, and Matheson (2005) reported low test scores in science on the state content test in Kentucky among learners who were blind, deaf, and deafblind, suggesting that gaps in teacher knowledge may be part of this student achievement problem. They further suggested that general education teachers who possess content knowledge in science learn more about sensory disabilities and that teachers of students with sensory disabilities, including deafblindness, learn more about the content area of science. The active engagement of students who are deafblind can be enhanced by making science lessons as inquiry based as possible (Perkins School for the Blind, 2013; Ross & Robinson, 2000). The acquisition of science concepts can be improved through hands-on experiences in problem-solving situations. Given that science is typically taught in a visual format, the teacher with expertise in visual impairment and blindness or deafblindness is needed to suggest tactile adaptations and strategies (Penrod et al., 2005). While preparing to teach each science lesson, teachers must consider the students’ backgrounds and experiential knowledge, the vocabulary demands of the lesson, potential content modifications, the adaptations needed to maximize access to the instruction and materials, and ways to encourage active participation in the lesson (Engelbrecht & Fraser, 2010; Penrod et al., 2005; Ross & Robinson, 2000). Special attention must be given to non-visual means of presenting the science content and the unique communication needs of each student who is deafblind. With just one peer-reviewed article on science instruction, the field of deafblindness is in dire need of research in the area of science.

Social-Emotional/Behavioral

There is a moderate level of evidence on the impact of deafblindness on behavior as well as etiologically specific effects on behavior (Bernstein & Denno, 2000; Dammeyer, 2012; Graham, Rosner, Dykens, & Visootsak, 2000; Hartshorne, 2011; Hartshorne & Cypher, 2004; Hartshorne, Hefner, & Davenport, 2000; Hartshorne, Nicholas, Grialou, & Russ, 2007; Hartshorne & SalemHartshorne, 2011; J. K. Luiselli & Greenridge, 1982; Stratton & Hartshorne, 2011; van Dijk & deKort, 2005). Although there is an extensive body of research on the importance of identifying the intended purpose or function of a behavior prior to developing an intervention plan, evidence in the field of deafblindness is at the emerging level (Aitken, 2002; Durand & Kishi, 1987; Goetz, 1995; Goodall & Everson, 1995; Hartshorne et al., 2000; Horner & Day, 1991; Janssen et al., 2004; Majors, 2011; Mirenda, 1997; Prickett & Welch, 1998; Silberman et al., 2004; Stremel & Schutz, 1995). The process of identifying the purpose of behaviors is called functional behavioral assessment (FBA). It is important to consider the communicative value of unacceptable behaviors and that these behaviors may occur due to unmet needs (Prickett & Welch, 1998). FBA may be followed by functional communication training (FCT), which involves teaching socially acceptable ways of communicating as replacement behaviors to fulfill the same purposes as unacceptable behaviors.

There is also a moderate level of evidence for the efficacy of applying behavioral principles such as

• praise and attention
• token economies
• overcorrection
• differential reinforcement of other behaviors
• differential reinforcement of lower rates of behavior
• response blocking
• various reinforcement systems
• contingency awareness

to reduce or eliminate stereotypes, self-injurious behaviors, and aggression toward others (Barton & La Grow, 1983; Barton, Meston, & Barton, 1984; Horner & Day, 1991; J. K. Luiselli, 1992; J. K. Luiselli, Evans, & Boyce, 1986; J. K. Luiselli & Greenidge, 1982; J. K. Luiselli, Myles, Evans, & Boyce, 1985; Sisson, Hersen, & Van Hasselt, 1993; Sisson, Van Hasselt, & Hersen, 1993; Yarnall & Dodgion-Ensor, 1980). Changes in the curriculum and environment (including stimulation levels) and adult responses can also support positive change in behavior in children who are deafblind (Bernstein & Denno, 2000; Durand & Kishi, 1987; van Dijk & de Kort, 2005). Examples include modifying the curriculum to include experiences that are familiar to the child, providing sufficient physical space to reduce anxiety, and avoiding words that tend to upset the child.

There is a moderate level of evidence for both the impact of deafblindness on behavior and the application of behavioral principles in interventions. Additional research is needed on the application of Functional Behavioral Assessment (FBA) principles to behavioral assessment in children who are deafblind and proactive strategies that support positive behavior and socialization.

Transition

An interagency approach to personal-futures planning (PFP), a type of person-centered planning, is critical to (a) capturing the transition strengths and needs of each individual who is deafblind and (b) planning natural and paid supports for all aspects of adult living (Everson, 1995; Malloy, McGinnity, Kenlye, Vellia, & Voelker, 2009; B. Nelson, 2005; Rachal, 1995; Rachal, Steveley, Goehl, & Robertson, 2002-2003). PFP involves the creation of maps by a team of concerned individuals and the young adult who is deafblind. A PFP facilitator supports all team members to contribute. PFP maps may be about vocational options, residential options, community involvement, friendships, and other relevant topics for adulthood (Enos, 1995). One of the purposes of PFP is to engage in team problem solving to resolve physical and social barriers to participation across adult settings (Stremel & Schutz, 1995). Extensive documentation of the use of PFP has been made available to a national transition project led by the Helen Keller National Center in the 1990s (S. B. Marks & Feeley, 1995).

Children who are deafblind are more likely to gain employment after high school if provided with vocational experiences that are part of secondary education programming (Luft, Rumrill, Snyder, & Hennessey, 2001; McDonnall & O’Mally, 2012; Petroff, 2010). Employment opportunities should be based on the young adult’s preferences among occupations available in their local community. There is a dire need for additional research on all topics related to the transition needs and experiences of young adults who are deafblind.

Conclusion

Vision and hearing are the two distance senses that are most often used for learning. It is difficult to imagine how much hearing and sighted individuals learn through these senses without any special effort. In contrast, individuals who are deafblind gain limited to no benefit from observational learning. Much of what they learn must be directly taught. Appropriately prepared professionals are essential to addressing the complex programming needs of children who are deafblind (Parker et al., 2012). These professionals extend the invitation to learn and provide the specialized approaches and strategies that support the child’s achievement and well-being. Administrative support is critical to providing the types of educational environments that ensure active engagement.

(Ferrell, Bruce & Luckner, 2014, Deaf/Blind)

Hurst, K. (1995) Teaching Strategies and Content Modification for the Child Who is Deafblind,- from https://txdeafblindproject.org/wp-content/uploads/2021/04/TeachingStrategiesContentModificationsDB.pdf  

Teaching Strategies and Content Modification

The Child with Deaf-Blindness

The child with deaf-blindness requires considerable modifications to teaching content and different teaching strategies. He cannot learn from what he sees like the deaf child does. He can not learn from listening like the blind child does. He learns only by what he does. This means that no learning is taking place for him while waiting for others to take their turn. For this reason small group or individual instruction becomes more critical. Large group instruction is only valuable if he can be consistently active (e.g. playground activities).

This child also may have problems experiencing new things. Encountering the world without benefit of vision and hearing requires a great deal of trust. Bonding with the child is critical for the instructor, therefore it is important to evaluate the child’s response to an individual when determining who will be the primary provider of instruction. He may be withdrawn or passive, content to stay in one place and let the world come to him. Remember for him, he will learn only through doing.

Things often magically appear and disappear before him. Cause and effect are elusive. People do things to him, but not necessarily with him. There is little explanation of events before they occur. For this reason it is important to make interactions balanced (my turn, your turn) to encourage him to be responsive. Instruction that is always directive requires no response from him.

Safety is also of critical importance to this child. Not only must the environment be made safe for him, but he must feel safe in order to move around on his own. If he does not, he is likely to stay glued to one spot resisting interaction with his environment and the people in it. Instruction and support from an orientation and mobility specialist is very important. She may need to help staff evaluate the environment for hazards and develop travel routes for the child to use. She may work directly with him to orient him to that environment, and provide training on travel techniques and travel equipment.

The curriculum focus for the child with deaf-blindness will differ from that of the child with only a single sensory impairment. The deaf education focus may be primarily on using language to code existing concepts. The curriculum focus for a child with visual impairment may be more oriented toward building concepts and experiences which can provide a firm cognitive foundation for language. The curriculum focus for a child with deaf-blindness should be on bonding and developing interactions and routines for expanding the frequency and functions of communication. This child will not learn about objects or actions incidentally. He cannot tie together the fragmented input he receives without interpretation and instruction from others. He must be taught to use and accept this instruction.

Developing a communication foundation for learning is a priority. Typically communication is tactile in nature using signals, objects, gestures and later on sign language or tactile symbols or some combination of forms. Language is developed through the use of routines, calendar systems, discussion boxes, etc. Because of the degree of vision impairment and his inexperience with real events in the world, the use of print, pictures, and demonstration will be of little or no value to this child. He may not understand pretend or role-play as an event that relates to some real experience. The child with deaf-blindness may first need to be moved co-actively through an activity to know what is expected of him. After he understands what is expected, this support would be faded to avoid building prompt dependence.

Because concepts develop so slowly for this child, there should be a focus on making learning functional. Great care needs to be given to developing clear goals and objectives for this child. Typically, these objectives need to be limited in number since this child will need many opportunities to practice skills before he is able to generalize the concept to other situations.

This child would have a very limited knowledge of animals because he can not observe them or hear them. He has not seen television shows about animals. He may have a pet at home, but might only encounter it if the pet is placed in his lap or brought to him. His experience with that animal would be primarily tactile. He may not be able to distinguish his long-hair cat from his long-hair dog if he only pets the animal. Or he may experience the animal as a thing that licks or smells a certain way.For this reason vocabulary (concepts) which are taught should be more broad in nature. Careful consideration should be given to concepts that can be applied to other units throughout the year and across a variety of settings.

For example, a farm animal unit might focus on action concepts such as feed, pat, rub, pull, walk, open, close, pour. These same concepts should be applied to other units or in different environments. For example, “pull the leaf”, “pull the wagon”, “pull the drawer”, “pull off the lid” and so forth. This child may have a “pull” unit throughout the year that is embedded in the various units the other students will study. If this child has a pet at home, another approach to instruction could focus on things this child can learn to do with his pet. For example, he might learn to feed his pet, walk it, pet it, brush it, etc. Units could be developed around things that can be fed, walked, brushed, etc.

The child with deaf-blindness could meaningfully participate in a play center, but his goals would be different from the other children. For example, while the other children pretend to be animals, the child could “rub” or “pat” them as if he was the farmer they come to for attention. In Art he could “pat” and “pull” modeling clay to help a classmate form an animal shape. At recess, he could direct the other children to “pull” him in the wagon or practice pulling them with help from a classmate. The teacher for the hearing impaired or other staff could help him to learn to vocalize to get the other children’s attention before he signs “stop” or “go”. In Science he could use his vision to find objects in the sandbox. Then he could “open” and “close” the door to the toy barn, “pour” sand on the toy animals, “pull” the shovel out of the sand, etc.

When he visits a farm with the other children he would experience the differing size, textures and smells of the animals, but his goal might be to use his cane or sighted-guide technique in unfamiliar environments. If field trips are regular events, he might also learn a field trip routine. Unless he actually lives on a farm, learning about the animals and what they do will be of little value to him even though it may be a very pleasurable event.

Obviously this child will require a great deal of individual support. Initially this may need to be provided by the teaching staff. However, if good interaction and communication skills are modeled for the other students and an effort is made to draw them into successful play situations together, they may be able to provide instructional support for some activities.

Conclusion

The educational needs of a child with deaf-blindness are unique. Teachers without specific training in the area of deaf-blindness may be unable to appropriately program to meet these needs without specialized training and support. Few school districts have even one teacher with this kind of specialized knowledge. In addressing the child’s education from birth – 21 a large number of teachers and support staff as well as community members and human service staff must work with the child. However, if his unique learning style is not addressed, the child with deaf-blindness is at risk for being excluded from the classroom, the family and the community.

This article originally appeared in the January 1995 edition of P. S. NEWS!!! Published by the Texas School for the Blind & Visually Impaired, Deaf-Blind Project.

(Texas School for the Blind & Visually Impaired Deaf-Blind Project, 1995)

Wikipedia (n.d.) Deafblindness from https://en.wikipedia.org/wiki/Deafblindness

Updated 6.28.22