Family Members Enhance the Literacy and Communication of Teens with
Significant Disabilities
Planting the Seeds of Inclusion Conference - 2015
Denise Clark clarkd@uwosh.edu
Teri Wegner wegner@uwosh.edu
Ann Mickelson mickelsa@uwosh.edu
In Collaboration with
Stacey Skoning
Flo Muwana

• The Broader Mission and Literature
• Overview of this Literacy and Communication Study
• Procedures
• Participants
• Results
• Limitations
• Results and Implications
• Next Steps: Where do we go from here?

“…We are all acutely aware that the ability to read, spell, and write is the only cluster of skills that enables people with severe communication disorders to say what they want, when they want to…"
(Mirenda, 1993, p.7).

• Emergent literacy researchers define literacy learning as a life-long process, beginning at birth, and supported by natural explorations (Koppenhaver,
2000).
• Literacy includes reading, writing, speaking, and listening.

• Historically, many students have been excluded from literacy instruction (Katims, 2000; Kleiwer &
Biklen, 2001).
• Others receive limited instruction with limited foci
• (e.g., functional skills and/or “sight words”)
• Traditional views of and approaches to reading and writing have promoted low expectations for this population.
• Exclusion from initial instruction perpetuates exclusion.

• Young students with severe communication, motor, and cognitive disabilities benefit from emergent literacy intervention (Koppenhaver, 2000).
• Studies confirm benefits of parent-teen storybook reading interactions in fostering increased communication.

• The ability to benefit from emergent literacy activities
modeling of possible uses of print and communication symbols,
to supportive texts and technologies” (Koppenhaver, 2000, p.
273).

• The often preferred literacy instruction used by many special education teachers for individuals with severe disabilities focuses on life-skills training
, such as picture schedules or identifying simple words and phrases frequently occurring in the home and community (Ruppar, Dymond &
Gaffney, 2011) rather than literacy elements.

• Though improving the” functional” reading skills of students with severe communication disabilities is a necessity, other

• Research has shown increased gains in reading skills when instruction incorporated literacy elements
, such as visual and discussionbased interventions, wh-questions, and rereading texts in addition to oral presentation of texts using adapted, ageappropriate reading materials (Hudson & Browder, 2014;
Morgan & Moni, 2008; Shurr & Taber-Doughty, 2012).

• Westgate & Pesola (2008) reported the positive effects of using age-appropriate poetry and adapted materials combined with a variety of learning strategies on the reading decoding and reading comprehension of young adults with Down syndrome.

• When teens with significant disabilities including those with
Down syndrome received literacy instruction in inclusive environments that used general education curricular materials, they displayed higher reading skills than their peers who were solely taught in segregated classrooms
(Bochner, Outhred, & Pieterse, 2001).

• Began in the Fall of 2013- data presented here is part of a larger study.
• Examined the effects of home-based emergent literacy experiences on the communication of teens with severe communication and motor disabilities who ranged in age from
14-16.
• Three reading dyads (Family member and teen)

• Three phases:
• Baseline
• Intervention 1-Textual/Story Communication Focus
• Intervention 2-Literary Elements
• We wanted to know the effects of:
• Supportive literacy strategies
• Age-appropriate literature
• Visual strategies
• Guiding questions

• How often and in what way did teens communicate during reading?
• Rate - number of occurrences per minute
• Categories -
• manipulates the book, vocalizations, verbalizations, eyepoints, points/gestures, moves away, manual signs, AAC, and other book/object
• Examined the purposes for teens’ communication across study phases.
• Categories-
• responds to adult, comments on book, unrelated comments, directs reader, points/gestures unrelated to book, physical movement unrelated to adult commands, and nonspecific

Quantity and Quality Measures regarding the Family Member
• Categories of responses to teens’ communication:
• Adult responds to student communication attempts
• Adult asks a question related to the book
• Commands related to the book
• Commands unrelated to the book

• Length of time analysis
• General trends in change of behaviors for baseline and intervention 1 for two of the three participants

• Instructions for dyads:
• Read three times per week for 10 minutes for a duration of two weeks.
• Choose books that are typically read to/with the teen
• Video record each session.
• Begin each reading session by stating the time, date, and name of book.

• Materials
• Abridged books based on teens’ interests and ages
• Communication cards with questions used during and after the reading
• (who, what, where, which, and how)
• Instructions
• Use abridged books, communication cards, and questions
• Expand and relate to teen’s life
• Read three times per week for 10 minutes for a duration of two weeks
• Video record each session

• Male, Age 14, Grade 8
• Enjoys watching televised sports-hockey, soccer
• Diagnosed with autism
• Home-schooled ½ day, school ½ day
• Functional use of echolalic speech
• Reported to have a 75-100 word expressive vocabulary
• Reading Milestones Level 1
• Proloquo2go in IEP but did not see used
• No literacy goals in his IEP prior to 6 th grade.
• Mother agreed to be the reading partner

• Male, Age 15, Grade 8
• Enjoys soccer, baseball, videogames at K1 level, and food
• Carries large set of books around frequently
• Diagnosed with Down Syndrome and autism
• Reported to be nonverbal and to use vocalizations
• Communicates with sign language and AAC but neither used consistently at home
• IEP literacy goals: read short sentences, comprehension of basic questions, spelling words from books he is reading
• Mother agreed to be the reading partner

• Female, Age 16, Sophomore in self-contained high school classroom
• Enjoys television-commercials, Sponge Bob and Shrek, watches crime shows with sister, music, and food
• Significant communication, physical, and visual impairments
• Nonverbal: Uses eye gaze, vocalizations, and some hand movements
• No literacy goals in her IEP
• Assistive Technology needs included in IEP: keyboard, switches, voice output system, communication pictures/photographs
• A teen-aged sibling agreed to be the reader in this pair

• Length of Reading Engagement
• Behaviors during Baseline
• Behaviors during the Intervention

Length of Reading Engagement- P-1
12:00
9:36
7:12
4:48
2:24
0:00
24:00
21:36
19:12
16:48
14:24
1 2 3
Sessions
4 5 6
Baseline
Intervention

14:24
12:00
9:36
7:12
4:48
2:24
0:00
Average reading length
Baseline
Intervention
• Range Baseline:
• 5:56 – 14:07
• Range Intervention:
• 7:23 – 21:13

Length of Reading Engagement – P-2
48:00
42:00
36:00
30:00
24:00
18:00
12:00
6:00
0:00
1 2
Sessions
3
Baseline
Intervention 1

21:36
19:12
16:48
14:24
12:00
9:36
7:12
4:48
2:24
0:00
Average reading length
Baseline
Intervention
• Range baseline
• 4:45-10:11
• Range intervention
• 22:52-40:50

Length of Reading Engagement- P-3
14:24
9:36
4:48
0:00
4:48
0:00
19:12
1 2 3
Sessions
4 5 6
Baseline
Intervention

19:12
16:48
14:24
12:00
9:36
7:12
4:48
2:24
0:00
Average Reading
Length
Baseline
Intervention
• Range baseline
• 5:06-6:21
• Range intervention
• 13:00-23:48

GENERALIZED CODING TRENDS

Baseline
• Manipulated book, vocalized, verbalized, pointed/gestured
• Many unrelated comments and point/gestures to environment and not book
• Frequent repeated references to PE teacher, line therapists, hockey
• Directed reader to end session: turned page, closed book, threw book
Intervention
• Increase in book manipulation, pointing/gesturing, verbalizations
• Increase in responses to questions and directing reader
• Used his hooded sweatshirt to play role of a Jawa
• Increase self-initiated comments about story
• Considerably more language than 75-100 words
• Usually 1-3 word utterances, but some longer

Family Member
Baseline
• Commands for on-task behavior: many
• AAQ: many questions were asked consecutively
• Often answered questions before teen could respond
• Few times related story to teen’s life
Intervention
• “He won’t like these books."
• Questions presented one at a time more frequently
• Allowed more wait time for student to respond
• Was more animated in comments and verbal praise
• Related story to teen’s life more
• Paired physical actions with vocabulary
• Uttered phrases like “your not a fan on this book are you” with multiple presentations in sequence.

Baseline
• Enjoyed the reading sessions-laughed and imitated actions from the book
• Used AAC two times
• Used few signs
Intervention
• Increased use of sign language to comment on book
• Took ownership of one book
• Liked action books such as sports
• Answered and asked many questions during readings

Family Member
Baseline
• Basically read the story
• Few verbal interactions such as commenting on story or asking questions
Intervention
• Unsure of books
• Did not always understand that teen was signing to her
• Did not always understand what teen was verbalizing
• Increased animation
• Increased questions
• Increased comments about reading
• Increase in relating story elements to teen’s life

Teen
• Increased communication attempts using new material
• Increased engagement with material
• Responded to most questions during intervention correctly
• Acted out characters or verbs in stories
Family Member
• Increased animation during readings
• Increased questions and comments
• Increased time spent in reading activities
• For P-1, less time getting teen on-task

• Organize literacy cards and questions in a format that families are comfortable with
• Check recordings for sound and completion of phase before introducing next phase
• Be more aware of statements about inability to finish a phase-
• “I hope this is okay.” “I’m not sure if this turned out.”
• Provide more opportunities for family members to practice the interventions with us

• Recruit participants from schools
• Family members’ slight resistance to reading ageappropriate books
• Set up a designated space for readings-indicate space for camera set up (tape on floor) so that we can see both teen and family member
• Technology limitations

• Persistent lack of recognition of teens’ communication attempts
• Reader stamina
• Family members were overwhelmed with literacy questions and cards.
• Participant attrition
• Technology

 Study the effects of using
 age-appropriate reading material and
 supportive literacy activities on the communicative and literacy skills of young adults with severe communication disabilities

Does the adult readers’ use of literacy elements and strategies increase young adults’ with severe communication disabilities opportunity for active communicative engagement in reading?

 Does the use of age-appropriate texts increase the young adult with severe communication disabilities opportunity for active communicative engagement in reading?
 Does the use of age-appropriate reading material provide higher levels of satisfaction during reading activities for adult reading partners and young adult with severe communication disabilities?