Transcript Fetal Alcohol Syndrom - California State University

Yeunjoo Lee, Ph.D.
California State University, Bakersfield
The 25th Annual International Technology & Persons with Disabilities
Conference
San Diego, CA
Voice Output Communication Aids
 For students with speech impairments.
 Low to high tech.
 What is AAC?
What do we know?
 Literature reports a high level of stress from families of
children with AACs.
 There is a critical need for a highly qualified personnel
who can assess the needs of children and the family.
 Families are SYSTEMS of interconnected and
interdependent individuals.
 To understand the individual, we must understand the
family system of that individual. People cannot be
understood in isolation from one another.
Family centered practices
 Core to family-centered services is sensitivity and
respect for the culture and values of individual family
members and each family's ecology, as members
define the people, activities and beliefs important to
them (NECTAC, 2010).
 Families should be equal partners in the relationship
with service providers.
 All people have different but equally important skills,
abilities and knowledge.
Research Questions
 This research examined
 Parents’ perception on decision making process.
 Their knowledge of AAC.
 Their perceived effectiveness of AAC.
 Their perceived impact of an AAC on their family
dynamics.
 Their experience of having a child with an AAC.
Participants
 20 mothers
 2 from local area
 18 from a listserv ([email protected])
 Augmentative Communication Online Users Group
 Mean of participants’ age: 44.8 yrs
 Mean of children’s age: 12.95 yrs (6-20 yrs)
 Years of their child’s AAC use: 7.8 yrs (1-15 yrs)
Participants
 Children’s disabilities
 Orthopedic impairment: 13 (65%)
 Cerebral Palsy: 9 (45%)
 Mild/Moderate MR: 6 (30%)
 Moderate/Severe MR: 2 (10%)
 Autism: 2 (10%)
Research methods
 Mixed methodology (survey + phone interview).
 Survey instrument (N=20)
 2 multiple-choice, 9 open-ended items, and 16 likertscale items
 demographic information
 families’ perception of VOCA
 families’ acceptance of VOCA
 the effectiveness of VOCA
 its impact on family dynamics.
Research methods
 Phone Interview (N=11)
 Audiotaped and transcribed in verbatim.
 Tell me a little bit about your child?
 How do you feel about using the AAC device now?
 If a parent asks you about an AAC device for their child, what
would you suggest?
 How did the AAC change your family’s life?
 How did the AAC change your child’s and your life?
 What are some barriers to effectively using your child’s AAC
device?
 What are some things that you would like to change in your
child’s AAC device?
I feel comfortable sharing my ideas with the
evaluation team of my child's AAC.
Number of Participants
16
15
14
12
10
8
6
3
4
1
2
1
0
0
0
Strongly
Agree
2
3
4
5
Strongly
Disagree
Team members often asked my opinions
during AAC evaluation.
12
# of Participants
12
10
8
6
4
4
2
1
2
1
0
0
Strongly
Agree
2
3
4
5
Strongly
Disagree
I received training on how to use the AAC
device.
8
8
# of participants
7
6
5
4
4
3
3
2
2
2
1
1
0
Strongly
agree
2
Somewhat
agree
4
5
Strongly
disagree
I have adequate knowledge on how to
maintain the AAC device.
18
17
# of participants
16
14
12
10
8
6
2
4
0
2
1
0
0
0
Strongly
Agree
2
3
4
5
Strongly
Disagree
My child uses his/her AAC device as much
as I expect him/her to.
7
7
# of participants
6
5
5
4
4
3
3
2
1
1
0
0
Strongly
agree
2
Somewhat
agree
4
5
Strongly
disagree
Family members assume additional
responsibilities due to the AAC device.
6
6
5
5
# of participants
5
4
3
2
2
2
1
0
0
Strongly
agree
2
Somewhat
agree
4
5
Strongly
disagree
The AAC device adds to the financial
stress.
7
7
6
# of participants
6
5
5
4
3
2
1
1
1
0
0
Strongly
agree
2
Somewhat
agree
4
5
Strongly
disagree
The AAC device generates unexpected
stress.
7
7
6
# of participants
6
5
5
4
3
2
1
1
1
0
0
Strongly
agree
2
Somewhat
agree
4
5
Strongly
disagree
My input has been valued and taken into
consideration for the selection of AAC device.
14
13
12
10
8
5
6
4
2
2
0
0
0
0
Strongly
agree
2
Somewhat
agree
4
5
Stongly
disagree
My child uses his/her AAC device at home.
14
14
12
10
8
6
3
4
1
2
1
0
1
0
Stongly
agree
2
Somewhat
agree
4
5
Strongly
disagree
“The best thing she ever had”
 Mary (43 years old mom, 18 years old daughter, 13
years of AAC use)
The greatest thing is that it gives her opportunities and
different roles she can play because, like I said, she can
babysit for her sister, she can call someone and sing
happy birthday to them, for her it is very much the
social aspect much more than communicating the
basic needs…
“The best thing she ever had”
 Jenny (53 years old mom, 19 years old son, 15 years of
AAC use)
It opened up the ability that he can use the computer
environmental control so he has more power…the AAC
device given him power that he just couldn’t have like
he can turn on lights, he can turn on radios.
Stresses, challenges, barriers
 Financial burdens
 4/11 parents purchased a device at some point.
 “we went ahead and purchased it for ourselves. We didn’t wait for
the school system, they were taking forever."
 Additional responsibilities comes with devices.
 Time to program and setting up the device.
 Lack of training to program and maintain the devices.
 Integration of AAC into a daily life.
How to integrate
into daily life.
The stress of programming it…I think there is a lot of
stress associated with it though it’s very unclear as to
how to really organize the communication aspect of it.
I mean technical aspect of it is simple, you know you
can learn to program it…but to really learn how to
really communicate and to sort of umm motivate a
child to learn to use it effectively and to school system
to provide effective support for the teachers.
(H.J. 54 years old mom, 10 years old with visual and
orthopedic impairments)
Family perspectives on AAC
 (Angelo et al., 1996).
 97 Parents of children (13-21yrs) with severe speaking
and writing disabilities.
most
needs
Mothers’
Priority
needs
1. Social opportunities with
nondisabled peers (54%).
2. Integrating AT in the community
(49%).
3. Social opportunities with other
children with AAC (47%).
4. Increasing knowledge of AAC
(46%).
5. Planning for future communication
needs (45%)
Fathers’ most needs
1. Planning for future communication
needs (50%).
2. How to maintain and repair an AT
(49%).
3. Increasing knowledge of AAC
(45%).
4. Integrating AT at home(45%).
5. Integrating AT in educational
settings (44%).
6. Getting computer access (43%)
Professional and public attitudes
 I think the biggest thing is community at large, and
that would also include, basically anyone who works
with your child who doesn’t believe in the device.
(Anita, 49 years old, 11 years old son, 8 and half years of
AAC use)
 I think people are afraid of it…when he starts talking
they don’t know how to respond and a lot of people
don’t know how to respond…I guess its attitude, um,
that’s the barrier. (Jenny)
Professional and public attitudes
 We really had a hard time with, we didn’t have as hard time
with getting the technology as we did getting the supports
and services and we really didn’t get a speech therapist that
was qualified to work with him until he was like in the 9th
grade because they don’t have an AAC background. (Joan,
44 years old, 15 years old son, 10 years of AAC use)
 My daughter had a school speech therapist for 5 years who
refused to use the communication device, and I think
bottom line was she just was intimidated by it. (Anita)
Their role as a parent and educator
 Show devices and giving them examples of how to
integrate both low tech and high teach (Mary).
 We had a wonderful speech pathologist in the fact that
she cares so much for Sarah and wants her to use the
device effectively but doesn’t really understand, wants
to understand or get involved in the programming of
it. She just sends me notes on what she wants done,
which I really don’t have a problem… (Linda, 47 years
old, 20 years old daughter, 10+ years of AAC use).
Parents as advocates and educators
 Parents take an active role in purchasing, managing,
and supporting professionals.
 Implications of communication technology (emails,
websites…)
Others
 “It really hasn’t (changed family life). I have no idea
about that device. I can turn it on, turn it off, and
charge it.” (7 years of AAC)
 “Wherever we go, we have to make sure to have
electricity.”
 7/11 parents initiated to obtain an AAC.
 “I am the one who had to bring it to them”
 Suggestions
 Young role models.
 Better recycling program.
 Glare, battery life, attractiveness, better mounting system.
What do we do now?
 Provide continuous conversation with parents.
 Address parents’ stresses promptly and effectively (Parette
& Angelo, 1996).
 Provide continued support and training in programming
and integrating technology in a daily life.
 Provide a model of using an AAC device.
 Youtube vide0
 Pay attention to family dynamics and cultural differences
(Angelo et al., 1996) and communication partner’s
preferences and interaction styles (Nunes, & Hanline,
2007).
What do we do now?
 Connect parents through social/support groups.
 Home setting as the best environment for practice (Nunes
& Hanline; Seligman-Wine, 2007).
 Parents as experts.
 Be aware transition related needs.
 Upgrading devices
 Reevaluation
 retraining
 Develop/Provide resources to parents
 DVDs/CDs/online resources.
Professionals’ attitudes and
knowledge
 Special Education Teachers’ AT training (Lee & Vega, 2005).
 48.7% no or less than 5 hours
 22% more than 40 hours.
 Lack of Knowledge as a biggest barrier.
 Speech-language pathologists’ knowledge and skills
 Lack of knowledge of AAC as a primary barrier to successful service
delivery (Ratcliff, 2003).
 72% said their own competence with AAC systems are
low or poor. (Marvin et al., 2003).
 SLP training programs (Ratcliff, 2008)
 13% said none of their students are prepared to work
with people with AAC needs.
 33% said that 1-25% of students are prepared to work.
 About 50% said that AAC is a required course.
Online
Professional
Development
Inservice
Workshops
Teacher
Training
Programs
 Infuse technology related instruction in teacher training programs.
 Provide in-service workshops from local school districts.
 Utilize internet for training
 Online courses
 Webminars
 Email listservs
 Provide incentives.
 Provide planning time.
 Develop a central location for resources for teachers.
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alternative communication: Families of adolescents and young adults. Augmentative and
Alternative Communication, 12, 13-22.
Lee, Y. & Vega, L. (2005). Perceived knowledge, attitudes, and challenges of assistive
technology use in special education. Journal of Special Education Technology, 20 (2), 6063.
Marvin, L., Montano, J., Fusco, L., & Gould, E. (2003). Speech-language pathologists’
perceptions of their training and experience in using augmentative and alternative
communication. Contemporary Issues in Communication Sciences and Disorders, 30, 7683.
Nunes, D., & Hanline, M. (2007). Enhancing the alternative and augmentative
communication use of a child with Autism through a Parent-implemented naturalistic
intervention. International Journal of Disability, Development and Education, 54, 177-197.
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families: Trends and future directions. The Journal of Special Education, 30, 77-98.
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17-19.