Fetal Alcohol Syndrom

Parents Perspectives of Augmentative and Alternative CommunicationYeunjoo Lee, Ph.D.

California State University, BakersfieldThe 25th Annual International Technology & Persons with Disabilities ConferenceSan Diego, CA

Voice Output Communication AidsFor 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 practicesCore 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 QuestionsThis research examinedParents 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. Participants20 mothers 2 from local area18 from a listserv (ACOLUG@LISTSERV.TEMPLE.EDU)Augmentative Communication Online Users GroupMean of participants age: 44.8 yrsMean of childrens age: 12.95 yrs (6-20 yrs)Years of their childs AAC use: 7.8 yrs (1-15 yrs)

ParticipantsChildrens disabilitiesOrthopedic impairment: 13 (65%)Cerebral Palsy: 9 (45%)Mild/Moderate MR: 6 (30%)Moderate/Severe MR: 2 (10%) Autism: 2 (10%)Research methodsMixed methodology (survey + phone interview). Survey instrument (N=20)2 multiple-choice, 9 open-ended items, and 16 likert-scale itemsdemographic information families perception of VOCAfamilies acceptance of VOCAthe effectiveness of VOCAits impact on family dynamics.

Research methodsPhone 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 familys life? How did the AAC change your childs and your life? What are some barriers to effectively using your childs AAC device? What are some things that you would like to change in your childs AAC device?

I feel comfortable sharing my ideas with the evaluation team of my child's AAC. Team members often asked my opinions during AAC evaluation.I received training on how to use the AAC device.I have adequate knowledge on how to maintain the AAC device. My child uses his/her AAC device as much as I expect him/her to. Family members assume additional responsibilities due to the AAC device. The AAC device adds to the financial stress. The AAC device generates unexpected stress. My input has been valued and taken into consideration for the selection of AAC device.My child uses his/her AAC device at home. The best thing she ever hadMary (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

#10. going to a junior prom. 20The best thing she ever hadJenny (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 powerthe AAC device given him power that he just couldnt have like he can turn on lights, he can turn on radios.

Stresses, challenges, barriersFinancial burdens4/11 parents purchased a device at some point. we went ahead and purchased it for ourselves. We didnt 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 itI think there is a lot of stress associated with it though its 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 itbut 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. Priority needsMothers most needsFathers most needsSocial opportunities with nondisabled peers (54%).Integrating AT in the community (49%). Social opportunities with other children with AAC (47%).Increasing knowledge of AAC (46%).Planning for future communication needs (45%) Planning for future communication needs (50%).How to maintain and repair an AT (49%).Increasing knowledge of AAC (45%).Integrating AT at home(45%).Integrating AT in educational settings (44%).Getting computer access (43%)24Professional and public attitudesI think the biggest thing is community at large, and that would also include, basically anyone who works with your child who doesnt 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 itwhen he starts talking they dont know how to respond and a lot of people dont know how to respondI guess its attitude, um, thats the barrier. (Jenny)

#5. School refused to accept a device because of liability issue. 25Professional and public attitudesWe really had a hard time with, we didnt have as hard time with getting the technology as we did getting the supports and services and we really didnt get a speech therapist that was qualified to work with him until he was like in the 9th grade because they dont 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 educatorShow 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 doesnt 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 dont have a problem (Linda, 47 years old, 20 years old daughter, 10+ years of AAC use). #7. Publish a non-profit newsletter. #3 gives workshops.__ keep devices at home and invite parents to try and review them. #12 created a listserv for AAC users. 27Parents as advocates and educatorsParents take an active role in purchasing, managing, and supporting professionals. Implications of communication technology (emails, websites)OthersIt really hasnt (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 themSuggestionsYoung 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 vide0Pay attention to family dynamics and cultural differences (Angelo et al., 1996) and communication partners preferences and interaction styles (Nunes, & Hanline, 2007).

Home is a natural environment. one way to promote family engagement in early AAC intervention programmes is to teach parents to become language intervention agents in the childs natural environments. (Nunes & Hanline, 2007).30What 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 devicesReevaluationretrainingDevelop/Provide resources to parentsDVDs/CDs/online resources.

* Support groups through emails, monthly meetings. 31Professionals attitudes and knowledgeSpecial Education Teachers AT training (Lee & Vega, 2005).48.7% no or less than 5 hours22% more than 40 hours.Lack of Knowledge as a biggest barrier. Speech-language pathologists knowledge and skillsLack 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.

Classroom staff does not recognize the communication attempts of children with disabilities who have difficulties communicating verbally. The communication of school staff with these children is directive and controlling rather than interactive. 32IncentivesPlanning TimeInfuse technology related instruction in teacher training programs.Provide in-service workshops from local school districts. Utilize internet for trainingOnline coursesWebminarsEmail listservsProvide incentives. Provide planning time. Develop a central location for resources for teachers.

Angelo, D., Kokoska, S., & Jones, S. (1996). Family perspective on augmentative and 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), 60-63.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, 76-83. 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.Parette, H., & Angelo, D. (1996). Augmentative and alternative communication impact on families: Trends and future directions. The Journal of Special Education, 30, 77-98. Ratcliff, A., Koul, R., & Lloyd, L. (2008). Preparation in augmentative and alternative communication: An update for speech-language pathology training. American Journal of Speech-Language Pathology, 17, 48-59. Ratcliff, A. (2003). [Results summary of the MSHA AAC survey]. Unpublished raw data. Seligman-Wine, J. (2007). Supporting families of children who use AAC. The Asha Leader, 17-19. 35