Deafblind Pilot Project in Western Australia Sharon Barrey Grassick Overview of The Project The Deafblind Pilot Project was conducted throughout the 1999 school year in Western Australia, to acknowledge deafblindness as a unique disability and to address existing gaps in educational programs for students who are deafblind. The proposal for the pilot was submitted to the Education Department of WA (EDWA) collaboratively by WA Deafblind Association (WADBA), Vision Impairment Services (VIS), and WA Institute for Deaf Education (WAIDE). The Project was approved in principle by EDWA, thus acknowledging the need for greater support to students who are deafblind; however, the additional teacher staffing requested was not approved. Staffing for the Project, therefore, came from existing Visiting Teacher allocations within WAIDE and VIS and consisted of a part-time, 0.4 FTE Coordinator of Deafblind (Sharon Barrey Grassick), and a part-time, 0.4 FTE Visiting Teacher of Deafblind (Aynsley Kingstone). Deafblindness was to be regarded as a unique disability and therefore a separate department, but would be based within WA Institute for Deaf Education. Rationale of Deafblind Pilot Project To recognise the unique educational needs of students who are deafblind, by providing specialist support to schools and individual support to students, to enable equitable access to appropriate educational programs Previously, support provided to students who are deafblind ranged from nothing at all, to several visits per week, provided by Visiting Teachers of Deaf, or Visiting Teachers of Vision Impaired. It was highly unlikely that a student with deafblindness would have classroom teachers, visiting teachers and other teaching staff, including therapists, who had any training, skills or expertise specific to deafblindness. The primary aims of the Project were to address the need for staff development of skills specific to deafblindness, and to provide adequate staffing to support individual student needs. Eligibility Criteria The Coppersmith Matrix was used to assist in the process of determining eligibility criteria. (See attached matrix.) The criteria had been based on functional use of hearing and vision rather than degrees or levels of sensory loss. The following definition was used, from the Individuals with Disabilities Education Act (IDEA) from the United States: "...the term 'deaf-blind', with respect to children and youth, means having auditory and visual impairments, the combination of which creates such severe communication and other developmental and learning needs that they cannot be appropriately educated in special education programs solely for children and youth with hearing impairments, visual impairments, or severe disabilities, without supplementary assistance to address their educational needs due to these dual, concurrent disabilities." The majority of students identified as deafblind in WA are placed in Education Support Schools (12 out of the 14 students initially identified). Previously, placement in an Education Support School meant that these twelve students were ineligible for individual Education Assistant (EA) support, as the staffing formula within Education Support Schools was deemed adequate and did not consider deafblindness as a unique disability. Even if a student was fortunate enough to have input from a Visiting Teacher with some expertise in deafblindness, the lack of one-to-one student support severely limited the opportunities for individual programs to be implemented consistently. Each of the other two students initially identified - one in an Education Support Unit in a high school, and the other in a regular primary school in the country - were eligible for, and received, substantial individual EA support. Therefore the existing situation was inequitable, based upon school placement rather than upon individual needs. The first priority of the Pilot Project was to address this inequity. Target Population By the time the Project was approved, another four students had been identified, bringing the total number of students that met the above eligibility criteria to eighteen. A brief profile of these students, ranging in age from 12 months to 17 years old, follows: 3 students of preschool age, to receive home visits 2 students attending schools in rural areas to receive support as required, primarily through liaison with Visiting Teachers based in the country 1 student attending an Education Support Unit for Deaf, with significant staffing; liaison and support to be provided as necessary 1 student attending local High School with substantial individual support; specialist support to be provided as necessary 1 student rarely attended school for a variety of reasons; therefore making any consistent contact or programming extremely difficult 1 student medically frail, attending school sporadically; the need for specific educational support minimal, but to be regularly monitored 2 medically frail children at home; the need for specific educational support minimal, but to be regularly monitored 7 students attending Education Support Schools were targeted for concentrated intervention; 4 students attended the same school. Individual Student Support The first objective of the Project was to seek individual Education Assistant allocations based on individual needs to provide support to the seven targeted students who were placed in Education Support Schools. The additional allocations requested were achieved, but not until early March 1999. This delay resulted in most of the EA's going into new situations without sufficient specialised training regarding individual student needs. The limited resources of the Pilot Project were unable to provide the amount of training specific to individual students that was required initially. Therefore, training was provided 'on-the-job'. Ideally, training would have been provided to teachers and EA's prior to beginning work with each student, as well as being provided in the form of ongoing on-the-job support. This individual support to students has subsequently proven to be the crucial element in facilitating and developing communication, enabling access to appropriate, consistent educational programs and achieving positive student outcomes. Development of Individual Student Communication Programs Communication and language development were the primary educational aims of the Project. However, as these areas are so closely linked to all other developmental areas, assistance was provided in regard to other programs as required. Classroom teachers were supported in the development of individual student communication programs. Special emphasis was placed on the following: how to approach and make contact with a student the importance of consistency and predictable routines introduction of anticipation boxes (or tangible timetables) providing meaningful information - what messages are we giving students? providing opportunities to use any residual hearing or vision providing opportunities for choice making whenever possible taking the student's lead and building on his/her personalised communication system interpreting and responding to individual communication efforts providing clear beginnings and endings to activities using 'interrupted routine' to elicit communication use of greetings to encourage socialisation use of touch cues, object-symbols and body signs. Specific techniques and strategies were demonstrated, and ongoing support was provided to extend and enhance the communication skills of individual students and staff. Project Monitoring and Feedback Regular monitoring of the Project was conducted by the Coordinator, on both a formal and informal basis. A request had been made to school principals to provide relief time to enable classroom teachers to meet with the Coordinator on a regular basis to discuss student programs. This was achieved as required. Informal feedback from all involved was encouraged throughout the Project. Formal feedback included a questionnaire and invitation for comments, which was distributed to teaching staff and parents at the mid-way point and toward the end of the Project. Feedback was positive and constructive, indicating that although everyone was very pleased with the progress that all individual students had made, much more training and information needed to be provided early on, at the very beginning of the school year. Some of the strategies to be developed to address the needs as indicated through feedback and questionnaires, are as follows: Regular meetings with individual EA's as well as classroom teachers, therapists and parents, to share information and discuss concerns Confirmation by end of school year regarding staff for following year Training at end of year, which projects needs for following year Intensive training at beginning of school year, which addresses individual needs Continued on-going support, but more of it Interest group specific to deafblindness, inviting all those involved in the Pilot Project, and other interested parties Deafblind Interest Group As a response to the interest in the Deafblind Pilot Project, and to deafblindness issues in general, a Deafblind Interest Group was launched in November 1999. The inaugural meeting presented the video, The Emergence of Communication, which was produced by the European Communication Network, and brought back from the recent Deafblind International World Conference held in Portugal. This video demonstrates world best practice in interactive communication with students who are deafblind. This exciting initiative provides the opportunity for parents, carers, teachers, EA's, therapists, principals and anyone interested in deafblindness issues to come together to share experiences and information and to develop skills specific to deafblindness. Topics for discussion and presentation are decided by group participants. Training and Professional Development Each of the three Education Support Schools with identified students was provided with a professional development session the first week of school, Term 1, 1999, prior to the students arriving. These sessions involved the entire school teaching staff, including therapists, and covered the following: Consistent way to approach and communicate with a student who is deafblind Use of functional hearing and vision Communication using tangible objects, object-symbols, touch cues and body signs Importance of consistency, routine, structure and providing meaningful information Taking the child's lead, and interpreting communication efforts Challenging behaviours as communication Simulation of hearing and vision loss to provide an experience of sensory deprivation Training specific to individual student needs was provided at classroom level to teachers and individual EA's. On-going support was provided by the Coordinator and/or Visiting Teacher of Deafblind. Information was disseminated regarding any other relevant training that was available, and staff working with students who are deafblind were encouraged to attend. Student Assessment Ideally, a formal assessment tool, such as the Callier-Azusa Scales or the Carolina Curriculum, would have been used. However, both of these were too lengthy and time consuming to be considered due to the limited resources of the Project. Regular video analysis and documentation of individual student programs has been established as the most effective form of on-going assessment. Communication has been assessed using an adapted form of Seven Levels of Communicative Competence (Rowland & Stremmel-Campbell, 1987). Four of the six targeted students have progressed at least one level in the Communicative Competence assessments, with two students progressing two levels! Baseline data was obtained for each of the targeted students, using video documentation. Subsequently, a minimum of one video session per student per term was the goal. Documentation focused on the development of communication skills and included the following areas: socialisation and interaction language and concept development daily living skills use of residual vision and/or hearing interpreting behaviours as communication The evaluation process was based upon individual student outcomes, as indicated in student's IEP's (Individual Education Plans). Exemplary Classroom A class of five students, including three students with deafblindness and similar educational needs, has evolved as an exemplary classroom, implementing consistent and effective communication programs based on individual needs. The progress of all five children in this classroom has created much interest in the techniques and strategies employed, with many other staff members expressing a desire to be involved with the exemplary classroom students in 2000. Discussions with the principal indicate that the current staff will remain with the exemplary classroom in 2000 due to the gains made, and the need for continuity with these particular students. An innovative training scheme has been proposed which will allow regular staff exchanges within the school, to enable on-the-job sharing of the skills that have been developed in the exemplary classroom, with support from the Project. The scheme will be reviewed at the end of 2000, with the possibility of extending to other schools in 2001. Case Study A brief case study follows: One particular student came into the Project with a number of highly undesirable behaviours, including biting and scratching; he refused to wear hearing aids; his communication was limited to nonconventional presymbolic behaviours such as nonspeech sounds and pushing away; he spent the majority of his time in self-stimulatory activities such as twirling a leaf in front of his face; he did not initiate interaction; he would not sit in a chair; many staff did not want contact with him. With the introduction of consistent, meaningful communication, he has progressed three levels on the Seven Levels of Communicative Competence and is now communicating at an abstract symbolic level, using a combination of manual signs, single spoken words, and object-symbols. He will initiate communication by choosing object-symbols for a preferred activity, and he responds immediately with a smile to familiar people who approach and communicate with him in a consistent manner. His behaviour has improved beyond expectations, allowing for critical eye surgery to be performed on both eyes. Previously, his behaviour would have made the necessary post surgery care impossible. He is now wearing hearing aids all day, everyday. He will sit at a desk for up to 25 minutes and complete a variety of tasks. He is a happy, gentle child and staff genuinely enjoy working with him. There is no doubt that much of his progress is due to the consistency of methodology and communication that has been made possible through individual support to the student and specialised support to the school through the Project. The student is secure in the knowledge that he can now trust those around him to communicate with him in meaningful and nonthreatening ways. He is now eager to learn and he continues to inspire everyone with his progress. The school principal has commented, "His progress is nothing short of a miracle."1 Recommendations from the Project A final report detailing the success of the Deafblind Pilot Project was submitted to EDWA in November of 1999, including the following recommendations: Deafblindness to be recognised as a unique disability, separate to deafness or blindness, requiring specialist support and resources; to be included in the revised 'Policy and Guidelines for the Education of Students with Disabilities' The Deafblind Service to be a separate department of EDWA, but to be administered through an existing Visiting Teacher Service such as WAIDE or VIS, to eliminate the need for any additional administration costs to EDWA The definition of deafblindness, on page 2 of this report, to be endorsed (It is further recommended that the hyphen be dropped to be consistent with the rest of Australia and most of Europe2 in writing deafblind as one word, unhyphenated, to emphasise deafblindness as a unique disability, separate to deafness or blindness.) Students meeting the eligibility criteria of deafblindness to be eligible for individual Education Assistant support based on individual educational needs, regardless of school placement Training specific to individual student to be provided to classroom teachers and EA's prior to beginning work with a student who is deafblind Ongoing Deafblind specialist support available as required to students and schools to assist in the development, implementation and monitoring of appropriate individual educational programs School staff training to be provided as required regarding the unique educational implications of deafblindness upon student learning Staffing for the Deafblind Service to be provided according to (a suggested) Formula A budget to be provided for purchase of resources and materials Summary The Deafblind Pilot Project has been highly successful, as indicated by the following: Significant progress made by the students involved who received individual EA support A staffing allocation being committed specifically to a Deafblind Service, as of Term 1 of the 2000 school year Each of the 7 targeted students have had their individual EA allocations rolled over into 2000. Four more students, in various educational settings, have been brought to the attention of the Deafblind Project, and could require significant support in the near future; to be regularly monitored. Sharon Barrey Grassick Coordinator Deafblind Project - WAIDE References and Recommended Reading Bloom, Y. (1990). Object-Symbols: A Communication Option . Sydney: North Rocks Press. Bloomberg, K. and Johnson, H. (1991). Communication without Speech: A Guide for Parents and Teachers. The Australian Council for Educational Research. Chen, D. (1995). Understanding and developing communication. In D. Chen & Dote-Kwan (Eds). Starting points. Instructional practices for young children whose multiple disabilities include visual impairment (pp. 57 - 72). Los Angeles: Blind Childrens Center. Chen, D. & Dote-Kwan, J. (1995). Putting it all together. In D. Chen & Dote-Kwan (Eds). Starting points. Instructional practices for young children whose multiple disabilities include visual impairment (pp. 57 - 72). Los Angeles: Blind Childrens Center. Grassick, S.B., (1995). Communication for Students Who are Deafblind: A Practical Approach: Paper presented at the National Deafblind Conference in Sydney. Huebner, K.M., Prickett, J.G., Welch, T.R. and Joffee, E. (Ed.) (1995). Hand in Hand: Essentials of Communication and Orientation and Mobility for your Students Who Are Deaf-Blind. Volumes 1 and 2. New York: AFB Press, American Foundation for the Blind. Johnson-Martin, N., Jens, K., Attermeier, S. & Hacker, B. (1991). Carolina Curriculum for Preschoolers with Special Needs (2nd ed.). Baltimore: Paul H. Brooks. McInnes, J. M. and Treffrey, J.A. (1982). Deaf-Blind Infants and Children: A Developmental Guide: The Open University Press. Miles, B. & Riggio, M. (Ed.) (1999). Remarkable Conversations. A guide to developing meaningful communication with children and young adults who are deafblind. Massachusetts: Perkins School for the Blind. Nafstad, A. & Rodbroe, I. (1999). Co-creating Communication. Denmark: Nord Press, The Nordic Staff Training Center for Deafblind Services (NUD). Rowland, C., & Stremmel-Campbell, K. (1987). Share and share alike: Conversational gestures through emergent language. In D. Duess, L. Goetz, and K. Stremmel-Campbell. (Eds.), Innovative program design for individuals with dual sensory impairments (pp. 49-75). Baltimore: Paul H. Brookes. Stillman, R. & Battle, C. (1985). Callier-Azusa Scale H. (1985). Scales for the Assessment of Communicative Abilities. Dallas, University of Texas. Wolf-Schein, E. (1997). ADLO: Assessment of Developmental Levels by Observation (Edition for Clients with Hearing and Vision Impairments). Florida: Three Bridge Publishers. Deafblindness CAN be totally isolating, but with appropriate support and understanding, students who are deafblind CAN achieve