Welcome from 4. Family experiences of the NDIS Mr Bobby Pate 5. - PDF document

6/11/2020 Acknowledgement of country Down Syndrome Research Program @UQ 2020 Research update Our partners The Academy particularly strives to: • Further the knowledge of disability professionals around the world. • Address the education and training needs of disability professionals and organizations in less affluent countries. • Assist disability professionals to apply research and scientific knowledge to their policies and services, and to the lives of individuals and families they support. • Foster capacity for research, generating knowledge, and developing research-based policy and practice. Research updates 1. Inclusive maths 2. Numeracy for adults 3. Literacy for adults Welcome from 4. Family experiences of the NDIS Mr Bobby Pate 5. Mental health and ageing 6. Sleep disturbances 7. Ethical, Legal, Social implications of genomics in the context of Representative of participants with Down syndrome disability 8. DSi Education guidelines 1

6/11/2020 It’s possible! Inclusive secondary mathematics Associate Professor Rhonda Faragher Monari Martinez, E., & Benedetti, N. (2011). Learning mathematics in mainstream secondary schools: experiences of students with Down’s syndrome. European Journal of Special Needs Education, 26(4), 531-540. R.Faragher@uq.edu.au R.Faragher@uq.edu.au Before and after Learning Year Level Adjusted Mathematics • The germ of an idea • The problem • Looking for solutions in classrooms R.Faragher@uq.edu.au R.Faragher@uq.edu.au 10 Looking for a solution … The student’s view? • … and running with it • A GRAPHICS calculator!!! R.Faragher@uq.edu.au R.Faragher@uq.edu.au 2

6/11/2020 Findings (so far)  Students can learn maths from the year level curriculum – and they love it !  Individual student characteristics affect learning outcomes but in surprising ways e.g. some are very studious .  Teachers expected that their students could be successful at year level mathematics . If there were barriers, they worked to find ways around through adjustments to learning materials or approaches to the topics.  Small suggestions were taken up by the teachers in creative and reflective ways, leading to new approaches in their classrooms or different responses from students.  Teachers’ planning is affected before the lesson and during as teachers think and problem solve and make decisions in the moment .  Creative, reflexive teachers respond to learner characteristics through changing, adjusting and developing the mathematics learning activities offered not just to the students with Down syndrome, but to all learners in the class .  As a way out of low attainment , this is a critical aspect of mathematics education and an imperative of mathematics education research to further explore its possibilities. R.Faragher@uq.edu.au 13 R.Faragher@uq.edu.au I didn’t think he could do it! Max’s support worker Numeracy for adults Dr Lorraine Gaunt L.Gaunt@uq.edu.au L.Gaunt@uq.edu.au Evid idence-based pro rogram of lit iteracy learn rning • Recent longitudinal evidence – 1998 to 2003 – two year program • Participants = 191 adults with intellectual disabilities • Used standardized assessments: receptive language, single word reading and reading comprehension – twice each year. • Using growth trajectory model - all participants showed statistically Literacy for adults significant evidence of increased progress across all 3 assessments. Dr Anne Jobling Conclusion – evidence-based program such as Latch-On has potential to enhance language and literacy development in young adults with intellectual disabilities a.jobling@uq.edu.au a.jobling@uq.edu.au 3

6/11/2020 Parent re responses from Irish Latch-On On Literacy necessary ry part rt of of life lon ong learning • It made an enormous difference... I was starting to believe that maybe he was as good as he was ever going to be and • Essential component in adult education sure I was doing too much for him. Now he is reading the paper, now not the whole paper, but he can pull out what • Adds to capacity for employment he needs and picking up the paper makes him feel good. • Enhances social interaction and inclusion • More questions from her and you know appropriate ones. No nonsense or attention seeking. She is more interested in the other lads at home and ourselves I think” • “He is out of the bed, quick as a cat on Latch-On mornings" a.jobling@uq.edu.au a.jobling@uq.edu.au An An Explorati tion of the NDIS Plannin ing Proce rocess from rom the Pers rspecti tives of Ad Adults lts wi with th Inte telle lectual Disabil ility ty an and their ir Fam amil ilies. Focus • NDIS plan creation • NDIS plan implementation • Outcomes for the adult Family experiences of the NDIS Four connected qualitative studies • Family questionnaire Jan Lloyd • Two semi structured interviews • Two case studies • A focus group with adults with intellectual disability j.lloyd@uq.edu.au j.lloyd@uq.edu.au Findings Implications for r adults and families • New opportunities Engagement of adults in planning process • Recognise the importance of their engagement in the planning • A time to re think what was happening in the adults’ lives • Need to find ways to include adults • Help them become more informed about the planning process • Challenges in both planning and implementation • What is their role? Building knowledge and skills • There were extra challenges for adults and their families living in rural • Build adult’s skills in choice making and remote areas • Build knowledge on what is available • Find advocacy groups • Views stakeholders held of disability affected planning process and Creating an ordinary life for adults with intellectual disability • outcomes of plans Remember all elements of an ordinary life • Friendships/independence/ making choices • Lack of inclusion of adults in the planning process • Not a one size fits all- service providers- need to be catering to individual needs • How to work with support workers to help adult build friendships • Added workload and stress for families j.lloyd@uq.edu.au j.lloyd@uq.edu.au 4

6/11/2020 Down Syndrome Lo Longit itudinal Study • 40 years in 2018 Longitudinal Down Syndrome Study • Original purpose – mother-baby interaction (Cohort 1) • Re-oriented purpose (1) – impact of early intervention (Cohort 2) Mental health and ageing • Re-oriented purpose (2) – longitudinal tracking (natural history) Professor Monica Cuskelly • Re-oriented purpose (3) – address issues relevant to families and individuals Monica.cuskelly@utas.edu.au Monica.cuskelly@utas.edu.au Research into me mental health lth of ad adult lts wi with th Down syndrome De Dementia • Rate of mental health disorder have typically reported that between 22 & 35% • Vulnerability to Alzheimer Disease – due to trisomy 21 (Määttä et al., 2011; Prasher, Glenn, Cunningham, & Glenholmes, 2012), • Depression is generally identified to be the most common diagnosis • Diagnosis rates increases after approx. 50 years of age (Dykens, 2007). • Mallardo , et al., 2014; 45% met ‘ caseness ’ criteria using the Mini – PAS ADD • Identified by loss of function, especially memory • 30% had a diagnosis – 50% of these with Depression • Process likely to begin substantially earlier than diagnosis Monica.cuskelly@utas.edu.au Monica.cuskelly@utas.edu.au Results re re mental health • 42% met threshold criteria • 1/3 Depression • 1/3 Psychosis • I/3 OCD • Mood was reported to be relatively positive Sleep disturbances • Results related to dementia • Only 1 individual met criteria for dementia on the ABDQ • 4 individuals were above the threshold for the IQCODE. Dr Jas Chawla • All four met screening criteria for at least one psychiatric diagnosis. Monica.cuskelly@utas.edu.au j.Chawla@uq.edu.au 5