1. Welcome! Seminar Series: International comparisons about mortality data in people with intellectual disabilities

2. Seminar 1 Welcome! Introduction to seminar series. What do we know now about mortality of people with intellectual disabilities (ID). Future seminar topics and dates.

3. Welcome! We are Pauline Heslop and Matt Hoghton (England) and Emily Lauer (USA) who have been involved in reviewing deaths of people with ID in our respective countries. We would love to know who you are and where you are from. Could you fill in the quiz to let us know please? Thank you!

4. Contributing to the webinar Who has attended a webinar before? Can you let us know please by filling in the quiz? To ask a question, please use the chat box in the bottom right hand corner of the screen.

5. The aim of the seminar series To bring together academics, policy makers and practitioners from different countries. To share experiences of measuring, comparing and using mortality data for people with ID. To advance research into mortality of people with ID, sufficient to allow us to make inferences at national and international levels. To support the development of practical initiatives/strategies to address common concerns identified by the data.

6. Key objectives Agree a set of definitions and benchmarks to support collection of internationally comparable data. Share experiences about collecting mortality data, including practical and ethical issues faced. Provide a community of support for academics, practitioners and policy-makers. Support academics writing funding applications to undertake work about mortality of people with ID. Provide initial international comparisons about premature mortality in people with ID, sufficient for the development of practical strategies to address this.

7. Plan for seminar series Year 1: Three webinars: November 2014; March 2015; July 2015. Year 2:Two webinars: November 2015; March 2016. Meeting in Australia to coincide with IASSID World Congress August 2016. Year 3: Two webinars: November 2016; March 2017. Meeting in UK, USA or Europe July 2017.

8. Where are we now? What do we know now about mortality of people with intellectual disabilities?

9. Definition of ID ID is understood to refer to a state of: significant limitations of cognitive (reasoning, learning, problem solving) and adaptive (conceptually, socially and practically) functioning which affect areas of major life activity and the capacity to live independently as an adult which originated before the person reached adulthood (18 - 22 years of age) and which are likely to be life-long in nature.

10. Mortality of people with ID What do we know about age and cause of death of people with ID in the USA? Emily Lauer will tell us.

11. Mortality of people with ID What do we know about age and cause of death of people with ID in Canada? Hélène will tell us.

12. Mortality of people with ID What do we know about age and cause of death of people with ID in Australia? Tony will tell us.

14. NSW Australia (June 2005 to December 2011) Crude Death Rate (CDR) per 100,000 by Age Group Intellectual Disability (ID) compared to Rest of NSW Population The Intellectual Disability Group is all persons (n = 42,219) of all ages, who received a service from NSW ADHC Disability Services (a State Government Agency) between June 1 2005 and Dec 2011 and had a formal diagnosis of Intellectual Disability (ID). This group accounts for 0.5% of the NSW population. The prevalence of ID in NSW is estimated to be 1.8% The observation period for deaths was June 1 2005 till Dec 31 2011. There were 953 deaths. NSW population Deaths and population counts data were obtained from the Australian Bureau of Statistics (ABS). To create a comparison group, ID deaths and ID person years were subtracted from raw NSW counts.

16. NSW Australia (June 2005 to December 2011) Crude Death Rate (CDR) per 100,000 by Age Group & Sex Intellectual Disability (ID) compared to Rest of NSW Population

17. Mortality of people with ID What do we know about age and cause of death of people with ID in Germany? Friedrich will tell us.

18. 18 Westphalia-Lippe (13.500 persons per year, residential institutions or group homes, for the years 2007 to 2010) Men(56 %)45 years Women(44 %)46 years Characteristics of the two samples from Germany Number, sex and mean age (Dieckmann & Metzler 2012) Baden-Württemberg (11.000 persons per year, various living arrangements, for the years 2007 to 2010) Men(57 %)43 years Women(43 %)45 years age range: 18 to 95 years

20. 20 Westphalia-Lippe (residential institutions, group homes) Men70,9 years Women72,8 years Average life expectancy (based on the age-specific mortality rates) Baden-Wuerttemberg (various living arrangements) Men65,3 years Women69,9 years General population in Germany Men 77,3 years Women 82,5 years

21. Mortality of people with ID What do we know about age and cause of death of people with ID in Scandinavia? Eva will tell us.

22. Studies in Sweden Central Sweden – study of people with mostly severe ID (n = 1478) born between 1959 and 1974. Cohort was followed up in 1975 and 2003. 27% had died compared to 2% in the general population (Gustavson et al. 2005). Northern Sweden - all individuals known in the region in 1985 (n = 1400) were followed for seven years. There was a 60% increased mortality in the group with ID (Forsgren 1996). All individuals in Sweden with Down syndrome who died between 1969 and 2003. Median age at death was almost 60 years. Age at death had increased 1.8 years per year during this period (Englund 2013).

23. Mortality of people with ID What do we know about age and cause of death of people with ID in England? Matt will tell us.

24. Confidential Inquiry data Confidential Inquiry into premature deaths of people with learning (intellectual) disabilities Reviewed in depth: All known deaths of people with learning disabilities In a discrete geographical area of England with a general population of 1.7m Deaths occurred between 1st June 2010 – 31st May 2012. Total number of deaths: 233 adults with learning disabilities 14 children with learning disabilities. The death rate was 16.2 per 1000 of the population who have learning disabilities, nearly twice the rate of 8.8 deaths per 1000 of the general population.

25. Age at death Median age at death for males was 65 years Men with learning disabilities died on average 13 years earlier than men in the general population of England. Median age at death for women was 63 years Women with learning disabilities died on average 20 years earlier than women in the general population of England.

26. Age distribution at death

27. What are you thinking now? Fill in the quiz to let us know! Please type any comments you have to tell us what you think about the seminar format or content.

28. Next seminar March 2015 Dr Nick Lennox, Director of the Queensland Centre for Intellectual and Developmental Disability, Australia Developing international benchmarks for comparable data.

29. Thank you for joining us! Contact details: Pauline.Heslop@bristol.ac.uk Twitter hashtag #ID_mort Website to follow! We would like to thank the Economic and Social Research Council (ESRC) UK for their support in funding this seminar series.