Strategies for Implementing National Strategies for Aiding People with Intellectual Disabilities Affected by Dementia

Presenter(s) and Affiliations
Matthew P. Janicki, Ph.D. University of Illinois at Chicago, USA
Seth Keller, M.D. American Academy on Developmental Medicine and Dentistry, USA
Ronald Lucchino, Ph.D. Southwest Florida Area Agency on Aging, USA
Karen Watchman, Ph.D. University of West Scotland, Scotland

Abstract
Dementia may affect anyone, including any person with intellectual disability. There is a particularly strong link, however, between dementia and Down syndrome, where early onset may be prevalent.  How nations address the emerging public health challenge of dementia varies, but usually neglects the active inclusion of people with intellectual disabilities.  This workshop focuses on strategies and tactics that can be undertaken to develop a national plan on dementia and intellectual disabilities or introduce issues related to intellectual disabilities within existing general national dementia plans. The presenters will share the public policy strategies and tactics that have been used in two nations to integrate dementia issues relevant to people with intellectual disabilities (and their families) within national dementia strategies – stemming from the call in the WHO’s report, “Dementia: A Public Health Priority”.  The first will cover the strategies employed in Scotland, including active planning, consumer education, and the promotion of a national training program.  The other will detail the lessons learned from a national effort in the United States to affect the national planning process and updates of the U.S. National Plan to Address Alzheimer’s Disease. This effort, led by the National Task Group on Intellectual Disabilities and Dementia Practices, resulted in a national plan on Alzheimer’s and intellectual disabilities, a national screening instrument, various practice guidelines, program standards, a national training curriculum, and various educational materials. These collective experiences will be used to help participants frame a strategy in their own country, on a local or national level, to advocate for the inclusion of people with intellectual disability affected by Alzheimer’s disease and related dementias.

Time
09.00 am - 12.00 am
Half day workshop

Target Audience

• Medical/health/allied health professionals
• Policy makers and government officials
• Direct care/support staff
• Family members and advocates
• Managers, administrators, supervisors
• Research personnel
• Graduate and post graduate students

Transition to Retirement: A Guide to Inclusive Practice

Presenter(s) and Affiliations
Roger Stancliffe, PhD, Professor of Intellectual Disability at the University of Sydney’s Centre for Disability Research and Policy, Sydney, Australia.
Nathan Wilson, PhD, Researcher, lecturer, and Project Officer for the Centre for Disability Research and Policy, University of Sydney, Sydney, Australia.
Christine Bigby, PhD, Research Program Leader, and Deputy Chair Academic Board, Faculty of Health Sciences, School of Allied Health, Department of Social Work and Social Policy, La Trobe University, Melbourne, Australia.

Abstract
This workshop offers a practical set of methods to help people with intellectual disabilities successfully transition to retirement. Through real-life case examples, workshop participants will learn specific strategies for planning meetings, connecting community resources to the person’s interests, and developing effective support groups and mentors. Lessons from published research provide the basis for understanding the factors that enable and constrain full retirement opportunities for people with intellectual disabilities. All workshop participants will receive a copy of the Transition to Retirement manual and its accompanying DVD.

Time
09.00 am - 12.00 am
Half day workshop

Target Audience

• Front line personnel
• Disability service managers
• Policy makers
• Self-advocates
• Families

The Other 23 Hours: Enabling Environments in Intellectual Disability

Presenter(s) and Affiliations
Jennifer Clegg, Ph.D., Associate Professor, University of Nottingham, UK & Consultant Clinical Psychologist, Nottinghamshire healthcare NHS Trust, UK.

Abstract
Therapy from a specialist is typically kept to no more than an hour a day, and sometimes less, for people with intellectual disabilities. This workshop asks how we can ensure that the other 23 hours of every day also contribute productively to well-being. No matter who is in the environment the other 23 hours – care staff, family members, or others -- it is essential that they know how to provide an environment that enables well-being. Participants in this workshop, The Other 23 Hours, learn 3 interesting and practical ways to develop an Enabling Environment: promote psychological-mindedness, articulate a language of care, and introduce the Systemic Handover.

Time
09.00 am - 12.00 am
Half day workshop

Target Audience

• Nurses & social care staff providing services for people with mental health problems and challenging behavior
• Psychologists, psychiatrists & other qualified professionals supporting front-line staff who provide such services
• Commissioners & managers of organizations that provide such services

Ageing and Intellectual Disability: Developing web based training programme for frontline staff working with older people with intellectual disabilities

Presenter(s) and Affiliations
Raghu Raghavan and Steve McKenzie, De Montfort University, Leicester (rraghavan@dmu.ac.uk) Raymond Ceccotto and Daniela Janeva ( ARFIE), Germain Weber  and Andreas Kocman ( University of Vienna , Austria), Jackie Vandevelde (APEMH, Luxembourg); Eline Coolens and Karel Devuyst (Zonnelied, Belgium), Lara Furieri, Christine Melon ( CADIAI, Bologna, Italy), Patrice Morel (Lesgenetdor, Brest, France)

Abstract
The progressive ageing of European society is an issue affecting the European Union as a whole. The AGID project is about developing a web-based training platform for frontline staff and professionals on ageing and intellectual disability issues. AGID brings together, at a European level, various partners involved in the care and support of disabled people whether they are service providers or research centres. AGID gathers the expertise of two university bodies in the field and the experience of service providers from several European countries with the aim to improve the quality of life of people with intellectual disabilities users through web based training programme.

The aim of the AGID  project was to (1) improve the quality of life of people with ID by increasing the knowledge and competency of frontline staff and professionals, (2)  involve people with intellectual disabilities, their families, professionals and frontline staff in the formulation and development of the training, and (3) Reflect the UN-Convention on the Rights of People with Disabilities in all the steps of the project.
The AGID Training platform online course features a series of 6 Modules consisting of:
1. Ageing Process
2. Pathological Ageing in People with ID
3. Person- Centered Planning
4. Social Networking and Communication of Elderly People with ID
5. Emotional Regulation for Front-line staff
6. Taking Care: a Complex Professional Stance
This workshop will discuss the six modules and explore staff training perspectives of participants.

Time
09.00 am - 12.00 am
Half day workshop

Target Audience

• Medical/health/allied health professionals
• Policy makers and government officials
• Direct care/support staff
• Family members and advocates
• Managers, administrators, supervisors
• Research personnel
• Graduate and post graduate students

People with Intellectual Disabilities as Suspects and Offenders

Presenter(s) and Affiliations
Glynis Murphy, Prof of Clinical Psychology & Disability, Tizard Centre, University of Kent, Canterbury Kent CT2 7LR.
Jane McCarthy, Consultant Psychiatrist and Clinical Director, St Andrew's Healthcare Nottinghamshire, & Institute of Psychiatry PO Box 23, King's College London, De Crespigny Park, London,SE5 8AF.
George Wood, Forensic Psychiatrist and  President-Elect of the International Academy of Law and Mental Health, 1000 Brannan Street, Suite 488, San Francisco, California 94103.
Peter Langdon, Senior lecturer in Clinical Psychology, Tizard Centre, University of Kent, Canterbury Kent CT2 7LR.

Abstract
People with intellectual disabilities (ID) inevitably come into contact with the Criminal Justice System at times, like any other citizen. Evidence is mounting about the extent to which people with ID appear at police stations, courts, and in prisons. In all of these contexts, they have difficulties exerting their rights and they are known to be especially likely to make false confessions. Many jurisdictions have safeguards in place but these frequently seem to be insufficient. A number of treatment programmes have been developed to support people with ID who have been accused of or have committed crimes. These are outlined, and useful risk assessment strategies are described.

Time
09.00 am - 04.30 pm
Full day workshop

Target Audience

• Medical/health/allied health professionals
• Policy makers and government officials
• Direct care/support staff
• Managers, administrators, supervisors
• Research personnel
• Graduate and post graduate students

Education for Learners with Intellectual Disabilities: Teaching Strategies for Improving Quality of Life

Presenter(s)
Scott Thompson, Associate Professor, Faculty of Education, University of Regina, Department Head, Educational Psychology, Education Team Co-Lead of the www.disabilitypolicyalliance.ca


Abstract
Education is a fundamental human right, recognized by the United Nations in the Charter on the Rights of People with Disabilities. Participants in this workshop learn how education enhances the quality of life of learners with intellectual or developmental disabilities. Useful teaching strategies, explored through teaching mathematics to learners with Down syndrome, are offered for: playing with a purpose in the early years; settling in to school; focusing on the ‘big ideas’ of curriculum in the elementary and middle school years; inclusive approaches to secondary education; and continuing learning throughout adult life. This practical workshop provides examples and strategies for participants to use in their work.

Time
09.00 am - 4.30 pm
Full day workshop

Target Audience

• Education personnel,teachers, teacher aides
• Direct care/support staff
• Family members and advocates
• Research personnel
• Graduate and post graduate students

Shaping Research to Practice for Low and Middle Income Countries: Learning from Experience and Developing New Pathways

Presenter(s) and Affiliations
Roy Brown, PhD, is immediate Past Director of the Academy and Emeritus Professor at University of Calgary, Canada, and Flinders University Australia.
Roy McConkey, PhD, is Professor of Learning Disability at the University of Ulster, Northern Ireland.
Trevor R Parmenter, PhD, is professor emeritus in the Sydney Medical School, University of Sydney, Sydney, Australia, and Adjunct Professor in the School of Rural Medicine at the University of New England.

Abstract
This workshop is of great value to those who have a strong interest – but need to understand better how – to promote work in the field of intellectual disabilities in lower and middle income countries (LAMICs). The three workshop leaders share their extensive experience in LAMICs, and invite discussion on applying the strategies they have found useful, the lessons they have learned, and the best practices they have found to be viable. The aim of these discussions is to consider what knowledge transfer strategies are most useful in LAMICs, and how research can improve policy and services in LAMICsd. Discussion summaries are shared with participants, and ongoing on line discussion is encouraged.

Time
01.30 pm - 4.30 pm
Half day workshop

Target Audience

• Relevant to all those who work in and others wishing to carryout research, practice and consulting in LAMIC countries

Using a Quality of Life Approach with Individuals with Disabilities and Their Families: What works to enhance life quality?

Presenter(s) and Affiliations
Ivan Brown, PhD, Director, IASSIDD Academy on Education, Teaching, and Research, Adjunct Professor, Centre of Applied Disability Studies, Brock University, St. Catharines, Canada.
Alice Schippers, PhD, Co-chair QoL SIRG, Director Disability Studies Netherlands.
Dana Roth, PhD, Director, Research and Development Unit, Beit Issie Shapiro, Ra'anana, Israel.
Luigi Croce, MD, Residenza Sanitaria per Disabili “Villa Zanardelli”, Brescia, Italia; Università Cattolica del Sacro Cuore, Dipartimento di Pedagogia


Abstract
Quality of life is an important guiding principle in the field of disability but, more important, it provides a practical comprehensive approach to providing support to people with intellectual disabilities and their families. This hands-on workshop introduces participants to the principles and values we use in applying the quality of life approach. These are paired with assessment and intervention methods that have proven useful in enhancing quality of life. Practical examples and tools are provided, reflecting experiences of workshop leaders in four countries. Finally, as the quality of life approach must be linked to policy and service goals and practices, this workshop provides a framework for ensuring this.

Time
01.30 pm - 04.30 pm
Half day workshop

Target Audience

• Support workers
• (Representatives of) Persons with disabilities and their families
• Policymakers
• Researchers

A Comprehensive Approach to Health and Health Care for People with Intellectual Disabilities as They Age

Presenter(s) and Affiliations
Philip McCallion, PhD, Professor & Director, Center for Excellence in Aging & Community Wellness, University at Albany, Albany, NY, USA
Mary McCarron, PhD, Professor & Dean, Faculty of Health Sciences, Trinity College Dublin, Dublin, Ireland.

Abstract
Data from the Intellectual Disability Supplement to The Irish longitudinal on Ageing (IDS-TILDA), the Core indicators (United States) and other international studies are used to describe the key health concerns, co-morbidities, and health care experiences of people with intellectual disabilities as they age. Key practical recommendations are provided for health assessment, health promotion, and chronic condition management (particularly targeting dementia, diabetes and mental health concerns). Key challenges such as lack of screening, poor access to health education, and polypharmacy are also addressed.

Time
01.30 pm - 04.30 pm
Half day workshop

Target Audience

• Support workers
• (Representatives of) Persons with disabilities and their families
• Policymakers
• Researchers

Diagnosing Autism Spectrum Disorders in adults with Intellectual Disabilities

Presenter(s) and Affiliations
Dr. Tanja Sappok, Königin Elisabeth Herzberge Hospital, Berlin, Germany
Thomas Bergmann, Königin Elisabeth Herzberge Hospital, Berlin, Germany

Abstract
Autism Spectrum Disorders (ASD) is a frequent but highly underdiagnosed co-morbidity in individuals with Intellectual Disability (ID) and leads to high rates of challenging behaviors, additional mental disorders, psychiatric service use, and psychopharmacological treatment. Identification of the underlying disorder, namely ASD, is necessary to allow for more tailored treatment options, improve mental health, and living up one's personal and professional potentials. However, there is a lack of diagnostic instruments specifically designed for identification of ASD in adults, in particular in those with comorbid ID.
According to ICD-10/DSM-5, diagnosing ASD is based on assessment of past and current social and repetitive behaviors and interests. Standardized, evidence-based instruments can support clinicians and researchers in the diagnostic process. Widely used measures such as the Autism Diagnostic Observation Schedule (ADOS), the Autism Diagnostic Interview-Revised (ADI-R), and the Social Communication Questionnaire (SCQ) were developed and calibrated in children. This workshop will inform about their diagnostic value in adults with ID. Moreover, instruments specifically developed for adults with ID and suspicion of ASD will be presented, e.g., the Pervasive Developmental Disorder in Mental Retardation Scale (PDD-MRS), the Autism-Checklist (ACL), the Diagnostic Behavioral Assessment for ASD - Revised (DiBAS-R), and the Music-based Scale for Autism Diagnostics (MUSAD). Video-based behavioral analysis in a familiar surrounding and new developments, e.g., the impact of the level of Emotional Development for diagnosing ASD, will complement the diagnostic process. ASD diagnoses are finally assigned by a multidisciplinary team consensus conference considering the results of the measures applied, the current observations of various team members, and the past medical history according to the ICD-10 diagnostic research criteria for autism or atypical autism [F84.0/F84.1].
The workshop will propose an effective screening and confirmation diagnostic work-up for adults with ID and suspicion of ASD that is resource-oriented and fulfills best scientific standards. Participants are invited to exchange their own experiences in the process of diagnosing ASD in individuals with ID.

Time
01.30 pm - 04.30 pm
Half day Workshop

Target Audience

• Support workers
• Medical Staff
• clinical Psychologists
• (Representatives of) Persons with disabilities and their families
• Policymakers
• Researchers