Main conclusions agreed during the Summit on Intellectual Disability and Dementia


ISSN: 0210-1696

DOI: http:/ /

Matthew P. JANICKI University of Illinois at Chicago, USA

Karen WATCHMAN University of Stirling, Scotland, UK

Juan FORTEA ORMAECHEA Centro Medico de Down de la Fundaci Catalana de Sindrome de Down (FCSD) y Servicio de Neurologia def Hospital de la Santa Creu i Sant Pau [email protected]

Y miembros de! International Summit on Intellectual Disability and Dementia

Health indicators in intellectual developmental disorders: The key findings of the POMONA‐ESP project

Source: Health indicators in intellectual developmental disorders: The key findings of the POMONA‐ESP project – Folch – – Journal of Applied Research in Intellectual Disabilities – Wiley Online Library

Annabel Folch, Luis Salvador‐Carulla, Paloma Vicens, Maria José Cortés, Marcia Irazábal, Silvia Muñoz, Lluís Rovira, Carmen Orejuela, Juan A. González, Rafael Martínez‐Leal



The aim of this paper was to summarize the main results of the POMONA‐ESP project, the first study to explore health status in a large representative, randomized and stratified sample of people with intellectual developmental disorders in Spain.


The POMONA‐ESP project collected information about the health of 953 individuals with intellectual developmental disorders.


Diseases such as urinary incontinence, oral problems, epilepsy, constipation or obesity were highly prevalent among the participants; with gender‐differentiated prevalences for certain conditions, and age and intellectual disability level as risk factors for disease. Overmedication was common in the sample, and drugs were often prescribed without any clinical indication or follow‐up. The present authors also found a lack of important relevant information about the participant’s health and a lack of adequate genetic counselling.


Our findings may contribute to a better understanding of health status and needs of people with intellectual developmental disorders and suggest several courses of action to improve their health care.

Using Social Media to Enhance Community Participation

Using Social Media to Enhance Community Participation
Source: Temple Collaborative on Community Inclusion
Looking for ways to be more active in your community? This manual examines ways in which individuals with mental illnesses can use social media networks to enhance community participation. Social media features and functions are examined as well as specific networks such as: Facebook, Twitter, Instagram, LinkedIn, MeetUp, and Yelp. Also reviewed are considerations and risks when using social media. Produced by Temple Collaborative on Community Inclusion

Mathematica Policy Research: Transition Strategies for Youth with Disabilities

Transition Strategies for Youth with Disabilities
Mathematica Policy Research has released three new reports on how transition services are being used for youth with disabilities. The goal of these services is to help youth with disabilities-particularly those receiving Supplemental Security Income (SSI)- find employment and earn higher wages. Mathematica’s reports focus on which services are the most promising according to the current base of evidence.

Guided Group Discovery: Online Participant Workbook for Employment

Online Participant Workbook
Guided Group Discovery assists job seekers who face barriers to employment in identifying jobs that would be a good fit for them and an employer. The LEAD Center released the Guided Group Discovery Online Participant Workbook to help these job seekers in their search. This user-friendly tool allows youth and adults to create a personalized Blueprint for Employment. Each participant receives a private link that allows them to add to, edit, or review their information at any time. The Workbook can also be printed out to review with counselors, teachers, and others. The Online Participant Workbook is a companion piece to a suite of LEAD Center resources for Guided Group Discovery.

Securing rights and nutritional health for persons with intellectual disabilities – a pressing challenge | Food & Nutrition Research

Source: Securing rights and nutritional health for persons with intellectual disabilities – a pressing challenge | Food & Nutrition Research

Svein Olav Kolset Sigrun Hope Kjetil Retterstøl Marianne Nordstrøm Per Ole Iversen


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Persons with intellectual disabilities (ID) are dependent on nutritional policies that have so far not been addressed in a systematic and health-promoting manner in Norway and other nations with a high socioeconomic standard. In many poor countries, such issues have not even been raised nor addressed. Nutritional issues facing persons with ID include the risk of both underweight and overweight. Deficiency in energy, vitamins, essential fatty acids and micronutrients can increase the risk of additional health burdens in already highly vulnerable individuals. According to the World Health Organization, the obesity rates have tripled worldwide the last decades, and recent studies suggest that the prevalence of obesity is even higher for persons with ID than in the general population. This implies additional burdens of life style diseases such as diabetes and hypertension for adults with ID. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM)-5, this group is characterized by intellectual difficulties as well as difficulties in conceptual, social, and practical areas of living. Their reduced intellectual capacity implies that they often have difficulties in making good dietary choices. As a group, they are dependent upon help and guidance to promote a healthy life style. To improve their health, there is a need for improved national services and for more research on lifestyle and nutritional issues in persons with ID. From a human rights perspective, these issues must be put on the agenda both in relevant UN fora and in the respective nations’ health policies.

Keywords: Intellectual disabilities; Nutrition; Health; Obesity; Staff nutritional competence; Specific syndromes; Nutritional policies

Introducing Active Engagement: A new program for teaching cooking skills to individuals with IDD – Webinar

Source: Introducing Active Engagement: A new program for teaching cooking skills to individuals with IDD

Presented by Janice Goldschmidt, MS, RD, LDN

Content Overview:

This presentation will launch a book that will be published by AAIDD in June. The title is Active Engagement: Teaching Authentic Cooking Skills to Adults with Intellectual and Developmental Disabilities. Janice Goldschmidt, the author, will provide an overview of the book that draws on the evidence-based structure of the program as well as the philosophical foundation. A Registered Dietitian and experienced IDD practitioner, Ms. Goldschmidt has spent the last decade working with individuals with disabilities on the development of cooking skills as a form of nutritional intervention and as a way of teaching practical skills to promote independence and self-determination. The presentation will include a brief discussion of some of the epidemiological trends for the IDD population and how development of cooking capacity can help mitigate some of the health-related pathologies associated with the high rates of obesity. The conceptual framework for the program will be introduced, and the author will explain how the emphasis on choice and individualization make Active Engagement very different from traditional cooking programs for the IDD population. Introductory teaching activities using adaptive tools will be addressed, as well as important steps needed to adapt recipes for those with IDD. Food skills, activities that support cooking but that are not directly related, will also be introduced as another means of drawing individuals with IDD into the realm of food preparation.

It is anticipated that this introductory tour of Active Engagement will help caregivers, support staff, educators, and practitioners from a wide range of disciplines develop an understanding of how this new book can be incorporated into programs or activities. At the close of the presentation, the author will take questions and offer problem-solving suggestions in response to specific issues that participants have experienced.

This is an AAIDD webinar. 

State Employment First Policies: Research to Practice State

This brief is the first in a series focusing on Employment First implementation as it relates to one of the seven elements within the High-Performing States in Integrated Employment model1. It examines the background of circumstances under which Employment First efforts began in seven states, and introduces each state’s values, mission, and goals around increasing employment opportunities for people with disabilities. States may use the lessons in this brief to develop an Employment First policy, or to evolve existing efforts.

Download State Definitions, Goals, and Values By Jennifer Bose and Jean E. Winsor

Source: ThinkWork 

ThinkWork is a research and training center focused on advancing employment for individuals with intellectual/ developmental disabilities (IDD). ThinkWork has published this brief as the first in a series of briefs on the implementation of Employment First policies. The principles of Employment First state that individuals with IDD can perform work, should should be paid at minimum or prevailing wage rates for this work, and that providing work-specific supports should be the top support priority.

Promoting Better Health Beyond Health Care

State-level multi-sector actions for addressing the social, economic, and environmental factors that impact health

May 2018

As part of their Better Health Beyond Health Care initiative, the Center for Health Care Strategies (CHCS) conducted a national analysis on innovative ways to promote health. This report discusses the resulting findings and summarizes information from thirty key informant interviews representing programs in 19 states and a small group convening. It explores ways collaboration and cross-sector partnerships can help promote population health and improve outcomes.
Source: Center for Health Care Strategies (CHCS) 

National experts and state policymakers increasingly recognize that health outcomes are influenced not only by providing access to health care coverage and services, but also by state level policies in non-health sectors, such as agriculture, education, and transportation, among others. The Center for Health Care Strategies (CHCS), with support from the Robert Wood Johnson Foundation, conducted a national exploration of state-level strategies to promote health beyond the traditional health care levers. Through review of published and gray literature, interviews with state officials and relevant subject matter experts, in-depth site visits, and a small group convening, CHCS aimed to answer key questions, including: 1. What are the levers across state agencies that could be used to improve population health, either through specific policy action or by exerting state influence? 2. What are examples of diverse state agencies working together and with other community partners to improve population health? 3. What are the key factors necessary to promote effective cross-sector collaborations? 4. What types of technical assistance and facilitation would increase states’ capacity to pursue and successfully implement these actions? 5. How might state-level assistance be targeted to support and scale similar innovation? Following is a summary of key takeaways from this exploration, organized according to: (1) precursors, or foundational factors that help to prime the environment for state action; (2) catalysts that initiate and advance coordination among diverse state agencies; and (3) success factors for effective implementation and ongoing collaboration.
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