The Balance between Choice and Control: Risk Management in New Zealand Intellectual Disability Services

Support for people with intellectual disability (ID) in New Zealand has been through great changes in the past 20 years, many of them positive and driven by a vision for real participation in the community for all New Zealanders. Movement from a service model of institutional care to a model that supports community participation, flexibility, and choice has been steady and in many cases has shown positive change in people’s lives. There is growing concern, however that the pace of progress has slowed, and that people with intellectual disabilities continue to experience barriers to living an \u27ordinary\u27 life in New Zealand. Approximately 17% of New Zealanders report that they have a disability, of which 5% (33,700) have an intellectual disability. The Ministry of Health is responsible for strategic planning and funding needs assessment and disability support for adults with disability, including approximately 6,500 people with intellectual disability who require 24 hour residential support. Studies completed in New Zealand, as well as international studies, suggest that people with intellectual disability experience greater vulnerability to poor health outcomes, higher behavioural support needs, and are at greater risk of abuse or neglect, compared to the general population. This report examines the approach to risk management in New Zealand, particularly in the context of services for people with intellectual disability. It reviews the development of the philosophy of service provision to provide necessary background, followed by an analysis of how risk management is perceived and applied by a number of stakeholders, including people with intellectual disability and their families. Both individual and systems level risk is explored

Developing an Operational Definition of Intellectual Disability for the Purpose of National Health Surveillance

This report summarizes recommendations that were developed to establish a more consistent approach to operationalizing the case definition for the purpose of public health surveillance among adults with intellectual disability in the United States. The approach included consideration of well established conceptual definitions, such as in the International Classification of Disability, Health, and Function (ICF), and the most recent version of the definition established by the American Association on Intellectual Disability (AAIDD). Additionally, the definitions used in current national and state level major data collection efforts, as well as those used in targeted research studies were considered, with a recognition that these sources are likely to remain the foundation upon which a national surveillance system will be built, and that any recommended definition must accommodate or ‘fit over’ those used in current data collection

Massachusetts Department of Developmental Services Medication Review

This presentation by Alixe Bonardi goes over the use of pharmaceutical drugs among adults with developmental disabilities, touching on why adults use drugs, when, and the situations that lead pharmacists to prescribe certain drugs. Presented at the National Association of State Directors of Developmental Disabilities Services (NASDDDS) Reinventing Quality Conference 2012

Educating Dental Health Professionals about People with Intellectual and Developmental Disabilities

Dental schools and dental hygiene programs are required to incorporate specialized training in their programs to serve people with special needs, however people with intellectual and developmental disability (I/DD) continue to experience poor oral health outcomes. Access to clinicians with the desire and skill to care for people with I/DD remains a challenge. There is a need to understand the best approaches to improve access, and to reduce disparity in oral health, for this vulnerable population representing approximately 1-3% of the general population. Researchers are systematically investigating the literature to uncover evidence of effective approaches to improve access and to support good oral health behaviors. These approaches should be integrated into educational curricula

A Systematic Review of Oral Health Interventions to Reduce Disparities in Adults with Intellectual Disability: Results of a Novel Approach

Research consistently shows that people with I/DD experience poorer oral hygiene, higher prevalence and severity of periodontal disease, and higher incidence of untreated caries when compared to the general population. In a systematic review funded by the Centers for Disease Control (NCBDD), researchers rigorously evaluated evidence for a wide range of interventions that offer the potential to reduce those disparities. More than 4,000 titles/abstracts were identified from a literature search that included peer reviewed as well as gray literature. After criteria were applied to identify the I/DD population and intervention-studies only, the number of full text reviews was reduced to 125, and intervention categories were identified as follows: 1) sedation, appropriate use in the population; 2) education and behavioral interventions for treatment and prevention directed at individuals, caregivers and providers; 3) prevention strategies such as fluoride and chlorhexidine; and 4) access issues related to financing and funding. Researchers completed data extraction using a structured on-line tool, the Systematic Review Data Repository. The broad range of topic areas required researchers to include clinical experts in the structured review providing valuable input into the interpretation of findings, providing a measure of external validity for each reported study. A research methodologist accomplished a separate review of the studies’ internal validity, including design and statistical analyses. Results of the complimentary examinations of validity were included in the overall measure of the quality of each study and used in assigning a level of evidence to each study that was included for each topic

Systematic Review of Evidence of Interventions Addressing Disparities in Oral Health for Adults with Intellectual Disabilities: Year 2

Preventive oral health care and treatment for individuals with an intellectual or developmental disability (I/DD) is a leading public health disparity. Evidence points to poorer oral hygiene, higher prevalence and greater severity of periodontal disease, as well as a higher incidence of untreated caries in the I/DD population. In year 1 of this systematic review, the literature was searched and screened for inclusion, developing an extensive database of interventions to increase access and behavioral oral health interventions for individuals with I/DD. The objective of year 2 of the systematic review is to examine this literature in depth. Data review and assessment will be conducted in an electronic repository. Incorporating a public health approach, including social, personal and environmental factors, the team will assess, sort and summarize the interventions, providing a better understanding of common themes. Expert clinicians and methodologists will conduct an assessment of the evidence with a consideration of the execution, design suitability, number of studies available, consistency of findings, effect size, and whether expert opinion was used. In addition, findings resulting from a lack of evidence due to poor study design, small sample size, inconsistent findings, small effect sizes, or other limitations in the study will be identified and catalogued. Reviewed findings will be synthesized to identify effective interventions to reduce oral health disparities in adults with I/DD. These findings will be presented, in addition to a catalogue of promising interventions that have yet to be demonstrated but nevertheless are viewed as promising approaches to reduce disparities

Interventions to Improve Access and Health Behaviors in Individuals with Intellectual and Developmental Disability: A National Resource for Oral Health

The presentation will describe the process by which the systematic review, designed to uncover interventions to reduce oral health disparities in individuals with intellectual and developmental disability, was conducted, along with the search strategy, interventions and outcomes measured. The presentation will convey the evidence base and promising practices for access, behavior, and prevention to generate discussion among researchers, clinicians and policy makers, about future study topics

An Intervention to Monitor and Reduce Fall Rates Among Adults with Intellectual Disability (ID)

Courtney Noblett-Dutra, Alexandra Bonardi, Emily Lauer and Sharon Oxx present their research on fall rates among adults with intellectual disabilities and possible ways to reduce them. Presented at the 2012 International Association for the Scientific Study of Intellectual Disability (IASSID) World Congress

Assistive Technology (AT): Opportunities for Interdisciplinary Research, Education, and Service Delivery

The World Health Organization has estimated that 10% of the world’s population (650 million people) has a disability. Assistive Technology (AT) has the potential to improve function for individuals with disabilities. Research and development must to focus both on universal design approaches for the population, as well as customization to meet individual functional demands. This mini-symposium will present the trends driving the need for AT, case studies demonstrating solutions to functional challenges, and evidence-based policy measures that are being implemented to meet the needs of people with disabilities living in the community. Since 1991, UMass Lowell has operated an AT Program through which individuals with disabilities and community organizations meet with teams of students and faculty to design customized solutions. Symposium participants will discuss the development of population-level measures and examine indicators linking AT device use to psychosocial well-being: ultimately informing AT policies regarding access and provision. Participants will also to discuss challenges in translation of AT research due to the diversity of users and the functional implementation of AT solutions. Ultimately, participants will recognize the complex nature of AT solutions for persons with disabilities, and provide input on a strategy for a multidisciplinary collaboration to foster a novel person-center approach to research in this area

Uncovering the evidence: Systematic review of interventions to reduce oral health disparities between adults with Intellectual Disability and the general population

Oral health is a public health concern for people with intellectual or developmental disabilities (I/DD). Research consistently shows that the population with I/DD experiences poorer oral hygiene, higher prevalence and severity of periodontal disease, and higher incidence of untreated caries when compared to the general population. Poor oral health can cause chronic pain, affect the ability to eat and communicate, and adversely affect physical health and quality of life. Intervention strategies include enhanced prevention, increased routine care, expanded insurance coverage, and training for dentists and hygienists. Research is needed to identify the most effective interventions. A standard systematic literature review for evidence-based practices is not adequate for identifying and evaluating the evidence in areas such as health policy and individual health behaviors. This presentation describes the structured processes used in uncovering evidence where there is limited published literature that includes 1) the I/DD population and 2) traditional scientific reviews of interventions addressing their oral health. By adapting a transdisciplinary conceptual model, which could be applied to a multitude of disciplines, we identify the best available evidence as collected through a conventional systematic review, allowing for additional emphasis on the personal, social and environmental factors that affect the I/DD population. The process includes search strategies to include peer reviewed and gray literature, along with other associated programs, policies, and practices, resulting in a unique evidence base from varied sources. Additionally, we frame and refine a formal plan to review the outcomes and establish a level of evidence for the identified interventions