This report summarizes the findings and recommendations from a pre-summit activity for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. The report was developed by a working group of experts in caregiving, dementia, and intellectual and developmental disabilities (IDD) and organized by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in partnership with the Rehabilitation Research and Training Center in Developmental Disabilities and Health at the University of Illinois at Chicago and the Alzheimer’s Association. The purpose was threefold:
assess the current state of research, policy, and practice, and develop recommendations related to caregiving supports for older adults with intellectual and developmental disabilities;
translate the contributions of these findings to the greater dementia care agenda; and
promote inclusion of issues particularly relevant to intellectual disability and dementia concerns as part of the Summit platform.
The Report examined the foundational similarities and differences in focal areas affecting people with dementia, both with and absent IDD. Considered were five major areas related to care and caregiving:
(1) family caregiving interventions;
(2) supportive care settings;
(3) effects of diversity;
(4) screening and early detection; and,
(5) bridging service networks.
Recommendations are offered in each of these areas, including how funding and actions might be undertaken and by which federal or non-federal organizations.
Prof. Tamar Heller, RRTCDD Director and chair of this ad hoc working group will be speaking at the Summit, and conveying the workgroup’s recommendations.
It’s 2009, and I’m in Philadelphia to deliver a talk at a conference. During a long break, I decide to visit the Mutter Museum. I teach anatomy, and the Mutter houses a collection of so-called medical curiosities. I examine the wall of skulls, the cases full of skeletons, and go downstairs, where preserved specimens wait for inspection.
And there I am confronted with a large case full of specimen jars. Each jar contains a late-term fetus, and all of the fetuses have the same disability: Their spinal column failed to fuse all the way around their spinal cord, leaving holes (called lesions) in their spine. Some extrude a bulging sac containing a section of the cord. These balloons make the fetuses appear as if they’re about to explode. This condition is called spina bifida.
This four-page resource provides health department staff with five action steps for the development and delivery of inclusive health promotion programs and activities. Each action step provides helpful resources and tools for local health departments to ensure all community members are engaged in health promotion activities. Click here to view the fact sheet.
The National Association of County and City Health Officials (NACCHO) works with local health departments to promote the inclusion and engagement of people with disabilities in all public health programs, products, outreach, and services.
NACCHO encourages health departments to include people with disabilities when creating and delivering health promotion activities. This fact sheet provides five action steps for local health officials to ensure that the development and delivery of health promotion programs and activities are inclusive and accessible.
NACCHO also recommends the Guidelines for Disability Inclusion in Physical Activity, Nutrition, and Obesity Programs and Policies Implementation Manual to inform disability inclusion in community health promotion strategies.
People with Disabilities: Health Department Strategieshttp://bit.ly/2seoac8
Guidelines for Disability Inclusion in Physical Activity, Nutrition, and Obesity Programs and Policies Implementation Manual http://bit.ly/2sJgUbL
The President’s Council on Fitness, Sports & Nutrition: I Can Do It, You Can Do It! http://bit.ly/2sJlSVQ
This fact sheet was made possible through support from the Centers for Disease Control and Prevention (CDC), Cooperative Agreement #5NU38OT000172-04-00 (specifically, this project was supported by the Disability and Health Branch within the National Center on Birth Defects and Developmental Disabilities).
Join ANCOR in recognizing the dedication and accomplishments of outstanding Direct Support Professionals and expressing our appreciation for their vital contribution to communities across the country. We’re already preparing for a big week of celebration for these amazing individuals. More is definitely on the way, but in the meantime check out our DSP Toolkit and the newly captioned ‘Cost of Compassion’ video.
Plan Your DSP Recognition Week Celebration
We’ve gathered a list from past celebrations across the country. Look here for ideas to plan a celebration of DSPs in your organization and community.
Introducing our *NEW* DSP Recognition Week logo! Click here for a version you can use for your social media profiles!
You can also order from one of ANCOR’s DSP Week stores to help kit out your staff as you show appreciation to your DSPs! One store will be for purchasing individual items and the other for bulk orders, so whether you have a host of DSPs to thank or just a few, we can accommodate your need!
People with intellectual disabilities are vulnerable in healthcare environments. They experience health and healthcare inequalities, and when admitted to general hospitals are at a greater risk of patient safety incidents. This is well known in specialist services, but less recognized within primary or secondary healthcare. The most significant barriers to safer and better healthcare appear to include ‘invisibility’ of people with intellectual disabilities within health-care systems, widespread lack of staff understanding of intellectual disability, the vulnerabilities of people with intellectual disabilities, and the reasonable adjustment they may need in order to access health-care services. They may be ‘invisible’ to pharmacists in general hospitals. This article aims to raise awareness among those pharmacists and others providing care and support to people with intellectual disabilities in hospital in relation to how pharmacists can contribute to safety. Medication is the main therapeutic intervention in this population. Research is needed to determine the role of pharmacists in improving health outcomes and reducing health inequalities in this vulnerable population group when they are admitted to general hospitals. Full article
To examine and compare undergraduate healthcare students’ attitudes toward people with physical or intellectual disabilities in Greece.
The experience that people with disabilities have with health care is a complex interaction between their medical condition and the social and physical environment. Attitudes of the nursing and healthcare staff affect the quality of care and people’s adaptation to their disability, self-image and rehabilitation outcomes.
Descriptive cross-sectional survey.
Nursing, Social Work, and Medicine students (N=1007, 79.4% female) attending three Universities (Athens, Crete) completed during 2014-2016 two standardized scales regarding physical (ATDP – B) and intellectual disability (CLAS – ID). Descriptive and multivariate logistic regression analyses were performed.
Attitudes toward physically disabled people in Greece (ATDP – B scores) were poor with scores just above the mid-point. Medical studies and higher knowledge and contact with individuals with physical disabilities signified marginally more positive attitudes. Gender and age displayed no associations with attitudes. Regarding intellectual disability (CLAS–ID scores), nursing students had slightly less positive attitudes in ‘Similarity’ but more positive attitudes in ‘Sheltering’ subscales. Previous work and contact was related to more favourable and higher age to less favourable ‘Similarity’ and ‘Sheltering’ attitudes. Males had higher ‘Exclusion’ scores. Those who knew people with intellectual disabilities had less favorable ‘Empowerment’ attitudes. Knowledge was related to more positive attitudes in all four CLAS – ID subscales.
Greek health and social care students showed poor attitudes towards people with physical and intellectual disability.
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Health and medical information is commonly shared via web sites, social media, smart phone apps, and even text messaging. However, these high tech options are not accessible to all people. Adults with disabilities in New Hampshire (NH) are significantly less likely than adults without disabilities to have access to information electronically.
In New Hampshire, adults with mobility and cognitive limitations are significantly more likely to experience diabetes (26%) than adults with no disability (9%).1 The disparity in diabetes prevalence results in higher costs to Medicaid programs and poorer health outcomes and quality of life for people with disabilities.2 Promising diabetes prevention care for adults with disabilities includes accessible and inclusive health promotion.
Several factors contribute to a higher risk of diabetes, including:
• Unhealthy eating habits that result, in part, from uninformed and limited food choices;
• Lack of physical activity due to social, environmental, and behavioral barriers; and
• Lack of knowledge and support to address risk factors for diabetes.
NACCHO’s Health and Disability Program is proud to announce a new online e-learning module titled, “Health and Disability 101: Training for Health Department Employees.” The purpose of this training is to educate health department staff about the benefits of including people with disabilities in all public health programs, products and services. To access this free training, click here.
This course can be accessed through NACCHO University, NACCHO’s learning management platform. In order to view the course, you will need to create a MyNACCHO account by clicking the “sign in” button on the top right. Follow the prompts to create a new account and you will be re-directed back to the NACCHO University homepage. When signed-in, you can access your account by clicking on your name on the top right.
Pain is difficult to identify when people cannot communicate. If pain is not identified, it cannot be managed and causes stress. Pain assessment is essential in order to identify pain. Pain assessment requires a combination of knowledge, health assessments and observations.
Background Individuals with intellectual disability experience the same chronic diseases and conditions as the general population, but are more likely to have physical and psychological co-morbidities, resulting in a higher risk of experiencing pain and having more frequent or severe pain.
Method This position paper aims to highlight the importance of pain assessment for people with intellectual disability. Results As people with intellectual disability live within the community and/or remain in the family home, they are accessing a wide range of healthcare services. This necessitates that nurses across all care settings are knowledgeable regarding appropriate/alternative pain assessment methods for people with intellectual disability. While many pain assessment tools are available for use with the intellectual disability population, they are often not well established or infrequently used to establish their validity.
Conclusion Although self-report is the gold standard in pain assessment, pain assessment for people with intellectual disability is often challenging as they may be unable to self-report their pain due to their levels of communication or cognitive ability. Assessment requires a combination of approaches amalgamating: pain assessment, health assessment and observation of behaviours.