Healthcare access is important for all individuals, especially for people with disabilities. However, people with disabilities don’t always receive the healthcare they need. Several barriers can make it harder for them to access critical healthcare services or build optimal working relationships with their providers. Fortunately, by being aware of these barriers, we can overcome them with changes in design, training, and policy.
Perspectives about support challenges facing health workers assisting older adults with and without intellectual disability in rural versus urban settings in Australia
Rafat Hussain , Matthew P. Janicki , Marie Knox, Stuart Wark & Trevor Parmenter (2017): Perspectives about support challenges facing health workers assisting older adults with and without intellectual disability in rural versus urban settings in Australia, Journal of Intellectual & Developmental Disability, DOI: 10.3109/13668250.2017.1326589
Aims: Life expectancy for both sexes in Australia exceeds 80 years, with individuals with intellectual disability also increasingly living into older age. This research aimed to comparatively examine perceptions of staff supporting either older adults or age peers with lifelong intellectual disability.
Methods: This project asked 420 medical, health, and support workers about training adequacy, health services access, and trigger points for premature institutionalisation. This paper is based on a subsample of 196 respondents who provided quantitative and qualitative responses.
Results: There was considerable variation in confidence in supporting ageing individuals, while only 23.7% of doctors reported their training was adequate to support adults ageing with intellectual disability. A lack of services and poor carer health were identified as triggers for premature institutionalisation.
Conclusions: The study revealed key differences in staff perceptions of support provision and training adequacy when comparing ageing individuals with intellectual disability to the general ageing population.
People are living longer. Are you prepared to turn 80, 90, or 100?
This website will help you plan for health events such as hospitalizations, falls, and memory loss that may happen as people get older. This planning differs from end of life care and wills.
Do you know…
- What your rehabilitation options are after a hospitalization?
- How to connect with local services and resources such as in-home care, Villages, and skilled nursing facilities?
- What steps you can take to help prevent falls?
Plan Your Lifespan will help you learn valuable information and provide you with an easy-to-use tool that you can fill in with your plans, make updates as needed, and easily share it with family and friends.
Presented by: Lieke van Heumen, PhD
This webinar will discuss emerging research and practice in supporting social networks of adults aging with intellectual disabilities. After a brief introduction on aging in this population, the webinar will discuss the role of social relations in later life and address the state of knowledge regarding the social support networks of older adults with intellectual disabilities. The webinar will provide a discussion of the role of support services in promoting informal networks and conclude with an exploration of the use of social network mapping and life story work in person-centered planning.
Lieke van Heumen is a postdoctoral research fellow at the Department of Disability and Human Development, University of Illinois at Chicago. Lieke’s primary research interest is the intersection of aging and disability with a focus on supports that contribute to aging well. She believes retrieving the lived experiences of older adults with disabilities by means of inclusive and accessible research methods is key to assuring the meaningful engagement of adults with disabilities in the research process.
International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans
Karen Watchman, PhD, Matthew P. Janicki, PhD, Michael Splaine, MA, Frode K. Larsen, MPH, Tiziano Gomiero, PhD, and Ronald Lucchino, PhD
Source: ID in National Plans
The World Health Organization (WHO) has called for the development and adoption of national plans or strategies to guide public policy and set goals for services, supports, and research related to dementia. It called for distinct populations to be included within national plans, including adults with intellectual disability (ID). Inclusion of this group is important as having Down’s syndrome is a significant risk factor for early-onset dementia. Adults with other ID may have specific needs for dementia-related care that, if unmet, can lead to diminished quality of old age. An International Summit on Intellectual Disability and Dementia, held in Scotland, reviewed the inclusion of ID in national plans and recommended that inclusion goes beyond just description and relevance of ID. Reviews of national plans and reports on dementia show minimal consideration of ID and the challenges that carers face. The Summit recommended that persons with ID, as well as family carers, should be included in consultation processes, and greater advocacy is required from national organizations on behalf of families, with need for an infrastructure in health and social care that supports quality care for dementia.
How to Bounce Back – Aging with a Disability Factsheet Series
Jump to Section:
- What Is Resilience?
- How Do People Cope with Disabilities as They Age?
- What Makes Us Resilient?
- How Can You Build up Your Resilience?
- Resources and References
Living with a disability can be stressful at times. Resilience is a term that describes how we cope with stress. By building up our resilience, we can stay more engaged in life.
What Is Resilience?
Resilience describes our ability to bounce back and keep going after a stressful experience. Different people define resilience in different ways. When we asked people with disabilities to describe resilience in their own words, some descriptions included:
- Bouncing back, or being “buoyant.”
- “Rolling with” or “dancing with” a disability.
- Taking things one day at a time, while also planning for the future.
- Finding a “new normal” as life changes.
- Making the best of life with a disability.
- Trusting that stressful times will pass, like the weather.
No Wrong Door
Source: No Wrong Door
This paper provides concrete examples of how seven No Wrong Door Systems—sometimes called Aging and Disability Resource Centers—are promoting person- and family-centered practice. No Wrong Door Systems involve an array of organizations including Area Agencies on Aging, Centers for Independent Living, and state agencies such as Medicaid agencies and state units on aging. Older adults, people with disabilities, and their families can access services through these agencies in a variety of ways including in person, by telephone, and online.
Individualization is at the heart of person- and family-centered practice. It is an essential component of No Wrong Door Systems, allowing people to have information about their options and facilitate decision making based on individual and family preferences, values, and financial resources. The paper includes a toolkit of resources and contacts for states to learn more and even replicate these practices. A checklist—specifically created for this project—provides a roadmap for states to ensure that No Wrong Door Systems operate in a person- and family-centered way.
This paper is the first in a series of promising practices and emerging innovations reports. This series is a new feature of the upcoming, 3rd Long-Term Services and Supports (LTSS) Scorecard. The LTSS Scorecard—written by the AARP Public Policy Institute and funded by The SCAN Foundation and The Commonwealth Fund—measures state-level performance of LTSS systems that assist older people, adults with disabilities, and their family caregivers.
Executive Summary Ten Ways ACA Helps Older Adults
NHeLP Senior Policy Analyst David Machledt provides a succinct examination of the ways the Affordable Care Act is improving the lives of older adults and people with disabilities. For example, the ACA bars health plans from discriminating against those with pre-existing conditions and since its enactment 3.6 million people with pre-existing conditions have gained health care coverage.
Deadline: May 12, 2017
ACL, in consultation with stakeholders from the aging and disability communities, has drafted a set of principles to guide their work, and to enhance existing programs and services related to serious or advanced illness for older adults and people with disabilities. ACL is now seeking input from the people they serve-older adults, people with dementia, people with all types of disabilities, and families and caregivers, as well as partners in the aging and disability networks. The Draft Principles for a Person-Centered Approach to Serious or Advanced Illness is available here. Send your comments, by May 12, 2017, to AdvancedIllness@acl.hhs.gov.
The NRCNA is designed to assist the national aging network, including local nutrition programs as well as national associations and state and regional agencies involved with aging, in the implementation of the nutrition portions of the Older Americans Act.