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.
Source: How to Bounce Back | Rehabilitation Research and Training Center on Aging With Physical Disabilities
How to Bounce Back – Aging with a Disability Factsheet Series
Jump to Section:
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.
Source: Ten Ways the Affordable Care Act Helps Older Adults and People with Disabilities
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.
Source: National Resource Center on Nutrition and Aging
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.
A new Issue Brief is now available that addresses opportunities to improve nutrition for older adults and also reduce the risk of poor health outcomes. During National Nutrition Month we focus time on the issue of nutrition, because as people age, they may experience malnutrition. Appetite and the body’s ability to process food may decrease with age, while health conditions and use of medications that can affect nutrition status may increase. In addition, limited ability to shop for and prepare food can affect a person’s access to it. Factors like isolation and depression also can affect nutrition.
2pm – 3pm CST
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.
Thursday, February 16, 2017
3:00pm | Eastern Daylight Time
Presented by: Matthew Janicki, PhD
Many organizations are seeing the aging of their clientele and their numbers increase, and concerns are growing about how to deal with age-associated effects evidenced with aging. One such age-associated condition, Alzheimer’s disease (and related dementias), affects a significant number of adults with Down syndrome (about 65% of adults age more than 60) and a proportional number of adults with other causes of intellectual disability (about 6% of adults age more than 60). Many at-risk adults live on their own or with friends, and many affected adults live in small community group homes or with their families. How to provide sound and responsive community care is becoming a challenge for agencies faced with an increasing number of such affected adults. This webinar covers key elements of dementia and how it affects adults with intellectual disabilities, provides a brief overview of screening and assessment strategies and methods, and examines ways that organizations can employ to adapt their current services to make them dementia capable. Specifically covered are the elements and types of dementia, as well its onset, duration and effect, and techniques for adapting environments, aiding with staff interactions and communication, as well as challenges to active and supportive programming. Models for supports depending on the stage of dementia are also discussed, as are training foci areas and community care models that provide for “dementia capable” supports and services. Special attention is given to the use of group homes as a viable community care model.
Matthew P. Janicki, Ph.D. is the co-chair of the US National Task Group on Intellectual Disabilities and Dementia Practices, research associate professor in the Department of Disability and Human Development at the University of Illinois at Chicago and Director for Technical Assistance for the Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD) at the University.
Play recording (1 hr 4 min)