Aging with disability
Authored by the National Association of States United for Aging and Disabilities
Ban Ki-moon, Secretary-General of the United Nations, has stated that disability is a very normal part of the human condition and almost everyone will be temporarily or permanently impaired at some point in life.
Disability, or various levels of impaired physical ability, can occur at any age. Some older adults have been living with a disability for many years. These may be conditions that developed in childhood, such as post-polio syndrome, pulmonary disease, or Type 1 diabetes. Other conditions may arise in adulthood, such as spinal cord injuries, multiple sclerosis, or arthritis. And some disabilities are fairly specific to old age, such as osteoporosis. Another variable is that some disabling conditions are progressive, while others are static.
Whether lifelong or late-onset, progressive or not, older people whose function and ability to perform activities of daily living are limited by their physical health are considered to be aging with disability.
However, even individuals who are considered to be aging with disability cannot be treated as a homogenous group. Researchers at the Rancho Los Amigos National Rehabilitation Center note that many, if not most persons who live 20 or more years with a disability, or who are 40 years of age or older, encounter substantial new medical, functional, and psycho-social problems that were neither expected nor planned for at an earlier age. People with disabilities that emerged earlier in life also have higher levels of secondary medical conditions than those without early-life disabilities (e.g., the development of cardiovascular disease in spinal cord injury patients). Depression is another common secondary condition to physical disability.
Aging can be described as a continuous process of adjustment to physical, social, and environmental changes. For people with disabilities, the aging process may require adjustment to new ailments, side effects to long-term disabilities, and/or more rapid levels of physical decline than their peers (termed “aging swiftly”).
In the United States, medical advancements have contributed to increased life expectancies for people with lifelong disabilities. Concurrently, the rapid growth of the older adult population has led to a higher prevalence of late-onset disabilities. Therefore, the United States is experiencing an overall growth in people who are aging with a disability – and this is a unique population with specialized needs.
Role of philanthropy
Many foundations that award grants in the field of aging are helping to meet the needs of individuals with disabilities. Grantmakers targeting the frail, vulnerable, and underserved are serving the disabled, either intentionally or unintentionally. However, there are also examples of grantmaking that specifically aim to reach older, disabled persons:
- For more than 10 years, the Albany Guardian Society has supported the Rensselaer Polytechnic Institute’s Multidisciplinary Design Laboratory in its efforts to improve the design of systems and products that help older adults remain independent. Engineering students and faculty work on real-world applications such as mobility enhancement, lighting, assistive devices, and environmental design. Through research and design, students are learning more about the challenges facing older adults and people with disabilities, and the importance of universal design approaches.
- The Blowitz-Ridgeway Foundation of Illinois helps support the Dental Lifeline Network’s Dental HouseCalls Program, which provides dental treatment to Chicagoans who are homebound or live in nursing homes and are unable to travel to dental offices. Dentists donate about 58% of the cost of treatment.
- The CEA Foundation (affiliated with the Consumer Electronics Association) has funded the development of Virtual Senior Centers with Selfhelp Community Services of New York. This innovative program enhances the lives of homebound seniors by utilizing computer, video, and Internet technology. The interactive experience of participants reduces social isolation, promotes wellness, provides better access to community services, and enhances independent living. Other funders of this program include the UJA-Federation of New York, AARP Foundation, The Harry & Jeanette Weinberg Foundation, and the Harriet and Robert H. Heilbrunn Fund.
- The Eisner Foundation recently supported a program at the California Aquatic Therapy and Wellness Center to provide aquatic therapy and rehabilitation programs for disabled youth and seniors.
- The May and Stanley Smith Charitable Trust helps support Wilderness Inquiry, a non-profit organization that provides wilderness experiences to youth, families, seniors, and persons with disabilities. The age range of participants is 18-90, with the average age being about 50. “Share the Adventure” integrates persons with disabilities with those who do not have disabilities for group activities, with adaptive equipment and staff support provided as needed.
The visibility of aging and disabilities has always been present in society, although research and foundation funding has often focused on either aging or disabilities. Most issues related to aging and disabilities can be labelled as “trending,” because there is much to learn about all types of disabilities in the older population. However, the following are some key areas of ongoing research where funders have the opportunity to provide start-up support:
1. Health Promotion and Disease Prevention
Prevention activities have been well-documented in literature as leading to higher quality of life and lower medical care costs. As documented by the Centers for Disease Control and Prevention (CDC), people with disabilities need health care and health programs to remain healthy, active, and a part of the community. To stay healthy, people with disabilities require health care that meets their needs as a whole person and not just as an individual with a disability. Having a disability does not mean a person is not healthy or that he or she cannot be healthy. All people, regardless of level of disability, require the tools and information necessary to make choices to promote health and prevent illness. Most individuals can remain or become healthy by learning about and living healthy lifestyles that include committing to regular medical checkups, using medicines wisely, and eating healthy foods in healthy portions.
The federal government has encouraged its network of Aging and Disability Resource Centers (ADRCs) to make health promotion and disease prevention activities a part of their efforts to streamline access to long-term services and supports for older adults and individuals with disabilities. ADRCs can promote health by offering information, assistance, and resources to individuals and families to support planning and informed decision-making about wellness and independence. Grantmakers can also support these efforts by assisting community health outreach programs that target older adults and persons with disabilities, funding the development of health education resources, supporting efforts that focus on accurate and effective medication use, promoting vaccination programs, and funding nutrition education programs.
2. Health Spending and Physical Disabilities
Several studies have examined health care costs for older adults with disabilities. According to a recent study in Disability and Health Journal, health care expenses for people with persistent disabilities are double the health costs of people with temporary disabilities. For the persistent disability group, median health spending was $4,234, and out-of-pocket spending was $591. For those whose disability was temporary, those amounts were $1,612 and $388, respectively. Financial burden ratios, which are the percentage of family income dedicated to out-of-pocket spending, were 1.59 for the persistent disability group versus 0.71 for the temporary disability group. This suggests a positive correlation between persistent disabilities and higher health costs. While the feasible options for grantmakers to affect health care costs are limited, they can help reduce the financial burden of disability by funding such programs as nutrition outreach designed to reach seniors and disabled persons in their homes and communities, or programs that seek to improve the delivery of in-home services to persons with disabilities.
3. Successful Aging and Early-Onset Disability
While disability rates increase with age, adults aged 18 to 64 make up more than 52% of the total disabled population. The total number of adults aging with early-onset disabilities is estimated to be between 12 and 15 million. This number is expected to rise in the coming decades; therefore, much needs to be accomplished to enhance the currently-limited services for adults with early-onset disabilities in order to enable the current population to age more successfully.
Since 1986, the Kessler/Harris surveys have tracked life satisfaction of adults with disabilities, who consistently report less satisfaction with their lives than people living without a disability. In 2010, individuals of all ages with disabilities rated their life satisfaction levels as very satisfied or somewhat satisfied at 62% and 88%, respectively. While life satisfaction increased to 69% for individuals with disabilities aged 45-64, this level of life satisfaction remains significantly lower than life satisfaction for people without disabilities (86%). To help adults with early-onset disabilities age successfully, elevated risk factors for aging-related chronic diseases and secondary conditions, including smoking, obesity, inactivity, and diminished social and economic supports, must be addressed. Furthermore, increasing care provider knowledge about healthy aging, and successfully integrating disability and aging service systems, are both transformative steps that will help adults with early-onset disability to age more successfully.
4. Aging Parental Caregivers
In the United States, the dominant residential arrangement for people with lifelong disabilities is family care. For example, 85% of people with intellectual disabilities live at home and receive care from a family caregiver. As people with lifelong disabilities are living longer, there is a need to develop new support structures for this “new” population of older adults with aging caregivers. First, there is a need for quality respite care programs for older family caregivers to enable people with lifelong disabilities to age in place as long as possible. As parental caregivers age, caregiving activities such as driving at night and organizing age-appropriate recreational activities become increasingly difficult.
Respite care is a critical resource that provides a break from caregiving demands and helps support the continuation of successful in-home family care. Second, there is a need for programs assisting older caregivers in developing future care plans for their disabled loved ones. As more people with lifelong disabilities outlive their aging family caregivers, disabled adults will inevitably need to move to new residential settings when a parent passes away. This transition to non-parental care can be a prolonged and challenging process; however, few aging parental caregivers establish a proactive plan for caregiving transitions. Future care planning is an important resource to ensure smooth transitions into new caregiving settings.
5. End-of-Life Care Planning
End-of-life care planning for individuals with lifelong disabilities (such as developmental disabilities) or disabilities acquired later in life (such as dementia) is beginning to mirror end-of-life care planning for the general public. However, because people with developmental disabilities or advanced dementia are often in a dependent condition, they face unique barriers to end of life care planning.
Two arenas where these barriers are most prominent are the health care and legal arenas. Within the health care arena, Medicaid inflexibilities and inadequate hospice worker training can preclude a mentally-compromised person from their right to die at home, especially if their normal living environment is a group home or supportive living residence. In the legal arena, laws regulating “capacity to give consent” create barriers to individual choice for developmentally disabled people and people with advanced dementia attempting to establish advance directives. Bioethicists are researching the best methods for teaching and supporting end-of-life care planning choices for these populations and their guardians. Overall, more people are recognizing that every person, regardless of level of disability, should have access to the full range of end-of-life care choices.
6. Coordination between Aging and Disabilities Services Systems
By 2030, over 20% of the U.S. population is projected to be over 65. This rapidly growing older population will include people aging with lifelong disabilities and people aging into disability. Although there is a considerable overlap in the needs of people “aging with” or “aging into” disability, there is an evident separation in the aging and disability service networks. Traditionally, the aging and disabilities services systems ran on parallel tracks, but the growing cross-population of older adults aging with a disability is exposing this disconnect and demanding change. In the past, training for direct care workers in the disabilities field varied significantly from training for direct care workers in the field of aging. However, in response to the growing demand for a workforce with skills and knowledge to address both aging and disability issues, direct care worker training programs are evolving to equip direct care workers to care for this convergence in populations.
Additionally, legislative changes impacting long-term care services and supports are enhancing coordination and communication between the aging and disabilities services systems as a whole. Recent policy efforts to bridge the aging and developmental disabilities service systems include passage of the National Alzheimer’s Project Act and the Lifespan Respite Care Act, which enable grantees to incorporate people with developmental disabilities into their supportive services. Additionally, the Administration on Aging and the Centers for Medicare and Medicaid Services launched the Aging and Disability Resource Center initiative in 2003 to help bridge the aging and disability service networks by streamlining access to local long-term services and supports for older adults and people with disabilities.
The presence of disability in the older population will continue to rise, despite an increased focus on the concept of healthy aging. Fortunately, having a disability does not preclude older adults from leading an active, healthy, and engaged lifestyle. Grantmakers have the unique opportunity to play a key role in marshalling the resources necessary to ensure older individuals with disabilities are fully integrated into their communities and linked to all available resources that age-friendly communities provide.
Source: National Assoc of States United for Aging and Disabilities December 2011
Basic References on Aging and Disabilities - Reports, Issue Briefs, Fact Sheets
The Role of Prevention in an Aging and Disability Resource Center: A 2010 brief from The Lewin Group that illustrates the relationship between Aging and Disability Resource Center (ADRC) programs and health promotion and disease prevention activities.
Key Goals and Indicators for Successful Aging of Adults with Early-Onset Disability: A 2014 research conducted by Dr. Mitchell P. LaPlante, University of California, San Francisco. The research report focused on the substantial improvements in the longevity of several groups of individuals with early-onset disabilities, with many now surviving to advanced ages.
Aging with and into Disability: Current Status and Future Directions: A 2012 report from the University of Washington’s Aging with a Physical Disability Rehabilitation Research and Training Center detailing its 2011 State of the Science Conference on bridging the gap between aging and disability researchers.
Aging and Disability Information and Referral/Assistance Networks: Challenges and Opportunities: A May 2013 report issued by NASUAD that reflects the expanding scope and increased crossover between aging and disability services within the National Aging and Disability Information & Referral/Assistance Network. A key theme of this report is the continued organizational shift from serving only older adults or individuals with disabilities to serving both populations.
Aging Well with a Disability Fact Sheets: Up-to-date, evidence-based fact sheets produced by the University of Washington’s Rehabilitation Research and Training Center (RRTC) on Aging with a Physical Disability. Topics covered include: Exercise, Depression, Employment, Thinking Problems, and Fall Prevention. The RRTC on Aging with a Physical Disability is funded by the Department of Education, National Institute for Disability and Rehabilitation Research.
Aging Families of Adults with Mental Retardation: Impacts of Lifelong Caregiving: A compilation of findings and reflections from a 12-year longitudinal study of parental caregivers of adult children with disabilities. These parental caregivers faced the dual challenge of providing caregiving for an adult child while also adjusting to their own aging. The research study was supported by many prominent aging organizations, including the National Institute on Aging, the Retirement Research Foundation, and the AARP Andrus Foundation.
National Institutes of Health Fact Sheet on Disability in Older Adults: A fact sheet describing past and current research regarding disability in older adults, along with future expectations on the issue. The fact sheet includes interactive links to additional information on the issue of Disability in Older Adults.
Bridging the Aging and Developmental Disabilities Service Networks: Challenges and Best Practices: A 2012 report by the University of Illinois at Chicago College of Applied Health Science’s Department of Disability and Human Development detailing the unique health and service needs of people aging with developmental disabilities and the need for improved communication and coordination between the aging and developmental disabilities services systems.
End of Life Care for People with Developmental Disabilities: The Last Passages Advisory Council at the Center for Excellence in Aging & Community Wellness, within the University of Albany’s School of Social Welfare, describes the increased life expectancy for people with developmental disabilities, along with the end of life care planning options they face as they age with disability.
Workshop on Disability in America: A New Look - Summary and Background Papers: Marilyn J. Field, Alan M. Jette and Linda Martin, Editors. Based on a Workshop of the Committee on Disability in America: A New Look (2006). This Institute of Medicine report looks at definitions and monitoring of health and disability over time, trends in the causes of disability, and disability within the context of normal aging.
The American Federation for Aging Research publishes a series of lay guides to medical issues impacting older adults, called Infoaging. Topics include osteoporosis, osteoarthritis, and age-related macular degeneration.
Caregiver Interview Series: An expert video series from the Parkinson’s Action Network to help educate the community on caregiving and what federal and state support might be available to spouses, partners, children, friends, and loved ones who help care for a person with Parkinson's disease.
National Information and Referral (I&R) Support Center Monthly Calls/Webinars: The I&R Support Center holds monthly calls/webinars with I&R Specialists concerning topics of interest to those who work in the field of aging and disability (I&R/AD). Notes, PowerPoint presentations, and an audio recording from each call can be found on the monthly call website.
Resource Centers on Aging and Disability
The Aging and Disability Resource Center Program: This collaborative effort of the U.S. Administration on Community Living and the Centers for Medicare & Medicaid Services established ADRCs to serve as single points of entry into the long-term supports and services system for older adults and people with disabilities. ADRCs are located in 50 states and territories, and they provide information and connection with federal, state, and community resources.
The Arc: The Arc is the oldest and largest advocacy organization for people with intellectual and developmental disabilities, working to support their full inclusion and participation in the community throughout their lifetime. The Arc is the premier source for information and resources on this issue; the Arc’s media page includes the most up-to-date news, facts, and publications, including resources on the issues of dying, death and grief support.
Easter Seals: Easter Seals helps individuals with disabilities and special needs, and their families, live better lives through its services, education, outreach, and advocacy. Easter Seals programs, such as adult day services, in-home support and services, community mobility options, wellness programs, and support for family caregivers help people live as independently as possible for as long as possible. Easter Seals services are also expanding to promote independence and connectivity among the growing number of older Americans. This site provides information to connect with local Easter Seals affiliates and service centers.
Organizations Involved in Aging and Disabilities Issues
Administration for Community Living: Federal agency responsible for increasing access to community supports, while maximizing the independence, well-being, and health of older adults, people with disabilities across the lifespan, and their families and caregivers. This site contains information and educational resources for professionals and organizations in aging and disabilities network, and the public.
The Lewin Group Center on Aging and Disability: National health care and human services consulting firm provides clients with policy-focused empirical research, hands-on technical assistance and evaluation services on older adults, people with chronic conditions, and people with disabilities. This site contains information, publications, and educational resources for organizations in the aging and disabilities network.
RTI International - Aging, Disability, and Long-Term Care Division: World-leading research institute dedicated to improving the human condition by turning knowledge into practice. This site includes research exploring issues related to availability, delivery, and financing of health and long-term care and social services for older people and persons with disabilities.
National Association of State United for Aging and Disabilities (formerly the National Association of State Units on Aging): National organization supporting state systems for delivering home and community-based services and supports for older adults and people with disabilities, and their caregivers. This site contains information and educational resources for the nation’s 56 state and territorial agencies on aging and disabilities.
The Center on Health, Aging, and Disability: Research center providing leadership in interdisciplinary research, education, and outreach efforts that promote health and wellness, healthy aging across the lifespan, healthy communities, and optimal participation of individuals with disabilities. This site contains information and educational resources for professionals and organizations in the aging and disabilities network.