By Irene V. Jackson-Brown, PhD, CSA, and Stephanie I. Thomopoulos, MSW, BCD, CMC
Introduction
According to the National Health Interview Survey (2000-2005), slightly over one-third of all adults in the United States have a condition that is “activity limiting”. Between 2000 and 2050, the number of older people is projected to increase by 135 percent. Moreover, the population aged 85 and over, which is the group most likely to need health and long-term care services, is projected to increase by 350 percent. Of particular importance will be the shift from acute to chronic illnesses such as Alzheimer’s Disease, heart disease, and osteoporosis, rather than acute illnesses.*
With chronic illness often comes disability, meaning that long-term care services, such and nursing homes, home health, personal care, adult day care, and congregate housing, will become much more important sources of care. As people age, it is highly likely that many, if not most, will be “disabled” in some way as their ability to engage in medical, physical, or mental activities diminishes.
“Disability” is defined in the federal Social Security Disability Act as the “inability to engage in substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or has lasted or is expected to last for a continuous period of not less than 12 months.” It is likely, then, that caregivers and professionals providing care and services for an aging adult — whether a love one, client, patient, or consumer — will encounter someone who will be “differently-abled.”
A turning point for older Americans and people with a disability happened in the 1960s. Before then, people with disabilities were not even considered by policy makers. With the social justice movements of the sixties, consumers, advocates, and service professionals began to focus on service delivery for people with disabilities.
Independent Living Centers
Against this backdrop, Independent Living Centers came into being. Independent living has to do with self-determination for people with disabilities with the right and opportunity to pursue a course of action with the freedom to fail and to have the opportunity to be as self-sufficient as possible.
Forty years after the first Centers opened, Independent Living Centers remain an overlooked source of information, referrals, independent living skills training, peer counseling, and advocacy for people with disabilities (and their families and caregivers).
Independent Living Centers are typically non-residential, private, non-profit, consumer-controlled, community-based organizations that serve and advocate for people with all types of disabilities. The goal is to assist individuals with disabilities to achieve their maximum potential within their families and communities.
In the United States, there are nearly 500 Independent Living Centers and there are others in Canada, Europe and Africa. In the United States many are state supported.
The Older Americans Act and the Americans With Disabilities Act
The passing of two laws has improved the situation for older Americans with disabilities. But, not enough. The 1965 Older Americans Act (OAA) coupled with the 1990 Americans with Disabilities Act (ADA) have improved circumstances for many seniors with disabilities, but the landscape — fourteen years after ADA and forty years after the Older Americans Act – is far from idyllic.
The framework for the ADA was based on several findings, among these, “Some 43,000,000 Americans have one or more physical or mental disabilities, and this number is increasing as the population as a whole is growing older.”
Other findings contained in the ADA have striking and parallel relevance for older people: “People with disabilities, as a group, occupy an inferior status in our society as do older people.” Also, cited: “People with disabilities are a discrete and insular community who have been faced with restrictions, limitations, and unequal treatment.” Clearly any older adult with a disability faces at the very least, a double whammy.
Professional Geriatric Care Managers
As our population ages and falls prey to chronic diseases which cause disability and loss of daily function, there will be fewer family members (mostly children) to care for them. Families are now frequently spread out across the county, thus creating an issue when it comes to caring for an elderly parent. Often, the children work full time or have families of their own and are unable to commit to caring for an elderly, needy parent. In addition, family members may become overwhelmed with the responsibilities of caring for an elder or may not know what resources are available to assist the parent. Due to these issues, people are frequently turning to the “Professional Geriatric Care Manager” to oversee the care of the elderly person.
Professional Geriatric Care Managers (PGCMs) are health and human services specialists who help families care for older relatives, while encouraging as much independence as possible. The PGCM may be trained in any of a number of fields related to long-term care, including, but not limited to, nursing, gerontology, social work, or psychology, with a specialized focus on issues related to aging and elder care. The PGCM acts as a guide and advocate — identifying problems and offering solutions.
Dr. Jackson-Brown’s Story
From 1992 to 2003, I was the sole family caregiver for my father who had complex care needs as a result of prostate cancer. I was faced with a range of challenges in an unfriendly and largely unresponsive world. Professionals from traditional disciplines where ill-prepared to recommend other than conventional approaches to care which, for me, were unacceptable.
It was the early 90s when I learned about Geriatric Care Management from a local newspaper article. Fortunately, one of the first Geriatric Care Managers in the county practiced in my area. It was solely from her guidance, coaching, and support that gave me the foundation to successfully navigate the turbulent waters of his care.
My father was older than the parents of my peers as my parents had me late in life for that time. He lived throughout these years as a paraplegic as a result of the cancer. In the last five years of his life, he, at first, was an above-the-knee amputee and then later became a double above-the-knee amputee.
I was faced with a range of challenges in an unfriendly and largely unresponsive world. As a result, I borrowed resources and support from a variety of communities, including the spinal cord injury community. Also, helpful was the peer counseling and caregiver support that was available through the local Independent Living Center which gave both me and him the courage and support for him to live independently and to “age-in-place”.
Mentioned earlier, with the support and guidance of a Geriatric Care Manager – which at that time was a little-known specialty – and my own capacity to problem-solve and leverage resources, my father and I modeled a living and care arrangement that was unusual and creative. However, the journey was circuitous and back-and-forth — from hospital to rehabilitation hospital to nursing home to my home to his home.
This cycle repeated itself many times, until finally, some stability was achieved and he lived in his own residence for the last six years of his life.
Tips for Success
Now, as a Geriatric Care Manager and Certified Senior Advisor, there are many lessons that I learned from caregiving and managing the care of an older adult with a disability. While the lessons (and my examples) correspond to a person with a physical disability, several are applicable for other disabilities as well:
1. Be a relentless advocate. The law is on your side. I recall having to obtain a special dispensation to have a Para transit bus extend its pick-up point by only 50 yards so that my father could board. After struggling for months, I prevailed after many letters and phone calls.
2. Get into a support group and link-up with a network. The spinal cord injury community introduced me to individuals with spinal cord injury who, in turn gave me detailed information – not generally available at that time – for managing bowel and urinary incontinence. Plus, they gave me “permission” to be angry with my father when he was irresponsible in managing his own care.
3. Seek out care from a rehabilitation hospital. Too often, people are discharged to a sub-acute facility for rehab when in fact they would be better served at a rehabilitation hospital. Be aware of the difference.
4. Insist that durable medical equipment – such as scooters, canes, walkers, wheelchairs, seats, beds, etc., assistive technology and devices be appropriate to the person’s needs. Be sure that any “aid” is fitted to the individual’s capability, height, weight, and use. Avoid using “one-size- fits-all equipment.
5. Insist on an assessment and guidance by a specialist. For example, for a person with low-vision challenges, a general eye exam will not suffice. Get an assessment from a low vision specialist, a licensed Doctor of Optometry or Ophthalmology, who is skilled in the examination, treatment and management of patients with low vision and other visual disabilitites. Mobility training for people with low vision can usually be obtained from a Center for Independent Living.
6. Avoid patronizing stores, offices, places of worship, and other entities that are not ADA compliant or have made no effort to “welcome” people with disabilitites or to make provisions for accessibility beyond “a ramp.”
7. Familiarize yourself with the assistive technology that is available for a specific disability; for people with cross-disability, explore the resources and referrals for each disability.
8. Become knowledgeable about universal design and its principals to allow seniors with a
disability to age-in-place, safely.
9. Be sure to have all necessary estate documents in place, including a release that allows a caregiver to obtain and be given personal information.
10. Identify a reliable source for securing paid caregivers, companions, or personal care assistants. Know the difference between an agency and a registry and whether companion care, personal care assistance, or nursing care is needed. Many Independent Living Centers maintain a registry of “personal care assistants” with payment arrangements determined privately.
And most importantly, expect opposition and discrimination. In Westchester County, New York in 1992 as I was searching for housing for my father, a new residence for seniors opened. While he “appeared” to need lots of care and assistance, he, in fact, through training – for both of us – he was very independent, needed minimum assistance and was “enabled” at every turn.
However, because he was in a wheelchair, the new senior residence refused to lease to him. I took the matter to the Housing Authority; an investigation ensued and the residence was cited for discrimination.
Conclusion
Programs and services for seniors with disabilities and their caregivers are growing in an attempt to become ADA compliant and responsive to older adults. I have witnessed and experienced new technology and even new attitudes even in the three years since my father’s passing in 2003. In the 1990s, for example, there were few sources of adaptive clothing for people with physical limitations and even fewer choices for incontinence products and methods for managing incontinence. Now, traveling with a person in a wheelchair, isn’t the gargantuan task that it once was only five years ago.
However, I look forward to delivering service to older adults and seniors with a disability without having to “put up my dukes” to make a difference in their lives.
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*Pawlson, G. Chronic Illness: Implications of a new paradigm for health care. Journal of Quality Improvement, 194; 20:33-39.
