We all know the stories. One is consigned to a “nursing home,” which were satirically called “God’s waiting room,” and one lives among decrepit and desperate elderly, slowly deteriorating until a welcome death arrives. Nursing homes were considered by many as worse than death.
That stereotype was not really accurate thirty years ago when such types of facilities were far more prevalent and is usually grossly inaccurate today. Assisted Living Facilities have blossomed with excellent and vibrant programs to engage the elderly and afford them not only excellent medical care but also provide the type of social interaction that makes the final years of life far more rewarding. As one client once told the writer, to compare an Assisted Living Facility of today to the old views of nursing homes is to compare the insane asylums of 1750 to psychiatric treatment of today.
Stereotypes die hard. However, more and more people, facing the daunting prospect of maintaining a family home far too large for themselves, with children and grandchildren often living hundreds or thousands of miles away, now confront a situation quite different than the one facing their own parents. One can locate excellent places to live which will provide adequate medical care for the rest of your life and which are not the horrible places previously imagined.
They are expensive. More are needed. And with more people living longer and with the first of the Baby Boom generation reaching retirement age, it is hardly surprising that the number of people requiring some sort of long-term nursing care is growing. According to the American Association of Homes and Services for the Aging (AAHSA), people who reach the age of 65 have a 40 percent likelihood of entering a nursing home; by 2020, approximately 12 million older Americans will need long-term care.
The type of care available today fills a variety of needs ranging from traditional nursing care for the infirm or incapacitated, to assisted living for people who are still somewhat independent, adult day care for those who need supervision when the family is not available, and home health care for those who want or need to remain in their own homes. Almost always people wish to live at home as long as they can. The home is comfort and security. Often if injury forces them to move to another living situation these people are surprised at how pleasant the alternative to home can be.
Some History of Nursing Homes:
For most of human history, multi generations lived in the family home, the elderly usually owning the home, and this is the typical situation worldwide even today. In such communities, care of the elderly was simply an automatic obligation of the younger generation and since all lived and worked near the single home, this was not an undue burden.
As the Industrial Revolution brought more people to cities, families spread out and often people had no local extended family to fall back upon when they were in need. The result was a growing number of single and widowed people who had no one to take care of them in their old age. The first homes for the elderly were established by churches and women’s groups, catering to widows and single women who had limited resources. Homes such as the Indigent Widows’ and Single Women’s Society in Philadelphia and the Home for Aged Women in Boston were a far better option than an almshouse. These early homes were not open to all. Many of them required entrance fees, and some asked for certificates of good character. Requirements like these shut out the neediest, who were still relegated to the almshouse.
By the beginning of the twentieth century, sensibilities about caring for the poor and incapacitated had begun to change. Specialized facilities were built for children, the mentally ill, and younger infirm individuals. But little was done for the elderly, and they merely became a larger percentage of the almshouse population. In 1880, one third of the residents of almshouses in the United States were elderly; by 1923, two thirds were elderly.
It was not until the 1930s that things began to change for older people in need. The Social Security Act of 1935, part of President Franklin D. Roosevelt’s New Deal, provided monthly payments to those over the age of 65. Although the payments were relatively small, they were a critical first step. Some older people were able to leave the almshouses and live on their own. Others were able to enter private facilities.
There was an unforeseen downside. Private facilities were unregulated, which meant that many were poorly run—dirty, overcrowded, unresponsive to residents’ needs. Public facilities were at least regulated, but part of the Social Security legislation mandated that recipients were not eligible to live in them; only the truly indigent could stay in public homes.
By the 1950s, Congress realized that the situation required reform. The Social Security Act was amended so that recipients could be eligible for public accommodations. The Medical Facilities Survey and Construction Act of 1954 mandated the construction of public facilities for the elderly.
It was the creation of Medicare and Medicaid in 1965 that provided regulation for nursing homes. Congress set the first set of standards for nursing homes in 1967 and differentiated between “skilled nursing facilities” and “intermediate care facilities.” (Skilled nursing facilities provide nursing and rehabilitation services; intermediate care facilities provide care to people who do not need immediate nursing care.) Congress periodically updated the standards, notably in 1987 as part of the Omnibus Budget Reconciliation Act (OBRA) and again as part of the 1990 OBRA.
While most states have regulations that apply to various types of elderly care facilities, the Federal law applies to every state. The 1987 OBRA standards require that skilled nursing facilities and intermediate care facilities provide a level of care that will allow patients “to attain or maintain the highest practicable physical, mental, and psychosocial well-being.” Among the specifics:
- Facilities must allow patients (or their proxies) to make their own choices in activities, schedules, and health care decisions.
- Facilities must have around-the-clock licensed practical nurse care and at least one registered on duty at least eight hours every day. Nurse’s aides are required to receive specialized training.
- State agencies must create, monitor, and enforce both state and federal standards, in part through the establishment of investigatory units and ombudsman units.
The Patient Self Determination Act of 1990, part of OBRA 90, governs long-term facilities that participate in Medicare or Medicaid:
- Facilities must provide patients with information in writing that outlines their rights to participate in medical care decisions (including the right to accept or refuse treatment).
- Facilities must provide written statements outlining their policies.
- Patients have a right to issue advance directives (Living Wills) and facilities must document this in their records.
- Facilities must comply with state laws on advance directives (Living Wills) and cannot discriminate against patients who have or have not issued them.
- Facilities must provide education for staff and the general community on advance directive issues.
With some 17,000 nursing homes serving 1.6 million individuals, it is expected that standards will vary, even among homes ostensibly adhering to the same standards. The best protection an elderly person living in house can have is a family and friends who visit and inquire.
Despite the improvements, in the average nursing home, abuse still exists. Homes that are overcrowded, or homes with staff shortages or minimally trained staff, are susceptible, but it would be wrong to say that any specific condition makes abuse more likely. Under no circumstances is abuse excusable or acceptable in any way.
A recurring danger of nursing home abuse is that its victims are often either too frightened or too disoriented to report it, or even to tell friends or family. Often it is up to the family to make sufficient inquiry and be sufficiently alert to protect a loved one. Those with family members in a nursing home should be aware of what to look for when trying to determine whether abuse exists:
- The patient appears fearful or agitated, depressed or withdrawn.
- The patient is isolated with no justification.
- The staff is rude or makes humiliating or derogatory comments to patients.
- Patients are making complaints.
- Patients’ rooms are not kept clean by staff.
- Common areas are unsanitary.
- Patients appear unkempt or dirty. When complaints are made as to such condition, excuses are presented but the same condition is again seen on following occasions.
- Patients have bed sores or other untreated medical conditions.
- Patients have unexplained wounds, cuts, scrapes, sprains, or broken bones.
- Patients experience sudden unexplained weight loss.
- Patients are restrained without explanation as to why.
- Patients appear drugged and sleeping most of the time.
- Patient’s personal property is missing.
- Money is missing from patient’s accounts.
- Staff restricts or refuses visitors.
- Patient makes sudden changes in a will or other financial documents.
Before immediately assuming abuse, you should be aware that patients do fall down in such locations and elderly often easily bruise even if they only bump their hand against a wall. A single instance of a bruise or scrape does not demonstrate abuse. However, if repeated examples occur, then either abuse or negligence in the care of the patient may be indicated and action should be taken.
If you find abuse in a nursing home, you should report it at once. The U.S. Administration on Aging has a National Center on Elder Abuse web site (www.elderabusecenter.org) that links to individual state agencies. You can also call the Elder Care Locator at 1-800-677-1116. In an extreme emergency (if a patient’s life is in danger, for example), dialing 911 to obtain local police help may be the best idea. Remember, elder abuse may be a crime. The reader should read our article Elder Abuse in California-the Basic Law.
The cost of residency in a full time assisted living facility can be substantial. Some high end facilities even require transfer of substantial assets from the applicant upon that applicant’s death while others charge monthly fees that can be in the many thousands of dollars. Most are still less expensive than full time nursing care in the family home.
Many people cannot easily afford the cost for nursing home care; the specialized round-the-clock full-service costs can become substantial quickly. People who have financial assets can pay on their own, but those assets get used up rapidly. For those who have limited assets (such as a small pension), there are a number of payment options.
Medicaid pays the expenses of nearly two thirds of all nursing home residents. Note that this program has a means test and is unavailable to most of the elderly with even middle class means. It is distributed jointly by federal and state agencies. Each state has a State Health Insurance Assistance Program (SHIP) that determines Medicaid payments. You can reach your state’s SHIP by visiting the Medicare web site (www.medicare.gov). Medicare does not usually pay much toward nursing care; it functions as health insurance for those over 65, but not as long-term insurance. Check www.medicare.gov or call 1-800-MEDICARE to get clarification.
Medicaid does not cover assisted living or continuing care retirement communities. However, twenty two states do offer assistance for these services under a program called Program of All-Inclusive Care for the Elderly (PACE). An individual must be at least 55 years old and be screened by doctors and other medical professionals to determine whether such care is available. For a list of PACE organizations state-by-state, visit the web site www.cms.hhs.gov/pace/pacesite.asp.
Private health insurance may cover some long-term care, but often is limited. Managed care plans are useful only if the nursing home in question is covered by the plan. An option worth exploring is long-term care insurance. The costs vary, but the national Association of Insurance Commissioners (www.naic.org) offers information on long-term care including a free Shopper’s Guide.
Alternatives to the Nursing Home or Assisted Living:
Although many good nursing homes provide comprehensive care in a comfortable setting, a skilled nursing facility may not be the right choice. Indeed, most people do not want to leave the family home and fear the concept of “institutional” living. Remembering how their parents or grandparents may have been treated in nursing homes of the 1960’s, they may fear the same future for themselves. It is important, both for the patient and the patient’s family, to explore other options.
For those with adequate funds, private nurses, cooks, housekeepers, and drivers are not difficult to obtain. It is not unusual in a major city to locate people who will provide such care but the costs, especially if twenty four hour a day care is needed, can be in excess of ten thousand dollars a month. Since most elderly people live on fixed incomes and have limited resources, this level of care is often provided by family members or not at all. For these people, alternatives to nursing home care, if covered by insurance or Medicare, may be less expensive than long-term care in a skilled nursing facility.
Home health care may be a better option, particularly for elderly people who are in reasonable health but who need some assistance. A home health care worker can assist the patient with everything from shopping for groceries to physical therapy to bathing. For patients who are in reasonable health but for whom living at home is impractical (even with home health aides), assisted living facilities or continuing care retirement communities (CCRCs) may provide a good alternative. Some of these facilities are run much like hotels; residents live in small apartments and are independent, but meals and housekeeping services are provided. While best-suited to people who are still independent, they can also accommodate people suffering from conditions such as early stage Alzheimer’s disease.
Adult day care services exist in most cities and can be invaluable, giving family care providers some relief from the constant needs of an elderly parent or grandparent. They are often useful for those caring for elderly relatives who cannot be left alone during the day, (for example, Alzheimer’s disease patients). The typical adult day care facility works much like a child day care center in that the participants are dropped off and kept occupied during the day with a variety of activities. Along with those activities, the participants are fed and also given the opportunity to socialize with others. Adult day care provides caregivers (usually adult children) an opportunity to continue working or taking care of other matters during the day while being able to watch their loved one at home overnight.
Some elderly individuals may benefit simply from a medical transportation program, which provides door-to-door transportation to doctor’s appointments and outpatient treatment, for example. This is helpful for people who can take care of their basic needs but who no longer drive.
Conclusion and Resources:
With the population of the United States becoming increasingly elderly and medical care allowing that portion of the population to continue to expand, it is clear that the voting power of that portion of the population will continue to expand as well. Laws protecting the elderly will be more strictly enforced and facilities that can assist them are likely to expand in number and services provided. Life expectancies continue to increase and it will be common for people to survive into the mid eighties and early nineties within a decade or two. Both for yourself and for your loved ones, it is increasingly essential to plan for the eventuality of needing this type of care and to budget resources accordingly. There is no reason that the final decades of life need be grim or limited. Advance planning, careful review of available resources, good tax, legal and medical advice and, above all, self education will allow one to maximize the possibilities that exist.
The following resources are good additional steps to learn more:
Centers for Medicare and Medicaid Services (CMS)
7500 Security Boulevard
Baltimore, MD 21244 USA
Phone: (877) 267-2323
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895 USA
Phone: (301) 942-6430
Fax: (301) 942-2302
U.S. Administration on Aging
One Massachusetts Avenue
Washington, DC 20201 USA
Phone: (202) 619-0724
Fax: (202) 357-3555