"Growing old isn't for sissies” is often quoted by folks who are facing chronic illness or end-of-life issues. Aging is perceived as an inevitable decline of mental faculties and physical abilities, which are less dependent upon chronological age than genetics and general health. Contrary to the common view of aging, many people are still active into their 80's and 90's. Some people, however, become frail and dependent, need extra care, and are no longer able to live independently regardless of their age. Most of these people traditionally have ended up in nursing homes. The current federal policy is to shift from institutional care to provide more funding for in-home care with financial support to family members. Pouring more federal money into the existing system of institutional care or enacting more regulations of these facilities isn't the answer to the seemingly intractable problems associated with the care of the elderly. Care of the chronically ill and end-of-life care are equally important as finding a cure or prevention of disease because they account for a higher share of the expenses for both Medicare and Medicaid. Federal regulations and funding are passed through from the U.S. Department of Health & Human Services to the states, many of which operate with different organizational systems so there is no uniformity in organization. Fee-for-service rates vary by region, and qualifications and services vary by state.
The federal bureaucracy dealing with the elderly started with the Older Americans Act of 1965, which created Medicare, Medicaid, and the Administration on Aging (A0A) within the U.S. Department of Health & Human Services. Although it was formerly called the Healthcare Financing Administration, the Center for Medicare & Medicaid Services (CMS) now handles the financing of both programs although the processing of claims is contracted out to regional private insurers. Eldercare has evolved into a jigsaw puzzle that got put together in different ways in each community. Medicare is a standardized national insurance program. Most of the Medicaid federal dollars flow through various state agencies (it varies by state) that set standards for qualifying and coverage. Medicaid is becoming increasingly a burden on state budgets that have to match federal funds. A huge bureaucracy has developed not only at the federal but also the state and local level often with little cooperation among various agencies.
Finding the way to receive eldercare services is a complex process, and many people hire eldercare consultants to help them wind their way through all of the confusing options and steps involved in finding appropriate care and services, including the costs of each option. I recently helped the family member of an elderly friend thread through a maze of hospitalizations, rehabilitation, and nursing home care during the final two months of his life. "The system" focused on technology, insurance requirements, and standard medical "protocols" rather than providing humane care only to run up a $400,000+ bill for Medicare. Herman faced serious health issues when he was admitted to the hospital, and with no family members nearby I served as his advocate in the hospital and provided support and communications with his niece who lived 150 miles away in another city. Although his niece worked in a hospital, she was unfamiliar with the bureaucracy of how decisions are made under the rigid guidelines of protocols (medical procedures) and what options patients may have in directing their own care. The decision-making process became critical when it came time for his discharge to a nursing home, and the priority of the hospital staff was simply to get him out of there as quickly as possible because of the pressures of the insurance companies that limit payment based upon a complex schedule of fees. Most family members encounter the same problems of dealing with the needs of their care receivers only when they are at this crisis stage --- when it's too late to learn all of the complexities of who does what, what insurance (including Medicare and Medicaid) will or not pay for, and what choices of services or facilities are available.
Like most people who are caring for the elderly, his niece was faced with making a choice of a nursing home, or skilled care facilities, as they are called. The nursing home industry is one of the most heavily regulated businesses but also one of the most inefficient both in terms of quality of care and in effective business administration. There is a mixture of for profit and non-profit corporations, but most are owned or operated by large corporations. The 2009 report by the AARP Public Policy Institute Across the States 2009: Profiles of Long-Term Care and Independent Living contains thousands of numbers. The statistics reveal an increasing demand for long-term services and supports, more commonly known as long-term care, in the United States and the strategies for delivering such services and paying for them across all of the states. The report focuses on comparing data among states, because much of the policymaking and innovation in long-term care is administered by the states. Given the growing older population, the rising demand for long-term care and the increasing cost of services, consistent policies across all the states are critical in order to understand how to improve the lives of those with long-term care needs. This report continues with numerous statistics and tables to detail all of the socio-economic and geographic breakdowns with breakouts on Medicare and Medicaid funding.
An Administration on Aging report focuses more on demographic data: Older Americans Profile, published in 2008 provides a statistical breakdown based on age, geography, type of care, federal funding, and life expectancy. So what do all of these statistics mean? The U.S. population is rapidly aging and the cost of providing care is growing even more rapidly. Whereas Medicare covers most medical expenses for the elderly, it does not provide coverage for long-term care. Long-term care insurance is still somewhat of a novelty, and policies in the past decade have been issued only for a small minority of the population. Many are forced to spend down their assets, savings, and resources and to go on Medicaid that provides coverage for the indigent regardless of age when they are required to become institutionalized.
The report of a Presidential Commission Long-Term Care in America: An Introduction made these recommendations:
"Long-term care is provided by many Americans in a variety of settings that include traditional family homes, senior housing with services, assisted living, and nursing homes. The nursing home is no longer the usual and customary setting for long-term care in many communities. Long-term care options will likely continue to diversify and
Increase as new generations of long-term care users become more sophisticated and markets respond to their needs and preferences. Despite increasing options, the current system is not keeping pace with this change. It continues to rely on spouses and children to provide most of the care. Individuals who need additional care often face high costs with no private insurance to finance these costs. Medicaid is the safety net for poor people or those whose private financial resources are exhausted by the costs of care, however, its coverage of home care services is limited and uneven. The choices we make today to address these problems will make a difference when long-term care demand begins to increase substantially at the quarter-century mark. Without change, several factors will compound to increase reliance on publicly financed long-term care: an increase in the population over age 85, constrained financing options for long-term care, and a reduction in availability of informal caregivers. New financing and delivery options and strategies are necessary to address existing problems and build a sustainable system for the future. Meeting these challenges is fundamental to the future of our entitlement programs, and our national economic competitiveness. "
The public perception of nursing homes is that of being the last resort where abuse and neglect rein, and the smell, depression, and boredom of the patients becomes dehabilitating. Unfortunately, in all too many cases this is the rule, but there are exceptions. My friend Herman compared his nursing home (one of the better ones) to a prison where people are sent to be incarcerated or to die. In the past decade several innovative approaches have been tried in an effort to change nursing homes into less of an institutional setting with more emphasis on "person-centered care" rather than the current medical model similar to a hospital which regiments the residents into a structured routine with little opportunity for personal choice. One of the problems is that the structure of all these federal and state regulations has made innovations more difficult because they don't meet the strict requirements.
Some of these new models for nursing homes include: The Eden Alternative, the Pioneer Network, and the Greenhouse Project. These innovations and others are being promoted by the North Carolina Coalition on Long Term Care Enhancements (NCCLTCE) and comparable statewide organizations that provide grants to facilities and conduct educational programs. The Eden Alternative is a non-profit organization founded by Dr. William Thomas, a geriatrician, in 1991 to de-institutionalize the culture and environment of nursing homes and now includes 15,000 associates and 300 registered homes. The Pioneer Network, a not-for-profit organization based in Rochester, NY, is a center for all stakeholders in the field of aging and long term care whose focus is on providing innovations in home and community care for elders. It hosts an annual conference for associates. The Greenhouse model® is an architectural design that creates a small intentional community for a group of elders and staff that is a radical departure from traditional skilled nursing homes and assisted living facilities. The Green House model® alters traditional facility size, interior design, and staffing patterns.
Within the past decade other housing options have developed as alternatives to nursing homes. "Assisted living" is a state-regulated residential long-term care option for individuals who do not require skilled care but are unable to live on their own without help. The term is confusing because it is used to describe a wide range of facilities ranging from "rest homes" to "country clubs for the elderly." State regulations, which vary, often require assisted living facilities to offer or coordinate personal and supportive services. Assisted living has grown rapidly over the past decade with about 36,451 facilities with 937,631 beds according to a HHS 2005 report. They may range from small (less than 6 residents) group homes to enormous facilities with hundreds of apartments and luxury accommodations. One of the reasons these facilities have grown so rapidly is the fact that they are not highly regulated and focus more on amenities than in providing care. They do not qualify, however, for any federal funding or long-term care insurance for food and housing although some medical services may qualify.
Affluent seniors, market changes in housing, and technology have helped create unregulated senior housing options such as senior independent living facilities and continuing care communities. These are not primarily healthcare facilities. Independent living is a term that generally describes an easy-to-maintain private apartment or house within a grouping or community that is exclusive to seniors that may or may not also provide meals. Continuing Care Retirement Communities provide independent living facilities contained on one campus that also includes assisted living and skilled nursing care. According to the American Association of Homes and Services for the Aging (AAHSA), there are 2,240 CCRCs in the US with about 725,000 residents. The financing of these facilities varies and may include a purchase or initial investment or may simply include monthly rental fees. Most offer houses as well as apartments, and the initial cost can range from $300,000 to $500,000+ depending upon the locale and the facility. The monthly fees range from $2,500 - $6,000 depending upon the level of care. The initial investment may revert to the estate or may expire upon death depending upon the covenants of the facility. The contract specifies whether the property is held in trust or is sold outright, and the agreements vary with each facility.
Some people with long-term care needs who live at home or with family caregivers use services from one of the 3,500 adult day centers. These centers provide respite care, social activities, and healthcare services for adults with physical disabilities or cognitive impairments. Most of these facilities are operated as an adjunct to some other social services agencies such as a church or county social services department and do not qualify for Medicare or Medicaid although they may receive some state funding support. These are not residential facilities and operate in a manner to childcare facilities only for limited hours during the working day.
My experiences as a caregiver of my sister in both a assisted living facility and later a nursing home revealed that it cost $4,500 per month for just for housing and food (medication was extra) and included limited personal care because there was not adequate staff. I resented the fact that Mary Louise slowly played out the remaining days of her life to the benefit of large corporations which specified that she was housed in their facilities at "her own risk," that is they assumed no responsibilities for loss of personal property or abuse. For much of her life she never received that much money as an annual salary. For the two years prior to going into a nursing home, she had used health care aides (certified nursing assistants or CNA's) in her home and in the assisted living facilities. The CNA's certification requires less training than that of a beautician. Part of the cost of these aides was paid by insurance. She had long-term home health care insurance that provided $80 a day (less than the cost of one shift) reimbursement for the cost of having a CNA to attend to her personal care needs. She had taken out the policy shortly after the death of our mother in 1991 as a preventive measure to avoid going into a nursing home at a time when few insurers offered long-term health care policies. Unfortunately, it didn't have an escalation clause to keep up with rising costs and did not provide nursing home coverage.
My sister was fortunate to have health care insurance for medical, hospitalization, and prescription drug coverage as part of her federal and state retirement benefits in addition to the benefits provided by Medicare. She was able to cover her expenses and did not have to go on Medicaid. Most of her contemporaries did not enjoy such benefits. Even though she had good insurance coverage, the administrative procedures for filing claims and providing reimbursements, however, were a nightmare not only for the providers but also for the family, who were deluged with a bewildering array of statements, claim forms, summaries, and documents of rules and regulations as to what and what was not covered in each situation. But cost and administrative efficiency are only two parts of the triangle. Trained and motivated staff is equally important.
Attracting and keeping people who have the highest ethics and a genuine concern for the care of their residents must start with the training of both professional and auxiliary medical personnel and continue with their daily supervision and rates of compensation. We won't achieve quality eldercare as long as these facilities pay minimum wage and provide little or no training. Changes in management philosophy, facility design, better federal funding, and innovations in technology may improve over existing facilities but won't change the culture of care. The incentives to improve long term care for the elderly have to start from "the bottom up" on the front line of direct personal care.
In addition to the residential facilities, there are too few adult day care facilities (previously cited), and they need to be expanded. Many employers provide child day care services with on-site facilities, and other organizations offer local child day care services for a fee. Comparable services for the frail and elderly are very limited, and so most care is provided in the home by the family.
We've achieved a lot in public awareness of diseases affecting the elderly such as Alzheimer's, but we've still have a big gap of public awareness of the services and options that are available for long term care, the cost, and the need to make plans and preparations before they reach the crisis stage. The landscape of long-term care is changing. The current situation is incredibly complex and hard to understand, but the fact is that you (or someone you know) will be likely to need it in the future. The time to plan for it is now.