Remaining at Home
Getting Outside Help
Respite Services
Low-Income Housing for Seniors
Alternatives to Nursing Homes
Board and Care Facilities
Assisted Living Facilities
Continuing Care Retirement Communities (CCRCs)
Studies show that older Americans prefer to stay in their own homes if they possibly can. It is no surprise, then, that most care for the elderly is provided at home, whether by family or by hired help. While many consider in-home care preferable to institutional care, there are public benefits and legal considerations that come into play as well.
To begin with, family members shoulder most of the burden of caring for the elderly at home. Being the primary caretaker for someone who requires assistance with activities of daily living, such as walking, eating and toileting, can be a consuming and sometimes exhausting task. One important consideration when one family member bears the sole responsibility of caring for a parent or other older relative is the question of equity with other family members. For example, is the family member being fairly compensated for her work? If the older person is living with a child, does the parent contribute toward the home expenses? If the care is taking place in the elder's home, does the child have an ownership interest in the house?
For parents with only one child, such arrangements may not be so complicated, but if the parent has more than one child, it can be difficult to know what is fair. An arrangement that seems equitable today may not seem that way after a child has devoted, for example, five years to the care of the parent. And if a plan is set up that is fair for five years of care, what happens if the parent suddenly moves into a nursing home during the first year? With no planning for such eventualities, the care of an older person can foster resentment and guilt among family members. Fortunately, most elder law attorneys are skilled in helping families devise creative solutions to such problems.
At the same time, state and federal government officials are slowly recognizing that home care can be more cost-effective than institutional care. This means that, depending on the state, financial or other assistance may be available for those who choose to remain in their homes despite declining capabilities.
Public and private agencies offer a variety of home care services that may be available to you, including the following:
- Home health care, either part-time or 24-hour care
- Personal care and homemaking services, such as shopping, cooking and cleaning
- Services delivered to the home, such as meals programs, transportation and home repair
- Adult day care centers that offer more intensive services than senior centers. There are more than 2,000 such centers around the nation and they are usually affiliated with churches or non-profit community agencies. (See below for more information).
- Money management
- Respite services. These programs provide caretakers with a periodic break. A home care professional or aide substitutes for the caretaker for a specified period of time. (See below for more information).
Medicare and Medicaid provide some coverage of the medical portion of home health care. Although the coverage is often inadequate, when combined with other resources available to the older person and his or her family, it may be enough to keep a fragile older person at home for a longer period of time. For an explanation of the coverage of home health care available under Medicare, click here. Medicaid offers very little in the way of home care except in New York State, which provides home care to all Medicaid recipients who need it. Recognizing that home care can cost far less than nursing home care, a few other states -- notably Hawaii, Massachusetts, Oregon, and Wisconsin -- are now pioneering efforts to provide services to those who remain in their homes.
There are thousands of private home care agencies around the nation. About half of these are Medicare or Medicaid certified agencies, meaning that these two federal programs will reimburse for services provided by the agency if the services are covered. Such certification also means that the agency has met certain minimum federal standards regarding patient care and finances. Home care agencies can also gain accreditation from private accrediting organizations. The three major accrediting groups for home care agencies are the Community Health Accreditation Program; the Joint Commission on Accreditation of Healthcare Organizations; and the National Association for Home Care.
Non-medical services are also available to help older persons remain independent. The Older Americans Act funds more than 10,000 senior centers and gives grants to state and Area Agencies on Aging to provide services to seniors that include Meals-on-Wheels, transportation, respite care, housekeeping and personal care, money management, and shopping. Services are usually free but staffing may be limited.
To find Area Agencies on Aging programs across the country, visit the Eldercare Locator Web site at https://www.eldercare.gov or call the nationwide, toll-free Eldercare Locator at 1-800-677-1116. In many cases, these agencies may offer case management and coordination services as well.
The new profession of "private geriatric care manager" has evolved to help coordinate services for seniors. Private geriatric care managers usually have a background in either social work, nursing, or psychology and are experts in helping older persons and their families make arrangements for various kinds of long-term health care. These care managers evaluate an older person's needs, review the options available, and monitor care once it is being delivered. To find a geriatric care manager in your area, visit the Web site of the National Association of Professional Geriatric Care Managers at www.caremanager.org
Caring for a loved one with a long-term illness is a 24/7 job. Caregivers need occasional time away from their responsibilities to rejuvenate, pursue personal interests, or socialize. Respite services give caregivers that opportunity.
There are many different types of respite services:
- Round-the-clock. Assisted living facilities and nursing homes may provide overnight, weekend, and longer respite services for caregivers who need an extended period of time off. Not all assisted living facilities and nursing homes accept people for short-term stays, however, so contact your local facility.
- Adult day care. If a caregiver works, an adult day care facility can help. Adult day care facilities provide care and companionship outside of the home and give seniors the chance to interact with peers. The facility can provide social or therapeutic activities. Some day care facilities are especially designed for Alzheimer's patients.
- In-home care. If you don't want your loved one to have to leave your home, you can take advantage of one of the many in-home services that may be available. In-home care can involve a large range of services, including companionship services to help entertain your loved one, services to help the caregiver do housekeeping chores, personal care services, and skilled/medical care services. In addition, you can have someone come in to stay with your loved one while you work or for longer stays when you need to be out of town.
The cost of respite services varies from service to service. Medicare does not pay for these services, but Medicaid may pay for adult day care services. There may be other federal or state aid available. Contact your local Area Agency on Aging for more information.
To find respite services, go to https://www.respitelocator.org/ or contact your local Area Agency on Aging. If you are caring for an Alzheimer's patient, contact your local Alzheimers Association.
- Immigration status: Federal housing requires that at least one member of your household be a U.S. citizen or have a certain type of legal immigration status.
To apply, you need to request an application from each housing authority or program you want to apply to. For information on what housing is available in your state, go to https://www.hud.gov/groups/seniors.cfm.
Unfortunately, there are often more applicants than housing available. As a result, housing authorities and landlords keep applicants on waiting lists. These waiting lists can be quite long. Because of the wait, it is important to apply to as many different housing programs as you can, and to keep track of your applications and your place on the waiting lists. Also, if you move, be sure to notify the places you submitted applications.
Certain applicants may be able to get a preference or priority status on the waiting list. The particular preferences and priorities vary from program to program but common ones include:
- Local residents
- People facing domestic violence
- Working people (This preference must always include people who cannot work due to disability or age)
- People who are homeless or at risk
- People with disabilities
- Veterans
- Elderly or near-elderly
If you fit into a preference or a priority, you may be moved up the waiting list.
Once you reach the top of the waiting list, the housing authority or landlord will determine whether you are income eligible. Then they will check certain information, such as credit reports, criminal record information, and landlord references, to determine if you are likely to be a good tenant. Once that is completed, you can move in.
The reality is that it is sometimes impossible or too expensive for an elderly person in poor health to remain at home. Other seniors may simply wish to live with others rather than be isolated. Fortunately, over the last two decades there has been an explosion of supportive housing alternatives for seniors, and the options are no longer limited to an agonizing choice between staying at home or moving to a nursing home. If you (or a loved one) do not require round-the-clock skilled nursing care, one of these supportive housing alternatives may be just right.
Supportive housing options range from board and care homes to large institutional complexes. Supportive facilities provide food, shelter and personal assistance while encouraging independence and personal dignity. The services offered may include help with activities such as eating, dressing, preparing meals, shopping, as well as monitoring and other supervision.
The main alternatives are board and care facilities, assisted living facilities and continuing care retirement communities (CCRCs). But these broad categories encompass a huge range of options in terms of services and costs. Generally, the more you pay, the more services you get. There is a great disparity in quality as well, with facilities ranging from excellent to sub-standard. This means you need to research the options carefully before making a choice, and this section can help you in that process. But if you can find a high-quality facility, supportive housing can make a great deal of sense. It's reassuring to know that help is there to take care of tasks like cooking, cleaning and home maintenance.
These are group residences that can range in size from as few as two residents to more than 200. They may also be referred to as residential care facilities, homes for the aged, or community-based residential facilities. Such facilities provide room, board, and 24-hour supervision, as well as help with some of the five activities of daily living (eating, dressing, bathing, using a toilet, and transferring from one position to another) and the instrumental activities of daily living (ADLs) (preparing meals, walking outdoors, taking medications, shopping, housekeeping, using the telephone, and handling money).
Such facilities generally do not provide any medical services. These homes may be unlicensed, and even licensed homes may rarely be monitored by the state. Costs can range from $350 to $3,000 a month. For those with very limited incomes, Supplemental Security Income (SSI) may help pay the cost of these homes. Medicaid may also reimburse the monthly fee, depending on the state and the resident's Medicaid eligibility.
These facilities offer basically the same services as board and care homes, but in a more "upscale" and homelike environment. Housing is often in small apartments and there is generally more space, privacy and recreational options. A premium is placed on retaining as much independence in living as possible, and care is more individualized. Despite the emphasis on independence, supportive services are available 24 hours a day in order to provide different levels of help with activities of daily living. There also may be more medical supervision than is available in a board and care home, depending on the facility.
While costlier than board and care facilities, assisted living facilities nevertheless are often less expensive than a nursing home. Assisted living facility residents agree to pay a monthly rent, which can range from less than $2,000 to $6,000 a month. According to a 2011 MetLife survey, the average cost of an assisted living facility in the U.S. is $3,477 a month, or $41,724 a year. The highest average monthly cost was in Washington, DC, at $5,757 a month while the lowest was in Arkansas (except for Little Rock) at $2,156 a month. (For the full survey, click here.)
This rent may cover all services or there may be charges for services above the monthly fee on a per-use basis. Residents generally pay the cost of medical care from their own financial resources. Some costs may be reimbursed by an individual's health insurance program or long-term care insurance policy. Because assisted living facilities are usually less expensive than nursing homes, many state Medicaid programs now provide some type of funding for elderly residents who qualify for the Medicaid program.
However, assisted living facilities are an emerging industry and not all states regulate such centers to protect residents from substandard care or questionable business practices. The National Center on Assisted Living compiles an annual list of state regulations that includes contact information for licensing agencies. For details, click here.
To download (in PDF format) a Government Accountability Office report, "Assisted Living: Examples of State Efforts to Improve Consumer Protections," GAO-04-684, April 30, 2004, click here.
Whether assisted living facilities are regulated or unregulated in your state, asking specific questions can help you gauge the quality of a facility. For a checklist of questions to ask of assisted living facilities, click here.
In addition, visit the Web site of the Assisted Living Consumer Alliance (ALCA), a national non-profit organization advocating for stronger consumer protections for assisted living residents. The group's Web site provides news and information for both consumers and professionals, including consumer advice and summaries of each state's assisted living rules.
For names of assisted living facilities near you, the following are several helpful sites: Senior Housing Net, SeniorLiving.net and Assisted SeniorLiving.
Fighting an assisted living discharge
When you move into an assisted living complex, you expect to spend the rest of your days there. However, many assisted living residents suddenly find themselves facing eviction from their homes when their health deteriorates. Although there is no "one size fits all" way to handle a discharge from a facility, there are some things you can try.
In general, assisted living facilities have a lot of discretion to determine when to discharge a resident. According to the National Senior Citizens Law Center, 39 states allow a facility to discharge a patient if the facility can no longer meet the patient's needs. The other 11 states (Connecticut, Georgia, Kentucky, Maryland, Massachusetts, Minnesota, Nebraska, New Hampshire, New Jersey, North Dakota, and Rhode Island) are either silent about discharge or provide other reasons for discharge, such as the resident requires services that exceed the facility's license or the resident violating the admission agreement.
Almost all states require facilities to give residents notice of discharge, but the rules vary widely from state to state. In addition, laws regulating assisted living facilities are vague. While this gives facilities a lot of discretion, you can also use it to your advantage.
If you are facing a discharge that you don't believe is fair, you should stay put, if possible. In a few states (Massachusetts, New York, and Iowa), assisted living discharge is considered an eviction and is handled under landlord-tenant law. That means the facility is required to go to court before it can evict you, and you will get a chance to argue against the eviction. In other states, whether an assisted living discharge is an eviction is an open question. Because the rules are vague, the facility may not know what to do if you do not leave, and by staying you can change the balance of power. The facility would likely be forced to get a court order to move you out, and you may be able to argue that the discharge is unfair.
Some states may have procedures by which you can object to the discharge. The procedures vary from state to state. It could be that you meet with a staff member or an administrator who made the discharge decision or file a complaint with the state licensing board. In a few states (Maine, Ohio, Oklahoma, Oregon, Vermont, Wisconsin), you have the right to an administrative hearing.
If all else fails, you may be able to use anti-discrimination laws to challenge the discharge. The Americans with Disabilities Act, the Fair Housing Amendments Act of 1988, and Section 504 of the Rehabilitation Act all protect tenants against discrimination on the basis of a physical or mental disability. Landlords are required to reasonably accommodate a disability unless it would cause an undue hardship. So, for example, if the reason you are being discharged is because you are now in a wheelchair and your assisted living apartment does not have ramps, you may be able to argue that the landlord is required to install the ramps as a reasonable accommodation. Using anti-discrimination law is very difficult and would require the assistance of a lawyer.
Continuing Care Retirement Communities (CCRCs)
CCRCs offer the entire residential continuum--from independent housing to assisted living to round-the-clock nursing services--under one "roof". Residents pay an entry fee and an adjustable monthly rent in return for the guarantee of care for the rest of their life. Because CCRCs maintain an assortment of on-site medical and social services and facilities, residents can enter the community while still relatively healthy and then move on to more intensive care as it becomes necessary. Nursing care is often located within the CCRC or at a related facility nearby. In addition to health care services, CCRCs also typically provide meals, housekeeping, maintenance, transportation, social activities, and security. Communities range in size from about 100 to 500 living units
CCRCs are so diverse in their offerings and personality that the saying in the industry is that "if you've seen one CCRC, you've seen one CCRC." The physical plants of CCRCs run the gamut from urban high-rises to garden apartments, cottages cluster homes, or single-family homes. Some CCRCs provide units that are designed for people with special medical conditions, such as Alzheimer's disease.
Most importantly, CCRCs guarantee a life-long place to live. Assisted living and even skilled nursing facilities make no such guarantees, and in fact they may ask you to leave if they believe they cannot provide the care you require. However, virtually no CCRC will guarantee an individual entry into the skilled nursing facility that is a part of the CCRC. If all the nursing units are filled (by either other residents or non-residents), the CCRC may place the ailing resident in another nursing home in the community. This can come as a rude shock to most elders, who believe precisely the opposite.
The downside of CCRCs is the cost, which can be greater than what people with low or moderate income and assets can afford. Prices depend on the amount of care provided, the type of contract, and the unit's size and geographic location. Entry fees run from $20,000 to more than $500,000, with monthly charges ranging from $200 to $3,200. Often seniors use the proceeds from the sale of their home to make the initial investment in the retirement community. However, the Internal Revenue Service does not allow home sellers to roll over their capital gains into the purchase of a CCRC unit. Thus, a tax may be due on gains from the sale of a home even though a CCRC unit is being purchased with the proceeds.
You may be entitled to a refund of your entry fee on a declining scale if the refund is requested within a short time after moving in. Generally a refund will no longer be available after a specified period of residency. Some CCRCs give residents the option of paying a higher entry fee, which remains refundable. Part of the entry fee will be refunded either to the resident when the resident moves or to the resident's estate once the resident dies.
CCRC fee arrangements
The number of payment options is growing. Although the entry and monthly fee arrangement is the most common, some CCRCs offer rental or equity arrangements. Under a rental arrangement, residents pay only a monthly fee, which typically covers housing and designated services (sometimes including health care services). Under equity arrangements, residents purchase their residence in the same way they would purchase a cooperative apartment or condominium, although the resale of the unit is usually limited to those who meet the community's eligibility criteria. Residents then may purchase service and health care packages for an additional fee.
CCRCs usually have the following three basic fee schedules:
- Extensive contracts, which include unlimited long-term nursing care at little or no increase in the monthly fee. This arrangement requires residents to pay a higher fee initially.
- Modified contracts, which include a specified duration of long-term nursing care, beyond which fees rise as care increases.
- Fee-for-service contracts, in which residents pay a reduced monthly fee but pay full daily rates for long-term nursing care.
Contracts have gotten more confusing over the years, with many CCRCs offering different variations within each fee schedule. For example, a CCRC might offer two different extensive contracts and one modified contract, with different levels of refundability for each. At www.ccrcdata.org, you can find a directory of CCRCs and sort them by location, price, long-term health coverage, and refund plans.
As with assisted living facilities, the regulation of CCRCs is spotty. These institutions are strictly regulated in some states, while not at all in others, and there is no overarching federal agency that watchdogs retirement communities. A private non-profit organization, the Continuing Care Accreditation Commission (CCAC), accredits CCRCs. The CCAC accreditation process is voluntary. Its high cost and the length of time it takes to complete means that accreditation is a good indicator of a facility's quality. The CCAC's Web site lists all CCRCs that have been accredited. Go to https://www.carf.org/Consumer.aspx?Content=CCACSearch
Nevertheless, a CCRC's lack of accreditation should not necessarily be taken as a bad sign. One of the most important considerations is the financial soundness of the facility. In selecting a community, experts recommend choosing a "mature" facility, one that has been in business a number of years. In addition, it is important to know who the CCRC's sponsor is. The Society of Friends (Quakers), for example, has been in the CCRC business for quite some time and its facilities are reputed to be excellent. LeadingAge (formerly the American Association of Homes and Services for the Aging) is the national ssociation for the non-profit CCRCs (most CCRCs are operated by non-profit groups). The group's web site includes tips on selecting a CCRC. Go to https://www.leadingage.org/.
CCRC entry requirements
Most CCRCs require that a resident be in good health, be able to live independently when entering the facility, and be within minimum and maximum age limits. As a prerequisite to admission, facilities may also require both Medicare Part A and Part B, and perhaps Medigap coverage as well. A few are now even requiring long-term care coverage as a way of keeping fees down. Some CCRCs are affiliated with a specific religious, ethnic or fraternal order and membership in these groups may be a requirement. Of course, applicants will have to demonstrate that they have the means to meet the required fees. You may be placed on a waiting list, since CCRCs are often sought after.
CCRC residents usually fund their care out of their own pockets. However, Medicare, and at times Medicaid, can be used to pay for certain services, and most CCRCs accept either Medicare or Medicaid. Although Medicare does not generally cover long-term nursing care, it often covers specific services that a CCRC resident might receive, such as physician services and hospitalization. Because the financial requirements for residence are fairly strict and the costs are relatively high, very few CCRC residents are eligible for Medicaid.
How to evaluate a facility and contract
Deciding on a CCRC is a once-in-a-lifetime choice, and it is a decision that should be made carefully. Many communities allow prospective residents to experience life at the facility. Each community has an agreement or contract that lays out the services provided. You should make sure you understand the contract before signing, and you would be well advised to seek legal or financial counsel before entering into any agreement.
For a checklist of questions to ask of CCRCs, click here.
For an article on the growing options offered by CCRCs from the New York Times and reprinted in the International Herald Tribune, click here.
National Center on Assisted Living's Annual Reference List
The National Center on Assisted Living compiles an annual list of state regulations that includes contact information for licensing agencies. While helpful for beginning research, it does not include citations or listings of resident rights. To view the 2011 list, click here.
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