University of California, Riverside

Human Resources



Elder Care


Eldercare

The American family is undergoing historic changes. Because of an unprecedented demographic shift, we are changing from a young to an old society. This trend has been called the "age wave," and it is forcing critical changes in the way we live and work, and in how we care for those we love. One of the most dramatic changes is in the number of people who are responsible for elder care. A study by the American Society on Aging estimates that approximately 25 million Americans are now caring for a parent or older loved one.

Though caring for elders is the most common form of adult dependent care, many people are also caring for other adults who are acutely chronically ill or disabled. Though most of the information in this section also applies to caring for non-elder adults, the word "elder" will be used to designate the care recipient.

In addition to the informational links provided below, the California Care Network is another resource designed to help you find state-licensed elder care services and facilities. These additional sites will introduce you to the primary areas of elder/adult dependent care and provide resources and information to help you plan the best strategies for your family. See Elder Care Resources for a comprehensive listing of all elder care resources that are available.

Where to Begin

When elder care issues arise, you need to act as early as you can. You need to know what questions to ask, what kind of help is available and what is most appropriate. (For example, your elder may not need to go into a nursing home; all that may be required is to safety-proof his/her own home, or bring in someone to do household chores, for a fraction of the cost.)

How do you know when to step in? In a medical crisis, it's obvious, but if you're observant, sometimes an elder will send signals that intervention is needed before something more serious happens. For example, your elder's house may not be as clean or tidy as it was. Bills may go unpaid. The refrigerator may be full of outdated foods and the pantry full of weevils. Personal grooming - clean clothes and body - may have deteriorated. Your loved one may also have had a significant change in weight or eating habits. Changes in your elder's attitude or behavior (for instance, isolation, depression, memory loss) are key warning signs, especially if there have been recent losses - of friends, or in "activities of daily living," such as bathing, eating, cooking, or mobility.

Within the community, the single best place to begin is your county's Area Agency on Aging (AAA). Sometimes this office is called the Council or Commission on Aging or Elder Affairs. This federally-funded program, known as the National Network on Aging, offers free or low-cost services through public and private agencies. The wide range of services includes domestic help, home health care, transportation, information and referral, adult day care, and legal advice. The AAA's purpose is to keep elders in their homes and out of institutions, for as long as possible. You may call 1-800-510-2020 for referral to senior services anywhere in the state of California. If you need help for a relative who lives farther away, call the ElderCare Locator, 1-800-677-1116, which can refer you to the nearest AAA office.

You can also get information from your elder's doctor or other medical professionals, community mental health centers, hospital discharge planners or social workers, geriatric care managers, local and national medical associations, senior centers, family service agencies, adult protective services and rehabilitation centers. Many private businesses are now involved in facilitating elders remaining independent; check with pharmacies and grocery stores, for example. Employment services that specialize in older workers are a good source for companions, drivers and housekeepers for an older person living alone.

Word of mouth is also a valuable resource. Check with religious and civic groups, neighbors and friends. Many churches and synagogues sponsor volunteer programs to run errands for seniors or visit shut-ins. Hospitals and geriatric clinics conduct physical examinations and mental and nutritional evaluations; international organizations provide translation services and referrals. Private organizations and hospitals, among others, offer support groups.

If you have the funds, but not the time or patience to do the care giving yourself, consider hiring a private geriatric care manager, a licensed professional who will develop and administer a course of action, and monitor the care plan for you. This is especially valuable in long-distance caregiving. For a referral, contact the National Association of Professional Geriatric Care Managers, 1604 N. Country Club Road, Tucson, AZ 85716, 520-881-8008.

Setting Up a Care Plan

For any care plan to work, your elder should be included in every possible aspect of the planning process. This will not only assure that his or her dignity is respected, but also that the plan will be followed. Whether your elder needs short- or long-term care, allow for flexibility as new challenges arise.

Depending on your relationship with your elder and with other family members, and on the elder's willingness to admit there's a problem, it may be hard to broach the subject of needing help. It's important to remember that our parents' generation came through the Depression and a World War; they are proud and independent, often unwilling to admit to "weakness" or any need for services.

Sometimes you can get around a stubborn or non-communicative elder by getting a trusted friend, physician or clergy member to bring up the subject. You can also raise the topic by suggesting, for example, that you need their help with your own financial or estate planning.

One of the first orders of business is to determine who will be the "primary caregiver," the one who will have the main responsibility either for the actual care, or for putting all the pieces of the plan together and monitoring them through their inevitable progression. If possible, involve as many family members, significant friends or neighbors as possible in building a network of caring people who ensure that your elder is being monitored at all times no matter how small or how large the needs. Make sure each person knows what is expected and encourage feedback and suggestions for improvements or alterations as the situation changes.

Be aware that in many families, old sibling rivalries and unresolved emotions toward elders can arise. You may resent that your brother doesn't do enough, that your parents aren't getting the love they need from relatives, or that you weren't "mothered" the way you needed. Be realistic, and don't expect 100 percent agreement on everything. Recognize roles that family members have played in the past and try not to exclude anyone.

One of the hardest aspects of caregiving is the emotional toll that can arise from unexpectedly having to assist your elder. For many of America's care providers, duties range from helping with grocery shopping and doctor's appointments, to having to diaper and bathe an elder. Sometimes these tasks are challenging.

Care providers commonly have a range of emotions that can make them feel embarrassed and isolated. The reasons include guilt over feeling that you are not doing enough or that you can't protect your loved one from further harm, denial of the problem, and anger and frustration over not being able to get your loved one to do what you think is best.

Establishing a well thought-out but flexible care plan will help relieve stress for everyone involved. In addition to learning what resources are available, you especially need information about your loved one's mental and medical status. You need to collect data on health care, and legal and financial affairs. You need to gather names, addresses and phone numbers of all physicians and specialists, attorneys and financial planners; lists of medications and health history; locations and numbers of health insurance policies and legal papers; assets and debts, expenses and income sources. Many financial decisions need to be made at the planning stage, so they can be implemented when needed. For example, purchasing long-term care insurance or meeting Medicare eligibility requirements are steps that can affect plans both at home and in a nursing home.

You need to ask the following questions:

  • How much of my elder's dependency is due to illness or infirmity, and how much is attributable to personality, habits and coping styles?
  • Am I or my family reinforcing dependent behavior while my elder is anxious and able to remain independent?
  • Have I presumed that certain frailties exist or have they been confirmed medically?
  • What problems are a result of natural-aging processes? What problems can be corrected by making changes in my elder's living environment, medications, etc.?

Home and Day Care

It's a natural human desire to stay in familiar surroundings and remain involved with community and family. This desire to "age in place" is making home care one of the fastest-growing segments of the health care industry.

Many social service agencies and other health care organizations provide a variety of medical, nursing and personal services to help people stay out of institutions. Home care is also usually more cost-effective. Those who use home care services include people who are discharged from a hospital or nursing home but need additional care; the terminally ill who want to die in the comfort of their own homes; those with short-term skilled medical needs; and those who need assistance to live independently at home due to age, chronic illness, or disability.

Home services include any combination of health care, medical equipment, respite care, non-medical homemaker and chore services (housekeeping, bathing, meal preparation), home-delivered meals, nutrition management, home repairs or weatherization, companion services, counseling and rehabilitation, telephone reassurance, and emergency response systems. These "custodial" services can be hourly, weekly, monthly or any other arrangement.

Home health care can also mean skilled services such as nursing, physical therapy, occupational therapy and speech therapy. Medicare will pay for skilled health care in the home when it is medically necessary to treat an illness or injury if the care is furnished by a participating home health agency; if the care needed includes intermittent skilled nursing, physical, or speech therapy; and if the patient is homebound and under the care of a physician who sets up a home care plan. Custodial care is not covered under Medicare when it is the only kind of care needed; that care is primarily for helping with activities of daily living and not considered skilled.

You can find home care through friends and relatives, family service agencies, AAAs, hospital personnel, physicians, nursing registries and medical organizations, especially if the need is a result of illness or disability.

An elder's ability to remain independent may depend on services that seem simple, but are critical. The least intrusive are volunteer services in which people make weekly visits, for example, or daily telephone calls.

Home Health Agencies

Home care is also provided by private home health agencies, through physician referrals by way of the hospital discharge planner, and through public health departments. Workers can be registered nurses, therapists or home health aides. Homemakers and chore workers may provide services that preserve the dignity and confidence of your elder, preventing a slide into depression that can precipitate a decline and subsequent need for a nursing home.

If you go to a referral agency (home health care, visiting nurses), ask how long it has been in business and insist on references. Ask how the agency screens employees and monitors workers, and if there are substitutes when needed. Ask about the qualifications and training of workers, and whether the agency insures against misconduct. (Agency home health aides are certified and must complete a training course and pass a state test.)

Find out exactly how much you will be charged and how much the worker is paid. Insist on references and check them carefully. Get the phone number, address, driver's license and Social Security number of the prospective aide, and don't be afraid to complain to the agency if you are dissatisfied with the work. Home health agencies will consult with your elder's doctor and prepare a written plan of care. The supervising nurse will visit with you concerning this plan, and will discuss costs. If you are not satisfied, keep looking.

Home Modification

Sometimes all it takes for an elder to remain at home are some modifications in the house itself. These can range from more lighting to installing grab bars in the bathroom. Financial assistance for energy bills can also help; PG&E has a program for eligible seniors called HEAP/LIRA through the Department of Community Services and Development (1-800-433-4327). Pacific Bell can provide telecommunication devices. Senior centers and AAAs can often provide free or low-cost home modification services. Check with the United Way for volunteer groups who do these repairs.

Common adaptations might include:

  • Raising toilet seats, or installing hand-held shower heads and bath benches.
  • Rearranging furniture for easy passage or hiring a contractor to widen hallways or cover steps with a ramp.
  • Replacing doorknobs with lever-type devices.
  • Covering light switches with foam to make the lever longer and easier to reach or grab.
  • Installing a security system if it will make your elder feel safer.
  • Checking that doors and locks are easy to use and replacing them if they are not. (Doors should have dead bolts.)
  • Removing all throw rugs and installing non-skid strips in bathrooms, on stairs, and other well-tracked areas.
  • Setting up an emergency response system, especially if your elder lives alone. (Your Area Agency on Aging should know which hospitals have such systems.)
  • Setting up a support system with neighbors, relatives and friends, postal workers, grocers, utility readers, bank tellers and others whom your loved one comes into contact with regularly. Some communities have these "gatekeeper" programs already in place.

Adult Day Care

One of the fastest growing segments of the aging network is adult day care or adult day health care. Sometimes these services are known as respite care, because they give the caregiver a break while allowing an elder to remain involved in the community.

At adult day care, your elder will have some combination of social and art activities, a hot lunch and a place to be cared for while you are at work. Rates average $40-$50 a day, with discounts for those who qualify due to low income. Adult day care is not covered by Medicare.

Adult day health care is a more structured setting that includes medical monitoring, occupational and physical therapy, counseling, support groups for families, etc. For those who qualify, Medicare or Medicaid (Medi-Cal in California) subsidizes these costs.

There are specialty day centers for those with Alzheimer's and related dementia; they can be sponsored by hospitals, nursing homes, churches, mental health facilities, and city park and recreation departments. There are also more specialized facilities in "assisted living" communities.

You may find that your elder is resistant at first to going out of the house or to a new place. This isn't uncommon; make a deal to try it for two or three weeks. Usually by that time you'll know whether it works out; more often than not, it will.

If you're looking for adult day care:

  • Decide what level of activity and care your elder wants or needs.
  • Decide what you need (occasional free time, coverage while at your job, transportation, support, help in developing a care plan).
  • Find a center by asking the doctor, checking the Yellow Pages under "Adult Day Care," "Aging Services," or "Senior Citizens Services," or calling your local Area Agency on Aging. Also check with social service agencies such as Catholic Charities, Family Services, and Jewish Family and Children's Services.
  • Call the centers and ask for fliers or brochures, eligibility criteria, costs and discounts, a monthly activity calendar, menu and application procedures.
  • Find out who is the owner or sponsoring agency, how long the center has been operational, hours and days of operation, staff credentials and ratio to clients.
  • Discuss all aspects of respite or day care with your elder.
  • Find out if the center is certified, if your elder relative can begin on a trial basis, and if the service is regulated by the state.
  • When you visit, look to see if staff members seem cheerful, helpful and competent, if there are unpleasant noises or odors, if the clients are enjoying themselves, if there are safety features all around (such as handrails), and if there are any medical or therapy services.

Family Homes and Assisted Living

Leaving home can be traumatic for an older person. It can end special life patterns, including friends and routines, producing great anxiety and feelings of loss. However, if an elder is socially isolated, if it's too hard to finance upkeep or home repairs or if the home design cannot accommodate disability, then you should consider alternate housing arrangements.

There are more options than ever as a new "seniors housing" industry jumps into full swing. As the U.S. population ages, there has been a shift away from institutional settings toward "assisted living" - homes or large communities that offer independent living with limited health and personal care services.

Here are some options to consider:

Living with Family Members

Some elders are able to move in with their adult children and family, or vice versa, perhaps after some home reconstruction. If you consider this option, be sure everyone in your family is involved in the process. Be aware of the possibilities of lifestyle conflicts, the physical demands of 24-hour oversight, and changes in marital and familial relationships. Be sure to work out the finances and living arrangements before the move, especially if it's long distance. On the plus side, multi-generation households offer a special quality of life, especially if there are grandchildren, and it is much easier to monitor diet and medications with your elder in sight.

Sometimes children move into their parent's home, perhaps after modifications. Be sure you consider all the financial and lifestyle ramifications, as well as issues of control and interdependence.

By making some changes in the house, a separate self-contained unit called an accessory apartment can be created - if zoning laws allow. Entrance is usually separate from the main house.

Sharing a home is also a common solution. In this situation, your elder can be matched with another applicant who may split housing and utility costs in exchange for services. There are also social advantages, especially if your elder lives alone. An extra bedroom can be rented or your elder can join a group residence. Word of mouth, newspaper ads, and community bulletin boards can also be helpful. Before making any change, however, be sure that the responsibilities and expectations of all parties are clearly defined, such as how household duties and finances will be split, how disputes will be handled and what happens if your elder's housemate becomes ill.

Assisted Living

No longer is a nursing home the only alternative to living at home. If your elder does have to move, there are several "in-between" options, depending on your elder's medical and mental condition. Many of these facilities have requirements, including what levels of care are provided, what happens if your elder deteriorates or is no longer ambulatory, and under what conditions your elder will be forced to find another facility if his or her care can no longer be maintained at current conditions. Make sure all requirements are thoroughly spelled out.

Age-segregated apartments or "independent living." This setup is often referred to as "senior housing" and is apartment living with age peers - usually 55 and up. Check with your local Public Housing Authority or AAA for details.

"Congregate living" or "assisted living." These are mostly rental units that offer a moderate level of support services in addition to meals. The range of services might include housekeeping, transportation, health and wellness programs and emergency response systems. These homes typically provide private living quarters with a central dining room. Transportation, shopping and housekeeping services are often provided, as well as professional staff such as social workers, counselors and nutritionists. In some cases, costs are subsidized by the U.S. Department of Housing and Urban Development under Section 8.

"Board and care" or "residential care for the elderly" (RCFE). These homes offer room and meals and some level of supervision or personal assistance, but not skilled medical care. They are bridges between living independently and living in an intensive medical setting. This rental housing system provides housekeeping and personal care services for as few as three or four people to as many as 150 or more. The larger homes offer more activities and services. California puts serious restrictions on what levels of care RCFEs can provide. They are not required to have nursing staff and are not allowed to care for clients who need that level of service. Check the Yellow Pages under Homes - Residential Care for listings.

In board and care homes, administration and staff are required to report significant health changes to the resident's doctor and family. Assessments must be made regularly, and residents must have access to medical and dental services.

Some board and care homes are specifically for those with a dementing disease. Others will not accept anyone who causes disruptions or who wanders. In some cases, a resident must leave when a medical or mental condition worsens beyond the home's ability to care for him or her . All states require these homes to be licensed; check with the State Department of Social Services for the record of any home you are looking into. In California, call the Community Care Licensing Division at 916-229-4530.

Questions to Ask When looking for Assisted Living

  • Is the facility licensed? If not, it means the care is not being monitored.
  • Is it adequately staffed? Are staff members cheerful, helpful, clean, energetic?
  • Are the meals nutritious and adequate?
  • What is the level of activity? Do residents just sit around, or are there planned outings, reading materials, music, etc.?
  • Is the facility clean, tidy, odor-free?
  • Is the contract clear? Make sure all the services you have arranged for, as well as the fees and levels of care, are spelled out clearly in the contract.
  • What are the restrictions on medical conditions under which a resident can be admitted and continue to live there?
  • What are the facility's home inspection records? Check with the state Department of Social Services, Community Care Licensing Division, 916-229-4530.
  • How much privacy will your elder have? Are pets allowed? How much personal furniture, etc., will be allowed? Is the bathroom shared?
  • What are the real costs, including add-ons? Most facilities are not covered under Medicare though in some cases Medicaid or Supplemental Security Income qualifies. Check with our local office of the Social Security Administration, or call 1-800-772-1213.
  • Do the residents have outings, go to religious services? Do they seem well-groomed, happy, active?

Retirement Communities and Nursing Homes

Continuing Care or Life Care Retirement Communities

"Life care" or "continuing care retirement communities" (CCRCs) contract to take care of your elder for life for an entrance fee and monthly payments. These communities often contain, on one site, a range of housing from individual apartments to skilled nursing facilities. Some communities contract with nearby nursing homes to fulfill this agreement to provide "care for life." These sites usually have dining rooms and a full range of lifestyle options. There's a great variation, however, so you should ask enough questions to feel comfortable.

These questions might include:

  • What is the entrance fee? Is the monthly fee reasonable and affordable?
  • What are the health care obligations and is there adequate staff?
  • What services are covered by the monthly fee? Is the admission fee refundable?
  • What is the CCRC's financial status? Is it solvent? What is the track record?
  • Do the fees increase with level of care? Who decides when the resident is no longer able to live independently and must move to the "assisted living" quarters?
  • Are there enough nursing home beds to accommodate everyone? Are nonresidents admitted to the skilled facility?
  • If possible, go over a CCRC contract with an attorney before signing. The terms should be checked through the State Department of Insurance, 1-800-927-HELP (927-4357), and contracts for several communities should be examined.

Nursing homes, also called convalescent homes, are licensed by the Department of Health Services, 1-800-554-0352, to provide both skilled nursing and custodial care. Residents may be recovering from a hospital stay and in need of rehabilitation and personal services such as grooming and bathing, or may be admitted because of a terminal illness or debilitating disease such as Alzheimer's, when 24-hour care is needed. These homes are traditionally called Skilled Nursing Facilities (SNFs), which provide 24-hour nursing care, or Intermediate Care Facility (ICFs), which provide similar services to SNFs but not around the clock.

The traditional image of nursing homes brings unease, but these facilities have changed dramatically over the past 50 years. Although half of those aged 65 and older stay in a nursing home at least once in their lives, these facilities are no longer just places where people go to die. For example, nursing homes handle patients discharged from hospitals who don't need an acute level of care but are not yet ready to return home.

There are two primary considerations about nursing homes when this becomes the only sensible option for the well-being of your elder. The first is emotional; the importance of the transition from family home to nursing home is not always acknowledged. The change can represent a series of losses, and support systems should be in place before this move is made. Secondly, it is important to do strong financial planning beforehand. Public programs such as Medi-Cal pay for nursing home care, but if your elder is not qualified for this government entitlement, then typically most of the costs will be out-of-pocket. Medicare only covers the "skilled" aspects of nursing home care, not custodial services.

Choosing a Facility

Choosing a nursing home is a difficult proposition at best, both physically and emotionally. Ideally, you would have time to plan ahead, but that is not always possible. You can find nursing homes through your local senior information and referral office, and the State Ombudsman Office located in Oakland, (510) 465-1065. (Ombudsmen are trained professionals who advocate for patients and families in long-term care facilities; they answer complaints, investigate facilities, etc.) Ask hospital discharge planners, social service and family service agencies, friends and neighbors, and check the Yellow Pages under "Nursing Homes" and "Homes-Residential Care."

Four important factors in choosing a facility are: what kind of care is needed, what financial resources are available, what location is best, and what kind of lifestyle is desired. California Advocates for Nursing Home Reform (CANHR), 415-474-5171, is also a good resource for questions and concerns about nursing homes.

Consider other options before placement in a nursing home. Sometimes all an elder needs is personal care services at home, closer monitoring by a physician (diet, hydration, medications) or home repair and modification. Consult with as many professionals as you can before making a placement.

Payment options and finances are especially critical to understand long before nursing home placement is considered. Familiarize yourself with long-term care insurance policies, also known as "nursing home policies," and Medi-Cal eligibility rules before considering placement. One source is the California Partnership for Long-Term Care, 1-800-CARE-445 (227-3445), or CALPERS, which offers insurance policies for state employees.

There are many excellent sources for learning about Medi-Cal eligibility. One is your local HICAP office, or Health Insurance Counseling and Advocacy Program which offers free counseling to Medicare beneficiaries about health insurance options. Ask about "spending down" assets to required levels (around $2,000, though the amount varies by state); eligibility requirements, application procedures and processing time; the possibility of liens on real estate after the death of the person in the nursing home; "spousal impoverishment," or the ability of the well spouse/domestic partner to remain in the family home with a certain level of assets; and other forms of health insurance such as "Medigap" policies, which supplement Medicare coverage. Your local Social Security office can also help you.

Location is critical because it can make the difference in your loved one's ability to have visitors frequently, and your ability to visit as often as needed or desired. Take into account your elder's social situation before deciding to relocate. A sense of loss of friends and familiarity can be more devastating that the move itself.

Lifestyle preferences can influence the choice of a convalescent facility. Some of them are geared toward active residents; some have special ethnic menus and activities. Size of the facility is also important. The smaller ones may be more intimate but with less to do and larger ones will be more stimulating, but may provide less personal attention.

Medicare Coverage

Care in a skilled nursing facility (SNF) is the only type of nursing home care that Medicare covers. It does not pay for services that are primarily custodial (bathing, grooming, housekeeping). There are two parts of Medicare coverage: Part A (hospital insurance) and Part B (medical insurance). Part A can help pay for care - inpatient hospital care, post-hospital skilled nursing care, post-hospital home health care, and hospice care - at a SNF under five conditions:

  • The medical condition requires daily skilled nursing or skilled rehabilitation services that can only be provided in an SNF.
  • The individual has been in a hospital at least three days in a row before being admitted to an SNF.
  • The individual is admitted to the facility within 30 days after leaving the hospital.
  • The care in the SNF is for the same condition treated in the hospital, or for a condition that arose while receiving care in the facility for a condition treated in the hospital.
  • A medical professional certifies that the individual needs, and is responding to, skilled nursing or rehabilitation services on a daily basis.

Some of this coverage can also transfer to care in the home.

Part B has annual deductibles (about $100 a year) and co-insurance, and can be signed up for during special enrollment periods. It pays about 80 percent of physicians' services, other medical services and supplies, home health care services, outpatient hospital care, diagnostic tests, ambulance, second opinions and durable medical equipment. To find out about the monthly premium, call your local Social Security office.

Looking for a Nursing Home

Here are some tips to consider when looking for a nursing home:

  • How will your family meet expenses? What are the base costs? What are add-on costs (e.g., laundry, bandages, beauty salon)?
  • Is the facility Medicare- or Medicaid-certified? What rehabilitation services are provided?
  • Is the home clean and odor-free? Are requests for assistance responded to quickly?
  • Does the nursing home require that a resident sign over personal property or real estate in exchange for care?
  • Are the residents happy, alert, groomed, clean, well-fed, healthy? Are they restrained to wheelchairs, lethargic?
  • What levels of care are available, and are they appropriate to your elder's needs?
  • What is the staff-to-resident ratio?
  • How often are meals repeated? A re alternatives available, as required by law? Are there any ethnic-specific diets?
  • Can residents bring their own furniture and personal effects to decorate the room? Is there a safe for valuables and money?
  • Do activities cover a broad range? Is there an activities coordinator?
  • Is there a family council for residents? When does it meet and who coordinates it?
  • What is the procedure for leaving the facility temporarily, such as hospitalization or vacation? Will your elder's place be held?
  • Is the ombudsman program's phone number listed?
  • You should visit each nursing home under consideration more than once - unannounced and at different times. Talk to residents and staff, ask what they like and don't like. Take a guided tour, then come back on your own.

Elder Abuse

There is no universally accepted definition of the phrase "elder abuse," and state statutes vary considerably. However, it is generally agreed that elder abuse can involve any of the following: physical abuse, psychological/emotional abuse, financial abuse, neglect, and abandonment. For more information on elder abuse, contact the Adult Protective Services office in the county where the elder resides. If the elder is in a board and care home or long-term facility, contact the Ombudsman in the county where the home or facility is located

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