Elder Care and Assisted Living: Who Will Care for You?

In 2010, Wallace Kirkpatrick, 89, was living alone in San Antonio after his wife died. A friend suggested that “Kirk,” as everyone called him, get an apartment in the assisted living facility where he also lived. Kirk soon settled into Esplanade Gardens. “He had a buddy there, and he got along with the director, so he fit in very quickly,” says his daughter, Tara, who lives nearby. Kirk was especially pleased by the dining service, which made grilled bacon-and-cheese sandwiches, one of his favorites, on request.

For six years Kirkpatrick was happy. But by spring 2016, when he was 95, he began to show small signs of cognitive impairment. “Once he forgot where he was going, and another time he tried to unlock the apartment next door to his by mistake,” Tara says. A newly arrived facility director insisted that the incidents meant Kirkpatrick needed more supervision than the residence could provide. That meant his family would have to move him to a facility with a memory care unit or hire additional caregivers.

The Caregiving Gap

For older Americans, assisted living offers a compelling promise. Your aging parent can live in an apartment with hotel-like services and receive help with medication, bathing, and other tasks of daily living.

By contrast, a nursing home provides 24/7 care for seniors needing medical support. Other kinds of senior-living communities are designed for people who are more active and high-functioning. But these differences are very loosely defined, which can make comparing facilities difficult. And whereas more hospital-like nursing homes are regulated at the state and federal level, oversight of assisted living facilities is uneven at best. A good one can be an excellent choice for someone who can no longer live on his or her own. A bad one could put your loved one at risk. (Find out what care costs state by state.)

Assisted living is also a growth industry. As of 2014, about 835,200 older Americans resided in these facilities, up from 733,300 in 2010, according to the Centers for Disease Control and Prevention. But all too often, as the Kirkpatrick family discovered, assisted living communities lack the resources or expertise to meet the needs of a population that requires increasingly intensive medical care.

Seniors in assisted living tend to be older and sicker than previous generations. In 2016 the average move-in age was 84, with a large number of seniors arriving after a medical emergency, according to A Place for Mom, a national senior housing referral agency based in Seattle. Studies show that more than half of residents have some form of cognitive impairment, according to Paula Carder, an associate professor at the Institute on Aging at Portland State University in Oregon. “Many assisted living facilities are taking residents who have no business being there,” says Amy O’Rourke, president of the board of directors of the Aging Life Care Association, an organization of aging-life-care experts, also known as geriatric-care managers.

Not surprisingly, consumer complaints about assisted living are on the rise, according to long-term-care ombudsmen, trained advocates who operate in all 50 states. Some 55,000 complaints were filed in 2015, compared with 50,126 in 2012, almost a 10 percent increase. In a recent survey of ombudsmen for Consumer Reports, the National Consumer Voice for Quality Long-Term Care, an advocacy organization, found that the most frequent complaints included understaffing, delays in response to calls for assistance, and threatened eviction. About 80 percent said their state government doesn’t provide sufficient regulatory oversight for assisted living facilities.

That’s not something you’re likely to hear from assisted living providers. “The marketing and sales people are trying to fill apartments,” O’Rourke says. “They’ll tell you they’ll take care of you for the rest of your life.” They’re also likely to tout their high-end amenities, such as wine cellars, libraries, and calendars crowded with cultural events.

The industry’s own surveys show high rates of satisfaction with assisted living, says Rachel Reeves, a spokeswoman for the National Center for Assisted Living, an organization that represents the country’s assisted living and other long-term-care communities. She says the NCAL “discourages undisclosed or exaggerated information” because doing so “diminishes trust and damages the relationship between the assisted living community and the customer.”

Attractive amenities can contribute to a hefty price, mainly paid out of pocket. In 2016 the median cost for a one-bedroom was $3,628 per month, or $43,539 annually, according to a 2016 survey by Genworth, a long-term-care insurance provider. In some regions, costs can exceed $60,000 per year (see information on costs, below). Medicare generally does not cover long-term care. Most states provide for some Medicaid coverage of long-term care in assisted living, but the coverage varies widely by state, and to qualify, the resident must spend down his or her assets and meet other criteria. Not-for-profit continuing-care retirement communities typically provide funding for residents who start out in independent living, then move to assisted living and later run out of money. Otherwise, the resident would have to move out unless family members can tap other funding. Many nursing homes take Medicaid, but at press time, because of the ongoing healthcare debate in Congress, the program’s future funding was uncertain.

Identifying the right assisted living facility for yourself or your parent is difficult, and loose regulatory oversight is a main reason. Under federal law, nursing homes must provide adequate nursing staff and meet other standards. But assisted living is not governed by federal rules. Each state makes its own rules, which are often minimal—some don’t require that a facility hire a licensed nurse, for example.

Many advocacy groups, including Consumer Reports, argue that stronger regulations are needed for assisted living. (See “Protections Consumers Need,” below.) “We are concerned that there isn’t enough effective public oversight, including from the federal government,” says Chuck Bell, programs director at Consumers Union, the policy and mobilization arm of Consumer Reports. The NCAL doesn’t see it that way. “Assisted living is unique to each community it serves, whether in size, services, or specialty, which makes it inappropriate to regulate on a national basis,” says the NCAL’s Reeves. “State regulation is better suited to meeting the needs of local communities.”

A Shortage of Staffers

More regulation would probably improve residents’ access to assistance, consumer advocates say. It’s not uncommon for assisted living facilities to have only one or two direct-care staffers per 20 residents at night and perhaps one or two on duty per 15 residents during the day, says Carder at Portland State University. These staffers tend to be paid low salaries, often minimum wage. Nurses are also scarce—a handful of states have provisions regarding how many hours a nurse needs to be on call, or on site, so quite often facilities have no nurse present.

Staffing shortages recently sparked a lawsuit, filed on behalf of Louise McGraw and Charlotte Rogers, who have since died, although the case is still progressing. Both lived at Greystone Inn, a West Virginia facility owned by Chancellor Senior Management. The plaintiffs’ attorneys, who are seeking class-action status for the lawsuit, allege that Chancellor bases its staffing on the parent company’s labor budgets and profit goals, and not on an assessment of residents’ individual care needs, as contractually promised.

The lawsuit alleges that McGraw fell, broke her hip, and was hospitalized because she did not get assistance she was entitled to by Greystone Inn. According to the lawsuit, McGraw repeatedly became dehydrated, she was left unattended, and her calls for help were ignored. Rogers was hospitalized for dehydration within four days of admission to Greystone, the lawsuit alleges. After her discharge from the hospital, she returned to the facility. But she was hospitalized two more times for dehydration, malnutrition, and urinary tract infection.

Executives from Chancellor did not return calls for comment. Reeves says the NCAL strongly encourages facilities to provide care by “assessing the staffing needs for each unique resident.”

Adequate staffing is especially critical for dementia care, a fast-growing service now offered by about 60 percent of assisted living facilities. It typically costs about $4,700 per month. Although Carder says 38 states require dementia care training for staff, she adds that only 16 states require a license or certification for dementia care units.

Making the Right Moves

Despite these challenges, families can find high-quality assisted living facilities. But start your search well before you or your parent actually needs care. If your parent’s health declines, assisted living might not even be an option, says Deborah Fins, an aging-life-care expert in Worcester, Mass. Many facilities will not take people who are wheelchair-bound or need help with multiple chronic conditions, but some allow residents to stay if they become more infirm. To help you target your search, here are four key questions to ask:

1. What Kind of Help Will the Resident Need?

Perhaps your parent no longer drives and is becoming socially isolated. Or he or she can’t manage stairs or forgets to turn off the oven. For seniors who need moderate amounts of support, assisted living could be the smart choice. Assisted living is working well for Sharon Koenig, 76, who lived alone for two years after her husband died. “I kept waiting for him to come in the door,” Koenig says. She also was having trouble tracking her medications. With help from an aging-life-care expert, who is familiar with local facilities, Koenig looked at several senior residences, including a small nursing home.

Unlike some of the other places, Regal Palms in nearby Largo, Fla., a large facility with several levels of care, offered a varied menu of activities. Last October, Koenig moved to the assisted living section, into a two-bedroom apartment that has space for her 50-gallon aquarium. She gets help with medication but still does her own laundry. “Some people might be afraid of a big place, but I think it’s better,” she says. “There’s always someone to have dinner with.”

Smart move: Make sure your family member has a medical evaluation from a primary care doctor—or a specialist, if your parent has an illness—to understand the level of care required, as well as how those needs might change. For more perspective, hire an aging-life-care expert to help point you to appropriate residences. “Given the wide variation in the types of services provided by assisted living communities, it’s well worth spending the several hundred dollars for a professional care manager,” says Stephen Maag, a director at LeadingAge, an association of nonprofit senior-living groups.

2. How Good Is the Quality of Care?

Make sure the residence is licensed to provide assisted living, to ensure that there’s at least a minimum level of oversight. Take a close look at the residence’s inspection record, which indicates how often it has been checked or whether it has had complaints. (See “10 Helpful Resources,” below.) Some states, such as Florida and California, maintain consumer-friendly assisted living websites that list inspection records and regulatory actions. But some states do not, or they fail to update them. You can also ask your state ombudsman’s office about a facility’s complaint record.

In the end, the best information about quality of care could come from people who visit facility residents, as well as from the residents themselves. Ask the residents specifics about the care—whether meds are delivered on time, for example—and how management responds to complaints, suggests Liz Barlowe, an aging-life-care expert in Seminole, Fla.

Try to make multiple visits to the residence—including at meal time and on weekends. Most facilities will welcome you even if you don’t have an appointment. Talk to residents, and see whether the staffers seem happy or appear overworked.

Smart move: Ask how the residence would handle a fall, a common occurrence. Would a nurse be on hand to evaluate your parent, or would he be sent to the emergency room? And ask whether “the facility provides an on-site clinician or medical staff that can help the resident avoid the expense and health risk of an unnecessary trip to the ER or a hospitalization,” says Alan Kronhaus, M.D., CEO of Doctors Making House Calls, a North Carolina medical group that provides on-site healthcare to assisted living residents.

3. What Are the Real Costs of Care?

Ask for a written list of the fees, and make sure the information is included in your contract. (See “Putting Your Contract Under the Microscope.”) Some facilities have all-in costs that cover room, board, and care for a particular level of assistance, and others have point systems or charge à la carte. (See “11 Ways to Afford the Care You Need.”)

Be sure to get clear information about the circumstances that could trigger higher or additional charges and how the facility assesses those fees, says Patty Ducayet, state long-term-care ombudsman for Texas. What would it cost to have your dad driven to a doctor 10 miles away vs. 5 miles away? Is it okay to hire private aides?

Smart move: Ask about the policy for lowering fees. Say your mom requires a higher level of care for a week to recover from a hospital stay. How quickly can the fees be cut when she has recovered? “Bumping down the charges tends to take longer than bumping up,” says Karen Jones, a state long-term-care ombudsman in San Luis Obispo, Calif.

4. Can Your Parent Be Kicked Out?

Involuntary discharges rank among the top complaints in most states, according to the National Consumer Voice survey. Discharges are usually triggered by lack of payment or care needs that exceed the facility’s capacity to provide the services. The discharge terms should be detailed in the contract, as well as the required amount of notice you’ll receive, which is typically 30 days.

For Jill Goldberg, the possibility of her mom’s discharge was unexpected. Her mom, Sylvia Wenig, 94, was living in Brookdale West Boynton Beach in Boynton Beach, Fla. “We’d been getting great care there,” says Goldberg, 61, who lives near Boston. But after a hospitalization, Wenig lost her mobility and was not allowed to return to the facility. Goldberg asked if her mother could return for a week or two to allow time to find another facility, but Brookdale refused.

Goldberg says she persuaded the hospital to let her mother stay a few more days, and with help from an aging-life-care expert, she moved Wenig to a nursing home. Says Brookdale spokesman James Hauge, “For residents who require more care than the community is able to provide, we inform them of other care options and actively help them find a community that can meet their new care needs.”

Smart move: Don’t rely on the marketing director’s assurances that your parent will be able to age in place. “Verbal agreements are nearly impossible to prove,” says Jones, who recommends getting the promises in writing. With assisted living, it’s better to know exactly where you stand.

10 Helpful Resources

Finding information about assisted living residences in your area will require some digging. Online resources can speed your search. You can also enlist expert help that can save time and avoid costly mistakes.

For an Overview of Senior Housing Options: AARP
Comprehensive information on independent living and nursing homes, as well as assisted living. 

To Start Your Search for an Assisted Living Facility: Caring.com
Click Assisted Living, then enter your ZIP code to find residences; listings include communities and services with current state licensing.

If You’re in a Hurry to Find a Residence: A Place for Mom
This referral service is free to consumers; providers pay the site a fee if you move in. 

To Get Help From an Aging-Life-Care Expert: Aging Life Care Association
Click on Find an Aging Life Care Expert to search in your state. 

To Check the Assisted Living Regulations in Your State: National Center for Assisted Living
Go to Advocacy, then State Regulations to see rules for every state. 

A Starting Point for Checking Assisted Living Violations: A Place for Mom
Click on your state to find out how to obtain inspection reports.

To Contact Your State Long-Term-Care Ombudsman
National Long-term Care Ombudsman Resource Center
Use the map tool to locate links for your state. 

To Get a Legal Review of Your Contract
National Academy of Elder Law Attorneys

For the Basics on Long-Term-Care Benefits
LongTermCare.gov
This federal website provides an overview of long-term care, as well as links to Medicare and Medicaid information.

For First-Person Insight Into Assisted Living
The Thin Edge of Dignity
Dick Weinman, a retired professor of broadcast communications at Oregon State University, became wheelchair-bound in 2005 after a car crash. In this short documentary, he describes his personal experience with assisted living and how he manages to stay active.

Protections Consumers Need

Consumer Reports recommends these 6 steps to improve care in assisted living.

It’s clear that the assisted living industry needs to evolve to manage the increasing health needs of the population it aims to attract. In that vein, more federal and state regulatory oversight is urgently needed to protect residents and their families. CR believes policy makers should better protect consumers of assisted living facilities by doing the following:

Define Assisted Living and Levels of Care
The term “assisted living” can describe anything from a facility that merely offers room and board to one that provides full-time nursing care. As a result, confused consumers can end up paying for services they don’t need or, worse, not getting the care they do need. Policy makers should establish and clearly define level-of-care classifications, and facilities should be required to use the classifications to communicate the assisted living services they offer.

Set Staffing and Training Standards
Staff training and qualification requirements, and minimum per-resident staffing levels, should be set according to level-of-care classifications. Qualified, licensed medical staff should monitor the overall health of residents and administration of medications. Special staffing requirements should be established for residents with high-level care requirements, including residents with dementia.

Establish Resident Rights
Policy makers should establish a comprehensive Bill of Rights to ensure some basic rights for residents, including the right to make everyday decisions; receive visitors at any time; refuse treatment; access and control their own money; question and object to facility practices and policies; make formal complaints to administrators and regulators; and bring lawsuits seeking court orders to stop illegal activities and violations and to compensate residents for rights, standards, or contractual violations (a right that should prevail even when residents have signed forced-arbitration clauses, which should be restricted).

Support Aging in Place
Policy makers should narrow the number of allowable reasons for evicting residents. Reasonable accommodations should be made, when possible, to allow a resident to remain in a facility, and all services allowable under a resident’s level-of-care designation should be made available. If a resident who initially paid privately goes on Medicaid and resides in a Medicaid-certified facility, that facility should be required to accept Medicaid reimbursement for that resident.

Enforce Regulations
Policy makers should establish rules requiring inspections tied to levels of care. Penalties for violations should be strengthened and applied on a per-violation and per-day basis.

Make Price and Quality Information Transparent
Policy makers should establish a system that enables consumers to compare costs, features, and services across facilities and types of facilities, including information related to facility inspections and disciplinary actions.

Editor’s Note: This article also appeared in the October 2017 issue of Consumer Reports magazine.

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