There is now a truism within the senior living industry that independent living has become assisted living and assisted living has become nursing. Where once they may have had clear, separate identities, any division between them is now clearly quite gray.
Why is that? The answer lies in two laws, both enacted more than a quarter century ago. The first is the Fair Housing Act of 1968. The second is the Americans With Disabilities Act (ADA) of 1990. Even though they were signed into law decades ago, their true impact is still evolving. And, as lawsuits continue to be filed alleging discriminatory practices in senior housing, that gray area is becoming even grayer.
The Fair Housing Act
Enacted in 1968, The Fair Housing Act prohibits discrimination in the sale or rental of housing on the basis of race, color, sex, religion or national origin. It was then amended in 1988 to include “familial status” and “handicap”‘ to the list of prohibited grounds for discrimination.
While this amendment exempted housing for “older persons” from its definition of familial status (which allowed for the creation of 55+ and 62+ senior communities), it does prohibit discriminating against anyone with a disability from moving in.
The Fair Housing Act also mandates that anyone providing housing permit “reasonable accommodation” if modifications are requested for a disabled individual to enjoy an equal opportunity to use the facilities.
The Americans With Disabilities Act (ADA)
The ADA, enacted in 1990 and amended in 2008, looks at commercial structures. It prohibits discrimination on the basis of physical or mental disability in “public accommodations operated by private entities”—specifically recognizing long-term care facilities such as assisted living facilities and nursing homes.
The ADA also imposes specific architectural standards that mandate the removal of “barriers” to accessibility, regardless of the year of construction.
Exemptions can be made if an individual cannot afford to move in or poses a “direct threat” to others.
Finally, it is important to note that LGBTQ renters are currently not protected under the federal fair housing laws. However, some states and cities do have nondiscriminatory fair housing laws that protect LGBTQ persons from discrimination.
How do these laws apply to Independent Living or Assisted Living?
As the American Seniors Housing Association and Hanson Bridgett note in their 2016 Seniors Housing Guide to Fair Housing and ADA Compliance, it’s a matter of “Balancing Rights and Risks.”
Translation: The senior housing industry is keenly aware of these regulations—and possible lawsuits. Their challenge is to keep occupancy high (which above all else is the #1 goal) even as they balance the wants of the truly independent residents against the needs of the truly disabled.
As a result, if your loved one is in a wheelchair or on a walker or even have a full-time caregiver, are over either age 55 or 62 (depending upon the community), can afford the rent and are not a “direct threat” to anyone (including themselves), they have the right to move into independent living.
Likewise, if your loved one is completely able-bodied and healthy but are taking care of a spouse who needs assistance, many assisted facilities would be happy to allow them and their spouse to move in together—which, if they can afford it, may be a great way to reduce your caregiving burden, while they remain by each other’s side.
There are even memory care communities that are allowing a spouse who is one hundred percent capable in all matters to move in alongside their husband or wife who suffers from dementia so that they may remain together.
No matter how they’re defined, each can be a wonderful, supportive community in which to live.
So which do you choose as the place in which you want a loved one to live?
At its heart, the difference could well be dependent upon how much they can afford. But first, an overview of each:
You may see independent living communities referred to as:
- Retirement Communities
- Congregate Care
- Retirement Villages
- 55+ Communities
- Active Living Communities
- Active Adult Communities
- Senior Apartments
- Continuing Care Retirement Communities (CCRC)
In theory, these are generally the first step in the move from home—whether it is into a stand-alone facility or part of a Continuing Care Retirement Community (which incorporates independent living, assisted living, skilled nursing and perhaps even memory care on one campus).
An independent living community offers support to seniors who may be still very independent and want to give up the responsibilities of caring for a home and/or even driving. They can also take some of the burden of care off of a spouse who is still independent and is providing care for their husband or wife.
These communities generally offer studios, one-bedroom and two-bedroom apartments or cottage homes with a wide range of services and amenities—from fine dining and golf to theaters and outings. A meal plan is generally included which can vary from one to three meals a day.
As long-term care insurance, Medicare or Medicaid does not pay for the expense of an Independent Living Community, you or your loved one would pay out-of-pocket costs ranging from several hundred to several thousand dollars a month for the first person with a second person fee of a lower amount.
If the monthly fees appear a little high to you, don’t be afraid to ask about any move-in incentives—particularly if you’re approaching the end of the month. These incentives can take many forms, including discounting rent, rent freezes and waiving an entry fee.
Retirement communities, like any business, have sales quotas to remain profitable. If the month has been slow, they would rather reduce your rate than watch you go to a competing community. (Keep in mind that this may not be the case at a Continuing Care Retirement Community, which will be examined in a future post.)
No matter what rate you agree upon, be forewarned that monthly fees are not permanently locked in (with the exception of some CCRCs), any more than they are at a traditional apartment community. They can be (and generally are) raised on an annual basis as labor, food and fuel costs rise.
Any annual increase won’t necessarily be tied to a cost-of-living increase in Social Security payments, either. To effectively budget for their coming year, a community has to project what any increases may be to cover their costs, while Social Security looks back over the past year in an attempt to make compensation.
If you are able to negotiate a lower rate but it’s still not low enough, there may also be subsidized apartments for seniors at substantially lower rates in your area.
Assisted Living communities
Generally considered to be the next step in the progression of long-term care, Assisted Living Communities (or personal care homes) are state and federally licensed facilities. They are designed for seniors who are no longer able to live on their own independently, require assistance with their Activities of Daily Living (ADLs) and do not yet require the higher level of care found in Memory Care or a Skilled Nursing Facility.
Within an Assisted Living community, a senior would benefit from such things as assistance with medication, three meals a day, planned activities and licensed staff. Depending on the structure of the facility, it may also offer Memory Care for individuals with Alzheimer’s or other forms of dementia.
Depending on where you live, there may be different levels of assisted living being offered. Some communities may offer care 24 hours a day. Some may not.
As Jim Rendon of MarketWatch notes, “Existing rules vary immensely from state to state, and even within a given state. In Florida, for instance, there are four different types of licenses for varying levels of care. There is no national standard for training: While some states require upwards of 25 hours of training for staffers, others have no minimum, only requiring that certain topics be covered.”
Unless your loved one has long-term care insurance, they could expect to pay $2,500-$4,000 out-of-pocket per month for an assisted living apartment depending upon its size and the amount of personal care required. Be aware, however, that those costs could rise dramatically as any needs for care progress. As Jody Spiegel, director of the Nursing Home & Assisted Living Advocacy Project warned, “There is no limit on what you can charge for.”
Again, rates may be negotiated to some extent, just as you could with an independent living community (though you’ll want to be careful of a lower base rent accompanied by a rapidly escalating level of care). There may be lower-income options, as well, should you or a loved one qualify. You can contact the specific agency in your state or visit ElderCareLocator to learn more about what’s available and their qualification guidelines. Most of these facilities will also accept Medicaid.
So what’s best for you?
You may have a lot of shopping to do to determine that answer. And please be aware that any national referral service you see ads for on the television or Internet may only refer you to places that they are contracted with, possibly ignoring a wonderful community just minutes away from you.
You’d first want to look at your loved one’s personal situation, keeping in mind that this could change as their own health deteriorates. In a way, it’s like buying long-term care insurance. You have to project out a bit to determine what may be required and what they would be comfortable with.
The case for Independent Living
If a loved one is in great health now or even requires some care, independent living would be the best place to start looking. Go ahead, pick a community based upon the golf course or the fine dining. There, your loved one will fully enjoy the widest range of activities, services, and amenities.
Should needs change, however, they can always hire a personal caregiver to attend to their needs—just as they would do so in their own home. That’s their right.
In fact, depending upon how much care they need, this could be their best choice for quite awhile—perhaps even for the rest of their life. According to the Genworth annual cost of care survey, home care through an agency averages $135 a day—though they may only need a few hours of that care. As their care needs progress, they can simply add more hours to their schedule.
While home care agencies may say they have a set minimum of hours for which they will work, you may find that this is actually much more negotiable once you are living in an independent living community. That is because they may have other clients living in that community, as well. And it costs nothing extra for a personal care aide to walk down the hallway to check in on one more person or take on an additional load of laundry at the same time as another.
In effect, an independent living apartment will have become an assisted living one—without the need to downsize to a smaller apartment, leave friends behind and have fewer services and amenities. Until such time that the cost of the independent living apartment and the caregiver services combined exceed that of assisted living, this is your best option. Depending upon your need for care and the amount of time it is required, it may be even best to remain in the same apartment for the duration.
Eventually, should needs require, hospice could even come into an independent living apartment, as well.
The case for Assisted Living
Once one’s health and/or mobility have become severely compromised, requiring an extensive amount of care and assistance, they would probably be best served by looking at assisted living.
Yes, an independent living community may offer a wealth of services and amenities, but it’s time to face the facts. Your loved one is not going to be using those services and amenities. They’re only part of “the view.” And, unless they really want to pay extra for the ability to look at a golf course or watch residents board the bus for what would have been an exciting outing, the senior is there for the care.
Here, we’re talking about an amount of care that would make it uneconomical to pay a personal caregiver. At $135 for an 8-hour day, a personal caregiver rapidly starts approaching the cost of an assisted living community—many of which are going to be offering care 24 hours a day.
Yes, there will still be meals in a dining room and there will still be outings at an assisted living facility, but they will be geared to the care level of one’s limited mobility “neighbors”—not what the most physically able seniors wish to take part in.
If you’re considering assisted living, A Place for Mom maintains a website to determine the state-by-state overall quality of a community. Once you have narrowed your choices, however, the best way to make your selection is based upon the actual care that one needs. And that means interviewing the actual caregivers.
As John Gonzales of Senior Housing Forum, commented in 2013 (which is still true today), “The dirty little secret about our business is that, despite a company’s size, corporate mission, experience, capital resources, quality brochures and even flashy media, this industry lives and breaths based on the actions of a caregiver, making $11.25 an hour, doing the right thing at 3 am…night after night.”
He went on to note that, “I strongly advise my friends to request to meet with at least two of the community’s third shift employees, even if it means a late night visit. I implore them to meet the staff member who will be assisting with medications, assisting with baths and bringing your love [ones] their meals.”
In time, unless your loved one may have needs that can only be met within a skilled nursing facility, hospice could eventually come into assisted living, eliminating the need of any future move, as well.
In effect, the care a loved one receives as they journey along the gray mile (whether they’re in independent living or assisted living) depends upon the caregiver that is providing care, not the type of community in which they reside. Anything else is window dressing. And that all depends upon how much window dressing you’re willing to pay for.