I begin with a quote often attributed to Martin Niemoller, a twentieth century German theologian. It resonates with how and why I care about the issues of rights and quality of life for long term care residents…. people in small care homes, assisted living, and nursing homes.
First they came for the communists, and I didn’t speak out because I wasn’t a communist.
Then they came for the trade unionists, and I didn’t speak out because I wasn’t a trade unionist.
Then they came for the Jews, and I didn’t speak out because I wasn’t a Jew.
Then they came for me
, and there was no one left to speak out for me.
Yes, what gets straightened out for “our elders” does help “our generation,” but it is also simply right for our beloved elders and disabled – who are so lacking in energy right now, so vulnerable – to have people of energy care enough about their interests to show up, and speak up.
I write today because of a friend’s phone call. In her state, a retirement community is telling residents, including her friends, that some of them will be “allowed” in certain parts of the community only during certain hours. That is a general, if simplified, description of the problem.
This community calls itself a “Continuing Care Retirement Community,” which in that particular state, like some others, is just a “marketing term.” The state does not require the “community” to have a license, with associated disclosures of fees and required services. Assisted living or nursing home portions of the “community” must have a license and must comply with regulations…. such as federal and state regulations protecting resident rights. But in my friend’s state, the independent apartment building is, and must be, a separate business from the licensed, regulated, nursing home and assisted living businesses.
The residents in the long term care sections of the community were told recently that “some of them,” depending on how they pay for their care, will face new limits on when they will be allowed in the independent sections of the community – with its beautiful open spaces, fireplaces, and other amenities.
Just like any other apartment building or business, the independent apartment building has “private property” rights. The independent apartment building absolutely has the right to decide who is allowed on its property. That building’s managers have the same remedies as any other private apartment building – they can call the police if someone is trespassing. Maybe a police officer will write a citation! After enough times, a private business might get a “trespass order” against an “offender.” It happens all the time! But should it happen to elderly or disabled people who are paying $15,000 per month to live in the “community”? (How unfortunate it is that long term care residents paying “only” $15,000 per month might not be welcome throughout the “community” at all times!)
Calling the police is the means available to any private property managers to protect their operations against people they see as “trespassers.”
Using the staff and management of a licensed, Medicare-certified, skilled nursing facility, and a licensed assisted living facility, is not among the means available to a different local private business to enforce private property rights!
The licensed facility, and the licensed administrator, medical director, nurses, and therapists have plenty of obligations in looking after rights…… but the staff’s obligation is to promote the rights of the long term care residents, and not the rights of the local independent apartment building concerned about trespassing.
Try this metaphor: think about an independent apartment building a mile away from the licensed long term care facilities. Would a nursing home or assisted living facility use its management and staff to enforce the property rights of an apartment building a mile away? I doubt it. Just the opposite! If any long term care residents found themselves “unwelcome” in some business they have enjoyed, it would be the responsibility of the long term care facility, supported by state and federal advocacy organizations, laws, and regulations, to promote and protect the rights of the long term care residents.
Or, if a long term care facility’s residents are truly being stonewalled from a favorite local business that has been an important part of their quality of life, the long term care facility has the obligation to find a way to meet the psycho-social needs of these residents. (“Psycho-social needs” is the industry term for residents’ happiness and quality of life.) For management of a long term care facility to tell their residents “you can’t go to that business next door except during certain hours,” and then not figure out how to meet the quality of life need another way… that simply is not fulfilling the responsibilities of an organization that has a state license and maybe also the federal certification needed to vacuum money out of the Medicare entitlement system.
But the harm is already done. You cannot “un-ring” a bell. As one resident’s wife so aptly says, “who wants to be where they are not welcome?” And the long term care facility has already communicated, at least to some family members, that their loved ones are not welcome in certain places at certain times. Isn’t that intimidation, and a failure to promote and protect the rights of these beloved elders as Americans, who have the right to visit private businesses of their choosing?
On February 9, 2012, the New York Times online addressed this same discrimination in “The New Old Age” column. Apparently, this type of discrimination within retirement communities is becoming more common.
Our beloved elders and people with disabilities face exclusion and discrimination in too many places. In many private businesses, the remedies are hard to find. But, depending on state licensing laws, when long term care management says to its own residents, “you are only welcome at the business next door during certain hours,” THAT is something worth speaking up about. Our beloved elders and disabled in long term care do not have the energy to speak up right now. Some are too afraid of retaliation. They need their visitors, loved ones, and the general public to become informed about the rights of residents in long term care, about the types and quality of services required by federal and state laws, and to advocate on the residents’ behalf.
If you care about someone in long term care – an elderly or disabled loved one – I hope you will join the conversation.