How do I discover a name for a new blog?

Grateful for the space here that Deborah Drake has provided for not-so-reticent bloggers, I have drafted enough posts to have the confidence to think about launching my new blog on “a subject that is near and dear to my heart.” Which has become “a subject that I know something about.” The general topic area is “what the long term care experience is supposed to be like, vs. what many people are experiencing and putting up with.”

I do not claim to be “an expert.”

I am not a medical professional.

I am not a legal professional.

I am a loving friend and family member, an informed and caring citizen and consumer.

I like facts. I like objective information. I like informed opinions and well-developed arguments. But my heart is pretty loud, too, and will not be silenced and kept out of communication.

I am grateful for the ways my life has been enriched by being present with people whose lives have part of this landscape, either for a short while, or a long while.

I am a little outraged. I am a bit sad. I am hopeful. I believe that the energy and attention that has benefited rights in other arenas will benefit our beloved elders and disabled in long term care.

I wonder what would be an authentic and appropriate name for the blog that contains “that” voice? I will continue to ponder. Thoughts are welcome, even if those thoughts do not “sound like” a blog name.

Not every one of my posts in this space is on that topic. There were a couple other pieces of writing “I had to do,” and I published them here. When I am “blocked” by a little annoyance or outrage or sadness on any topic, … throwing it onto paper seems to get me unblocked. You may know the feeling. Thank you for reading.

Note: I return to this post to add that the March 6 session of Tuesdays with Deborah helps me toward an answer. I am grateful to all who were there.

How/why Discrimination can happen to long term care residents

Long term care is a service that is defined and governed at both the state and federal levels. So it is not the same in every state, and (sadly) the rights of residents in long term care are not the same in every type of long term care facility in every state. Residents of long term care can face discrimination, even within their own communities, as discussed in a previous post.

Most residential long-term care is provided in private businesses – for-profit and not-for-profit nursing homes, assisted living, and adult family homes. And in this nation, private businesses have private property rights. Think of an apartment building: people who lease apartments, and the guests of these tenants, have the “right” to be there. Everyone else can be considered “trespassers.” May seem “harsh” in this context, but “on balance,” “We the People” value private property rights.

State and community taxpayer-funded long term care facilities, such as county-run nursing homes in some states – these “public” places would have less flexibility to discriminate, just as public schools have little flexibility to discriminate.

But all long term care facilities, public and private, are required to have a state license to operate as a long term care facility. “We the people” in each state get to decide through laws and regulations our state’s definition of “long term care facility.” But within our state’s definition, every business that gets a license to operate in the long term care world is required to disclose all the services, and all the fees, and all the rules to potential residents and their loved ones, before admission and at least thirty days in advance, in writing, to current residents, before any change.

Here’s the catch: What is different from one state to the next is the definition of “long term care facility.” In many states, including Washington, a “continuing care retirement community” (CCRC) is not a licensed long term care facility. It is an independent apartment building, or residential community. And like any independent apartment business, a CCRC in Washington State gets to decide, under private property rights, who is allowed to be where. And there are residential communities in this state that limit, or prohibit, the presence of “higher care” residents in the beautiful spaces set aside for only the “independent” residents….. and for the sales department and the parade of “prospective residents” who might “buy into” only a vibrant, youthful community.

And because a CCRC is not required to have a long term care license in this state, it is not bound by the regulations that would require a licensed long term care business to disclose limitations like this – along with all services, fees, and rules – to residents before residents move in.

The next post will offer a few ideas about what residents in licensed long term care, residents in un-licensed residential communities, their loved ones, and consumers can do.

Discrimination against long term care residents… in OUR state?!?

“The New Old Age” blog, published in the online New York Times, recently addressed the subject of discrimination that exists against people with disabilities within their own retirement community in Virginia.

A follow-up story describes the management’s intransigence, and the growing public dismay.

Leona Rehm, who is a local business coach and person of wisdom, asked (paraphrasing):  “Could this happen in Washington State?”

The answer is: Yes, This Discrimination Can, and Does, Happen in Washington State.

“We the People” live in states that are United into a nation. Ever since the nation’s founding, a dynamic tension has existed between “state’s rights” and “federal rights.” In short, “We the People” recognize that some services should be governed and provided state-by-state because of differences in topography, resources, population and other characteristics. Other services should be governed and provided nationwide because it would be inefficient (too expensive) for states to create and govern the service fifty different ways.

“We the People,” so far, agree that long term care is a service that should be licensed at the state level, to honor differences that exist from one state to the next. The federal regulation comes into play because much long term care is paid for by Medicare, which is a federal program, and by Medicaid, a joint federal and state program. The federal Center for Medicare and Medicaid Services – CMS – says that it wants to pay a fair amount for the same high quality of care no matter where in the country a facility is located. Being “Medicare/Medicaid certified” allows a facility to vacuum money out of the entitlement program(s), and this privilege requires a facility to comply with numerous federal regulations, some of which prohibit discrimination.

So yes, the discrimination can happen in this state too, because of what “We the People of Washington State” have caused to be written into state laws and regulations. In the next post on this topic, I will offer a bit more about Washington state licensing of long term care, and its effect on discrimination.

“If you don’t like it, you can leave.”

Long term care facilities are simply not allowed to communicate this message to residents, and yet it happens all the time. Sometimes it sounds like this: “We have been in this business a long time. We know what works well for residents. You chose this place because of our expertise and your confidence in us. But if you don’t like how we do things here, maybe you would like to try someplace else.”

This is often the response when long term care residents or their loved ones communicate authentic and well-founded concerns about quality of care and quality of life. So residents and their family members “put up with” situations that are far below minimum acceptable standards.

Most long term care residents and their loved ones are under the mistaken impression that “the facility” gets to decide what happens, at what times, for whom, in cookie-cutter uniformity, take it or leave it.

A few times as a young adult, I “moved house” (to use a British expression) for reasons of career and personal preference. It was kind of an ordeal to relocate when I was young, healthy, and strong. Have you ever moved? Do you wish to do it again any time soon?

Imagine how our loved ones in long term care dread the thought of moving! They have already moved one or more times, parting with a lifetime of possessions, and maybe lifelong communities, in order to “downsize” into a long term care setting. These beloved of our community reside in long term care because they are already more or less dependent on others. They fear the words from facility staff,  “If you don’t like how we do things, you can leave.”

Most long term care residents and their loved ones do not know the importance of the numerous and powerful regulations that promote each resident’s right to stay in a long term care facility, and have that facility honor their personal preferences for schedules, meals, daily life, activities, possessions, and care.

Facilities do little to communicate to residents and families just how powerful the voice of the resident, family, and/or legal representative is supposed to be. Facilities do little to communicate to residents that the requirement placed upon facilities is to care for each resident as an individual, honoring and incorporating life-long and changing preferences for what daily life should be like.

“We the People” are so committed to the quality of care and quality of life for residents of long term care that we have caused to be enacted regulations that say something like this (in plain English): if the resident or resident’s representative “doesn’t like something,” the facility is expected to accommodate the resident’s needs and preferences.

The Language of Dignity

“We the People” have written for more than 200 years about the rights of all people. Many of us can “stick up for ourselves,” but we recognize that some people’s rights will be trampled without extra protection. “We the People” know that it is right to look out for the vulnerable – our beloved children, elders, disabled, veterans, and more. We look out for them through our actions and also through the laws and regulations we cause to be implemented. One long term care regulation says:

A facility must care for its residents in a manner and in an environment that promotes maintenance or enhancement of each resident’s quality of life…. and in an environment that maintains or enhances each resident’s dignity and respect in full recognition of his or her individuality.

Take note of the word “dignity.” What comes to your mind when you think of long term care residents and their dignity? (Write your response in a comment, if you wish.)

“Dignity” is a diamond with many facets. One facet is “the language of dignity.”

That language of dignity says, “Mary is a person who uses a wheelchair.”
The language of dignity says, “John is a person who seems to experience some cognitive changes.”

The language of dignity does not say, “Mary is wheelchair bound.”
The language of dignity does not say, “John is demented.”

The language of dignity puts the word “person” first.  Mary is a person. John is a person. Each of these people has many, many attributes. “Wheelchair bound” is not Mary’s identity; “person” is Mary’s identity. “Demented” is not John’s identity; “person” is John’s identity.

“We the people” are committed to the environment of dignity that long term care residents deserve, and we have codified our commitment into laws and regulations. We can also “walk the talk.” As individuals, we can adopt the language of dignity by putting the word “person” first when we talk about residents of long term care. And we can invite others into the process. When I hear anyone say “Mary is wheelchair bound,” I simply repeat, “Mary is a person who uses a wheelchair.”

The language of dignity can replace all labels. Do you ever hear that someone “is homeless….”, “is unemployed…..”, “is an unwed mother”? What do we hear about these people when we use labels? What do we hear differently when we put the word “person” first?

Are the elderly and disabled out of sight, out of mind?

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.