Laws that You Should NOTICE and CARE About

The title of this post is a play on words, but you won’t get it unless you read this entire thing. For a change, this attorney is going to be talking strictly about the law. Today I’m writing about some NEW laws that directly affect the community of older adults and their caregivers. I’ll try avoid the “legalese” to make it all more understandable (and not so boring) plus why, and how it affects you and your loved ones. The first law I’m going to share with you is the NOTICE Act. ”NOTICE” is an acronym (of course) that stands for: Notice of Observation Treatment and Implication for Care Eligibility. It’s a federal law, so it applies to anywhere in the U.S. But before I talk about the law, let me describe the problem it’s designed to fix… When you go to the hospital, if you have a heart attack, a stroke or a serious fall for example, you’ll likely find yourself in the E.R.   From the E.R. you get moved to a room. For two days, you occupy a bed, eat hospital meals, have nurses and aides bustle in and out taking vitals, giving you pills, and charting everything; they help you bathe, or shave; doctors order tests and x-rays or images; a doctor comes to see you every morning. Unbeknownst to you however, it’s quite possible that even though you are: receiving hospital care, from hospital staff, in a hospital room, laying in a hospital bed, eating hospital food, even wearing a hospital gown with your rear-end exposed – yet – you have not been “admitted” to the hospital. It’s true! Instead, you are there on “observation” and you are NOT admitted as an inpatient. I have seen patients in local hospitals on “observation” for as much as a week. Why does it matter? You’re getting all the care described above right? Well, let’s expand the story a bit…. After two days, the doctors decide that you don’t have a broken hip, or, that you had a stroke or heart attack, but you are stable now. You are weak, maybe have issues with balance, but you no longer need acute (hospital) care. However, they say you could benefit from physical therapy and rehabilitation. So they discharge you to a rehab center. You stay in rehab for a week to get your strength back and work on the balance issues. So far, so good. Two months later, you get a bills from the hospital and 7 days in rehab for tens of thousands of dollars. Shocked and dismayed you just can’t figure out why Medicare didn’t pay part or all of your bills. The hospital bill, while on “observation” is covered by Medicare Part B and only as outpatient services. Unlike Medicare Part A, which covers inpatient hospitalization, Part B has a sizable deductible and very likely co-payments for every doctor, test, pill or technician who touched or saw you while in the hospital.   Some of you may not have Part B Medicare and might be on the hook for the entire hospital bill. Worse, Medicare simply will deny payment for 100% of the rehabilitation unless you had a bona fide inpatient hospital stay for at least three days (not including the day of discharge). Observation days don’t count. That means that you might have been on “Observation” for two or more days, and then as an inpatient for just two, but without the required three day Inpatient status, there will be zero Medicare coverage for the rehab. You may want to know why hospitals do this. (if not, skip the next coupla’ paragraphs and read the good news about how the problem is being addressed). There’s a reason hospitals have adopted this observation status myth. The reason is that if they RE-admit patients too frequently, Medicare dings the hospital and takes back money they paid them for what Medicare thinks is too much ineffective hospital treatment. The theory is that if hospitals are effectively caring for patients, are reimbursed by Medicare for that care, then patients should not be going through a revolving door in and out of the hospital. In response to the re-admission penalties levied on hospitals, hospitals simply stopped admitting folks in the first place. Instead as described above they simply placed you on “observation.” When you later come back to hospital through the revolving door, you are not a “re-admit” – you’re either on observation again, or perhaps admitted for the first time. On paper. Here’s the rub. Hospital’s refusing to admit you so they can dodge the requirement to reduce re-admissions resulted in a situation where Medicare – instead of penalizing hospitals for insufficient care –are now was dinging (clobbering?) patients for the care and rehabilitation they desperately need. As if sick, frail elderly people needed more stress? The biggest problem of all was that patients and their caregivers had no idea what was happening until it was altogether too late. You found out only when the bills came! And even those patients who knew enough to inquire as to their admission status, found it extremely difficult – if not impossible – to pin the hospital down to tell you if you were an inpatient or on observation status. Enter Congress. Yeah, yeah I know. I can hear you groaning from here. But for once, they did a really good job. The NOTICE Act, first introduced in the House in February of 2015 sailed through both chambers and was signed by President Obama on August 6th of 2015 to become the law of the land. In short, the NOTICE Act, require[s] hospitals to provide certain notifications to individuals classified by such hospitals under observation status rather than admitted as inpatients of such hospitals.” (You can read the entire bill and the Congressional Research Service Summary here.) The details of the law are great. It requires hospitals to provide this notice to all patients that are there on more than 24 hours of observation status, the notice must be a written and oral explanation of their status, in a way that you understand and they have to explain the consequences of that status (see above!). Never the less, it will probably be a while before hospitals step up to this requirement. If you or a loved one lands in the hospital and you find yourself in a room, or in the E.R. for more than 24 hours, ASK what your status is. They have to tell you. Meanwhile in VIRGINIA, there’s a new law on the books that attempts to help slow down that revolving door that so often results in return trips to the hospital. Initially called the CARE Act but now enacted in the Virginia Code as § 32.1-137.03. Discharge planning; designation of individual to provide care (you can read the entire law here). This law (enrolled July 2015) is designed to force hospital discharge planners (they used to be social workers) to provide critical information to the family or designated caregiver and allows caregiver to ask questions and receive training so have the tools needed to see to the necessary follow up care. This must take place before the patient is discharged. I cannot tell you the countless number of times I’ve encountered elderly patients, too sick and completely overwhelmed to have any understanding of what’s happening to them when hospitalized; Likewise, family members are completely dazed, emotionally drained, on edge and not truly understanding a darn thing that’s happening when a discharge planner calls them to tell them “we’re discharging your mom this afternoon.”   Then they are given a pile of papers to sign (which they do not have time to read, much less understand), mom is loaded into a wheelchair and off they are pushed to the revolving door out front. Small wonder, when Mom or Dad are not adequately cared for at home – for instance a medication error is made, a missed appointment for needed tests or therapy results in another trip to the E.R – yep, yep, yep. A “Re-Admit” and back through the revolving door of the hospital (see above). When the family or paid caregiver makes such a mistake, it’s hard to blame them. They have a pile of unintelligible discharge paperwork that they didn’t understand at the time, and they don’t remember what (if anything) was said either. They are still tired and stressed. The CARE Act was designed to address this problem by sending patients home with a properly informed caregiver who has all the information and ability to carry out needed care tasks. Key elements of the law (notice the placements of “must” “shall” and “will” – they got to do it!): Each hospital inpatient can designate someone who will care for, or assist the patient in his/her residence (home, not another hospital, rehab or nursing facility). I will call that person the “caregiver” though the law refers to them as “designated person”. The hospital will consult with the caregiver regarding his/her ability to provide the care, treatment, or services. The caregiver’s name and contact information is charted at the time of admission. The patient can change the caregiver at any time and the hospital must chart it within 24 hours of the change. The hospital must give information regarding the patient’s discharge plan and any follow-up care, treatment, and services the patient requires prior to discharging the patient. The hospital must provide the caregiver the opportunity for a demonstration of specific follow-up care tasks that they will need to perform based on the patient’s discharge plan before the patient’s discharge They must also have an opportunity to ask questions regarding how to perform care tasks. Hospitals must communicate this information in a “culturally competent manner” and in the caregiver’s native language. The hospital shall notify the caregiver of discharge and shall provide the caregiver with a copy of the patient’s discharge plan and instructions and information regarding any follow-up care, treatment, or services that caregiver may need. The discharge plan shall include a description of the follow-up care, treatment, and services that the patient requires; that must include contact information about any health care, long-term care, or other community-based services and supports to carry out the plan. This new law, which we’ll call the CARE Act, is a basis for holding hospital discharge planner’s feet to the fire. Their job can no longer just be a matter of filling out forms and shoving patients out the door. They must now ensure that discharged patients and their caregivers have the necessary information and tools to make sure their patients can go home and get better. Together, these two laws are tools we can use to make sure you get the care you need during and after a hospital stay and ensuring that Medicare will properly put the emphasis on hospitals to provide quality care so that we can stop the revolving door. I hope that’s made some important new laws understandable for readers who are “frequent flyers” at hospitals and that is most of my elderly clients. For now, that’s enough law from this attorney. Stay safe and healthy!

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Nursing Homes, Assisted Living or…some alternative?

Multi-generational alternatives benefit everyone.
Multi-generational alternatives benefit everyone.

I’ve written a lot about the process of choosing an Assisted Living or a Nursing Facility or other alternatives. Actually what I’ve typically written about is the lack of choice we have in such matters and that most of us arrive at that weigh station through a medical crisis with a parent or loved one and our choices have become quite limited.

I’m sure many people don’t even realize there are alternatives to these options. I’m going to talk about several. These options exist or are in the works here in the Charlottesville, Virginia area or nearby. Many of these also exist in other communities or are being planned, so it is worth checking out even if you are living somewhere else.

Many of us are graced with the presence of an aging parent or other relative living in our homes.  Or, if they are able, perhaps still in their own homes. Some of them are able to care for themselves and others need constant supervision  and assistance 24/7.   The first and sometimes only option considered by most, especially if they must work outside the home, is home health or home companion care.  If you can afford it, that’s a great solution. However, agency personnel can be quite expensive with costs ranging anywhere from $ 18-30 or more depending on the type of service you need (or combination of services). The types of services are typically: Companion Care, someone to cook, do light housework, watch over someone to ensure they safety, give reminders for medications, perhaps do errands or drive for you:Certified Nursing Assistants (CNAs) can assist with bathing, dressing, shaving, feeding, toileting and the like, in other words, “personal care”  and then there are fully trained, professional nursing care, such as LPN’s or RNS and therapists such as physical, occupational or speech therapy.  Different agencies provide different levels of care and some may overlap. For example, the national company (generally locally owned and managed franchises), Interim Healthcare provides all sorts of medical personnel from therapists to CNA but no companion care.  Another nationally franchised company with locally owned offices is Home Instead which provides home care including CNAs plus companion care but no other medical professionals. Also worth noting is that most agencies have a minimum hourly assignment, typically 3 hours. As you can see this can add up very quickly.

You can also hire non-agency, non-certified, non-regulated assistance.  While this tends to be cheaper, it is also a much riskier proposition. Agencies are required to do background checks (including criminal background and sex offenders). This is not easy information for most private citizens to acquire.   If non-agency caregivers are licensed – for example a CNA or LPN – they should be able to present you with their credentials and hopefully, references. You can also check their license against online databases (in Virginia and most states) to make sure they are genuine and you should verify all references. On the flip side, freelance caregivers, because they are unregulated, are able to do more without worrying about the credentials. So a single caregiver could do both the companion work and the personal care piece for a single lower hourly rate. Private rates can run anywhere (in the Charlottesville area) from $14 upwards.

How does one pay for all this? If you’re lucky, your elder invested in a long term care (LTC) insurance policy that covers home care.  Barring that, most will expect you to pay privately. In some cases – for example after a hospital stay and with a doctor’s order – Medicare may pay for care and even therapy in your home. This is a great way to avoid “Rehab” – a nice word for a nursing facility stay though typically not permanent.  In other cases, particularly low income cases, you may be eligible for an Elderly or Disabled with Consumer Direction waiver orECDC Waiverfrom Medicaid. One advantage to working with an agency if that they typically have staff that will work with you to help figure out the financing of care.  If your elder is a Veteran who served during a “time of war” (not necessarily in “combat”) they may be eligible for cash assistance from the Department of Veterans’ Affairs (VA) known as Veterans Pension and “Aid & Attendance.”

As you may have concluded by now, home care can be a pretty daunting and expense challenge both to manage and for which to pay. What other alternatives are there?

Another reasonable alternative for many working adults with elderly parents or others needing care is Adult Day Care.  The most prominent agency providing daycare programs in Charlottesville is JABA.  JABA offers a caring and safe environment for any adult (18 years +) who needs assistance with daily health or personal care activities and would like to engage in activities with other adults. JABA specializes in the care of adults with dementia.

Temporary or short term Home Care and Adult Day Care are also excellent opportunities for family caregivers to simply take a break and tend to their own needs for rest, recreation and relaxation.

There are two recent, very exciting developments that have come to Charlottesville!

The first, all ready up and running and signing up participants even as I write, is the brand spanking new Blue Ridge PACE which stands for Program of All-Inclusive Care for Elderly.  PACE is a collaborative effort between UVaMedicalCenter, Riverside Medical and JABA – our local Area Agency on Aging. PACE programs are operating all over the country and proving a very successful alternative model (they’ve had one in Lynchburg for a couple of years. Its associated with the Centra Health group).

PACE programs literally provide all the services the elderly need under one roof – or under your roof. Doctors, nurses, social workers, activities, day programs including breakfast, lunch and snacks, pharmacy, transportation, physical/occupation and speech therapy and more – all in one place. You must be a “dual eligible” (Medicare/caid) and over 55 to participate. You may also “join” and pay privately for membership (e.g. not Medicaid eligible) paying a flat fee for membership and using all services.  They deliver services both in their new facility at 1335 Carlton   Ave and in your home. Even if you need to have an in-patient stay at a rehab facility following an illness or surgery, your stay there is covered by your PACE participation.  Sounds too good to be true doesn’t it? Well, time will tell. but I am very excited about the prospect for Charlottesville seniors.  I hope you’ll take the time to stop and visit them and ask for a tour.

There’s another interesting project underway, this one a little further out in terms of its availability. It is called CharlottesvilleVillage.  This concept allows seniors with varying levels of need for assistance to stay in their own home and to – collaboratively – design the kinds of services they need to remain independent. Whereever possible, these services are provided by volunteers from within the community. For a good look at how a “Village” works, take a look at the recent PBS documentary on the subject, titled “There’s No Place Like Home: Seniors Hold on to Urban Independence into Old Age”  If you’d like to find out more about the Charlottesville Village project, you can visit their facebook page here.

Finally, for those seniors for whom living in their own home (or yours) is truly no longer an option and some sort of institutional care is the only route left, there is one more chance to avoid the traditional “medical model” we all hate.   It is called the Greenhouse Model and it has nothing to do with ecology or saving the earth. Except in a psychic sense!  The Greenhouse Model is also sometimes referred to as the “Eden Alternative” and was first conceived and brought to life by a doctor, William H. Thompson, in 2003. He decided to redesign long term care from the ground up.  Since that time, Dr. Thomas created The Green House Project a national non-profit organization dedicated to creating alternatives to traditional nursing home care. The project creates “caring homes for meaningful lives” for elders where each has a private room and bath, can move freely throughout the home, build deep relationships with each other and participate in preparing their own meals. It is based on a philosophy designed to reverse “enforced dependency” in a traditional nursing home by creating small intentional communities of 7-10 residents created to foster late-life quality of life and continued intellectual, emotional and physical stimulation and health.

Unfortunately, Charlottesville does not yet have a Greenhouse Model project (yet! Its my dream to bring one here!) However, they do have one just over the mountain in Harrisonburg. The Virginia Mennonite Retirement Community (VMRC), a 750 bed “Continuing Care Retirement Community” nestled in the Shenandoah Valley recently opened a Greenhouse community. While I’ve not had a chance to go see it myself, I’ve heard – from very reliable sources – that it is indeed a dream come true.

I’ll continue to explore the possibility of opening a Greenhouse Project in Charlottesville (the initial barrier is a licensing issue, but that’s another blog post and too boring). In the meantime, I just wanted to let people know that there are already several viable alternatives to traditional Assisted Living and Nursing Care facilities and that you should look into them before making any decisions.

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“Choosing” a Nursing facility- troisième partie

It’s been more than a week, I know. Things got a bit busy and since I am chief cook, bottle washer and everything else around this office, I have to set some priorities. Blogging is way down the list when clients are demanding my attention. Would you want it any other way if you were my client?

Well, let’s return and see how Mom has fared in the nursing home shall we? When I left off in my last post, Mom had just been “de-certified” from Medicare and moved to “unskilled” nursing bed.  She is no longer receiving intensive therapy.

As the days and weeks go by, Mom becomes more depressed and hopeless. She seems dull and lifeless. Even her hair is limp and lifeless. When you visit she is often still in bed even though it’s the middle of the day. She’s not had a bath or brushed her teeth even.  When you visit she is both irritable and angry, or cries and begs you to take her home. Visits become something you dread.  More and more your visits are shorter and farther between.

One night, you get a phone call from the nursing home. Mom has taken a fall and hit her head. They think she’s okay, but it’s the nursing home’s policy that anytime someone falls and no one sees it happen they must automatically transport them to the E.R. to have them checked out.  At the time of the accident, your mother was in pain, confused and panicked. As the EMT’s arrived and tried to put her on a stretcher and into the ambulance, she started to shout and became combatative. In order to safely transport her, the  EMT’s needed to calm her down to prevent her from hurting herself (or them) so she is given a powerful tranquilizer and immobilized onto a stretcher.

Before you are able to arrive at the hospital, Mom is taken for an MRI. She is placed on a moving table and strapped down, then she is  slid into a large cylindrical machine for 45 minutes. The machine makes all manner of very loud clanking, buzzing and ringing sounds while disembodied voices tell her to lie perfectly still. She comes out dazed, completely disoriented and not sure where she is or what is happening.  It’s now 3 a.m. and the doctor decides to keep her “for observation.”  They give her a drug that is meant to help her regain herself, an antipsychotic called Seroquel.  It also acts as a sedative and knocks her out for the night.negative effects antipsychotics

The next morning she awakes and you are at her bedside. She has little or no recollection of what happened or why she is there. The doctor says she may have a concussion and wants to keep her for another day. She complains of pain in her hip and has severe bruising on her face.  The last thing she remembers is at the nursing facility. She recalls ringing the call bell repeatedly for assistance to go to the bathroom. She says that no one ever came and her need became so urgent that she decided to get up herself rather than wet the bed. She thinks she may have had an accident on the floor and may have slipped on the wet floor. She must have fallen then. She recalls nothing else.

Meanwhile, back at the nursing home, the business office tells you that if your mother doesn’t pay for her bed, that is, put  a “bed hold” on it,  they will discharge her. With mother in the hospital again, your boss complaining that you’re taking too much time off, and the kids needing picked up from school,  you can’t worry about this and set that aside so you concentrate on the urgent needs like the kids and mom in the hospital.

As it turns out, Mom has only bruised her hip and does have a concussion but its mild.  However, the neurologist who treated her after the MRI of her head has also diagnosed her with vascular dementia (brought on by mini-strokes) which, while relatively mild now, will get worse over time. She ends up staying one more night in the hospital under observation.

The discharge planner comes around the next morning and starts discussing plans about where to send mom now. Come to find out that her bed at the nursing facility is now gone. Her belongings have been packed up and stored. She was “discharged” from the nursing facility to the hospital.  However, the hospital never “admitted” Mom as an inpatient. She was only there on observation.

While this may seem to be mere bureaucratic technicalities,  they have very significant consequences.

To discharge your mother to a nursing facility now means that she will NOT be eligible for Medicare for any rehab because she did not have the requisite 3 night inpatient stay  she was merely there on observation..  Mother’s resources are nearly tapped out for privately paying for long term care. She has no long term care insurance. No Veterans or other benefits. That leaves very few options. In such cases, the only choice may be to find a “Medicaid” bed.

Medicaid rates (the rate at which Medicaid reimburses a nursing home) are substantially lower than the private pay rates. If a person comes into a nursing facility while eligible for Medicare treatment, the reimbursement rates are higher.  But if a person has fewer resources and will be quickly dependent on Medicaid – public assistance – most nursing homes are reluctant to take them.

Nursing homes typically want to bill every penny they can to Medicare or other 3rd party source (supplemental, long term care insurance etc.) and/or if they can, they want the person to privately pay (out of their own pocket).   These sources are usually quickly depleted by the monthly rates which average about $7,000 a month.

In your mother’s case, she used Medicare in her initial admission following the stroke, thereafter, she paid from her own funds but now that money is almost gone.  Had she stayed where she was, she would simply have depleted her resources and an application for Medicaid would have been filed and she would have stayed right where she was.  But that didn’t happen – instead she was discharged from that nursing facility.

The hospital’s discharge planner begins seeking a facility that will accept a Medicaid resident from the outset – no private pay, no Medicare billing. Almost all nursing homes are “dually certified” – that is, they accept Medicare and Medicaid patients. However, many of them limit the number of beds available to Medicaid patients. There is a therefore a shortage of certified Medicaid beds and the need is great.

But the discharge planner manages to find a bed for your mother after you indicate you can pay their private pay rate for two more months. So off mother goes to a new nursing facility. She is discharged from the hospital (to which she was never actually admitted!)  and transported to the new facility.

Along with the little ditty bag of stuff from the hospital she carries is a discharge order and a list of medications. The med list now includes some things that were not on her regular regimen before. Among them are the antipsychotic medication, Seroquel.  You notice that mom is much more agreeable, calmer and sleeps a lot more.  That seems helpful to you.  What no one notices is that Seroquel – and most of the other medications of this sort – carries a specific “black box” warnings about use in older adults.  The warning reads something like this:

Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death. Seroquel is not approved for the treatment of patients with dementia-related psychosis

There are many potential negative side effects listed as well. Among them, are the increased risk for falls.

However, in a nursing home, the drugs are not administered in the same form we get them from retail pharmacies. Nurses never see the box or bottle the drugs come in, or the sheaf of fliers that come with them. Nursing facilities get “bubbled paks” for each patient from their own pharmacy or contracted pharmacy. So they never see the warnings.

The new nursing home is older, the carpet worn and dingy, the furniture nicked and upholstery faded. The walls are painted a dull blue and stained and marked up.  It’s noisy, smelly and the only activity that is available on a regular basis is a big tv blaring very old movies and bingo every afternoon. The hot food is served on ice cold dishes and the cold food —  iceberg lettuce masquerading as salad, jello, sherbet, cottage cheese and the like —  is served on steaming hot dishes. Everything is stewed or looks like its stewed. All of the food is either over-salted or completely tasteless.

Mom is very complacent though. She sleeps a lot but doesn’t complain much. She has a lot pain so whenever she asks for it, they give her a narcotic painkiller for which her attending physician has written a PRN order or “as needed.” She is also labeled “high risk for fall” so she is no longer allowed to stand or try to walk and is restricted to a wheel chair and completely dependant on nurses aids to transfer her from bed to chair or chair to toilet.  Her lack of activity and complacency about the food means she as begun to put on weight. She eats and snacks on sweets at every opportunity. To please her, you bring in more such treats when you visit.

The nursing facility is trying to turn a profit. They are limited by the fact that so many of their residents are Medicaid payors only. So, even more than any other nursing facility, such nursing homes attempt to make money by reducing expenses. The biggest expense is staff. They keep staffing levels so low that only the barest of care is able to be provided.

Lately, your mom has been having “accidents.” You mom is not incontinent. She can control her bladder fine but, because she must wait for aids to assist her to get to the toilet on time, she is wetting herself and the bed. Soon she is labeled “incontinent.”   Rather than get her on the toilet on a regular interval, and unwilling to regularly change her and the bed, the aids now put her in an adult diaper day and night. Your Mom has become very docile and complacent on the drugs therefore they have no sense of urgency to see to her, she rarely rings the call bell anymore and never yells as she used to – she sometimes lays in a wet diaper for hours.

A year has come and gone since Mom first had her stroke. Mother’s Day is coming. You decide it would be a good idea to take Mom out for an outing, have a change of scenery, get some fresh springtime air.  When the appointed Sunday arrives, you stop for some flowers at the grocery store and go to the nursing home early to help get Mom up and dressed.  The aid has arrived to get her out of her diaper while you choose something nice to dress her in. Together, you and the aid turn her to sit her up and put her clothes on and to your horror you see large, gaping, raw sore on her tailbone.  It is the size of coffee coaster, red and angry looking, seeping fluid.

Thanks to the lack of repositioning or movement, the constant weight on her backside, the skin breakdown from the urine and lack of cleaning or moisturizing of the skin, your mother has a giant bedsore.

This is completely preventable. Bedsores,(also called “pressure ulcers”) except in very limited circumstances, can be avoided by good skin care, repositioning and constant attention and inspection. Mom obviously has received none of this.

You race down to the nurses’ station and demand to speak to the unit manager. You raise holy hell. The Unit Manager, while sympathetic, is distracted by 3 phones ringing and several call bells going off, nods, says they’ll look into it and blows you off.

Monday morning, you call the director of nursing for an explanation. You leave three messages; all go unanswered.  You call Mom’s attending physician’s office. They tell you they will send out the nurse practitioner to have a look and will call you back.

What are you to do now?

 

Tune in for Part IV!  In which we explore the resources available to help you advocate for Mom.

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“Choosing” a Nursing Facility Part Le Deux: They tried to make me go to rehab but I said ‘no, no, no’

Patient wearing respirator
How we left mom at the nursing home last week….

Last week, I wrote about how it is that we really have very little to say in the matter when the decisions are made about taking our aging loved one to a nursing or rehabilitation center when they have a serious health issue arise.

In fact, there’s plenty we can say and do, it’s really about knowing in advance that you have plenty of choices, that you could and should ask many questions and offer input into the healthcare decisions of your loved one. Unfortunately for most of us, these decisions are made when both our loved one and we, as caregivers and family members, are completely depleted – physically, mentally and emotionally.

At the conclusion of the last segment, we had arrived at the “Health & RehabilitationCenter” and Mom had been admitted.  Let’s revisit the “Rehab” and see how Mom’s getting along shall we?

So let’s say, a week has passed. In that time, the staff of the nursing home – nurses, social workers, recreation/activities, physical, occupation and speech/language therapists, (pt, ot, slt) nutritionist or dietary and so on – have all had a chance to do their part on a “baseline” assessment which is done for each and every patient who goes to a Medicare/Medicaid qualified nursing facility (that would be most, not all, there are a very few exceptions). This is called the “MDS” assessment or “Minimum Data Set.”  Medicare and Medicaid keep careful track of every patient and it is from these assessments that

a)      Billing is done for Medicaid

b)      “Quality Measures” are assessed by Medicare.

The first is pretty obvious – Medicaid pays for certain things at certain rates and MDS codes tell them what to reimburse.

The second might seem a bit more mysterious until you understand that nursing home staff are required to continuously update their assessments so that changes are documented for every resident at regular intervals. For instance, if a patient arrives and on their initial MDS assessment, they report no pressure ulcers (bed sores) and 90 days later, the same resident now has bed sores, there has been an decline in the quality of care.  If patients report chronic pain and classify it as a “number 2” on a scale of 1-10, but it gets worse, say the patient later takes a stronger painkiller and self-reports his pain is now a “5” – that too is reported. Things like Urinary Tract Infections (UTI), occurrences of Depression and other things are also carefully monitored. This set of statistics forms a picture of the “quality” of the care patients are receiving at any given facility.

This information is also readily available, to the public, online – for free! You can access it by using the 5-Star Quality Rating System provided by the Center for Medicare/caid Services (CMS).  There’s a very readable set of documentation available on what it is and how best to use the system (click on the link). You can search for data on a particular facility or compare several facilities at the Five Star Rating System. (click on the link). You can also see reports on staffing levels and recent inspection reports (“surveys” in nursing care parlance) including the actual reports of problems as cited by the surveyors.

So your Mom has now been “MDS” assessed and from that a “Care Plan” has been designed in conjunction with her care team.  First up at bat are likely to be the PT/OT/ST team who will try to get Mom into as much therapy as possible. She will have been assessed and orders written by her physician to try to get Mom to the “least restrictive alternative” for her care – that means discharged home, discharged to another facility such as an Assisted Living or to a “unskilled” nursing facility.

Lets say Mom has had a stroke and is “hemispherically” (one side, lets say left) impaired. She has trouble walking, talking, seeing, swallowing and doing most everything that engages her motor system on the left side. She also suffers from some “aphasia”  – that’s a condition where, due to the damage caused by a stroke (in this case) the person  may make mistakes in the words they use, or perhaps using the wrong sounds in a word, choosing the wrong word altogether, or putting words together incorrectly. Its a problem not of motor skill, but of the brain’s ability to handle language and communication. Your mom’s case is not bad and the SLT thinks they can correct it with some intensive therapy.

So your mother’s days are full up with intensive therapy to help her physically – to strengthen the weakened and impaired left side, and to work on balance; in Occupational Therapy – to help her figure out new ways to do tasks that she used to do without a thought: putting on her socks & shoes, getting things down from the pantry shelf, dressing, bathing and getting on and off the toilet by herself. Then hours of very intensive therapy to improve her swallowing and language. At the end of each day she is exhausted and discouraged. When you come to visit at dinner time she is depressed and irritable. She hates the semi-liquid food she’s given because of her impared with swallowing. Her roommate (she can’t afford the upcharges for a private room) watches TV all day and all night at full volume and with the lights on. When she finally does fall asleep, she is awakened by the constant noise from the nurses station down the hall or someone coming to draw blood or check on her roommate. You try to cheer her up by reminding her “its only temporary Mom, you’ll be going home soon.”

Nursing home mom
Mom’s a bit irritable, hopeless and depessed now.

Won’t she?

Well she has 100 day right? That’s what the hospital caseworker said, “Medicare will pay for Rehab for up to 100 days.”  Yes, that’s what they said. Note that it is “up to” 100 days. And she didn’t say that Medicare would pay for ALL the charges. Indeed, right around day 20 you will start hearing the Administration of the facility start making noises about “discharge planning.”  What?  Mom is ready to come home?  Well, not exactly. They don’t necessarily mean discharging Mom home. They mean discharge from therapy, or more accurately, discharge from “Skilled Nursing.”  Again you say, “what?!”

There’s a fly in the Medicare ointment. And it has little to do with your mom.  It has to do with Medicare’s reimbursement schedule. What they actually pay – at 100% reimbursement – is the first 20 days  of rehab. After days 1-20, you pay a co-pay (depending on whether you have traditional Medicare, or an Advantage plan – all of these are moving targets, but basically it comes out in the end).  On days 21-100 you’ll pay $144.50 “co-pay” each day and Medicare picks up the rest.

(By the way, if you find yourself in the hospital in advance of such a situation, one critical question to ask is if you’ve been “admitted” to the hospital as an inpatient. Well of course you were admitted! You were there for 4 days!  Except, today, hospitals routinely bring patients in on “observation” and in fact, unbeknownst to most,  they are not admitted as inpatients.  To go from a hospital to a skilled nursing, or rehab facility and have Medicare pay for it, you must have been admitted for a three inpatient day stay, not including the day you leave. What if you were on ‘observation’ on day one, stayed two more days as an inpatient and left on the fourth? No, Medicare won’t pay for your rehab because you only had a two day inpatient hospital stay. Sneaky huh?)

Most nursing facilities know perfectly well that most of us can’t afford to self pay from our own pockets for rehab. So, ready or not, they’ll begin making noises about “de-certifying” Mom from rehab because they don’t believe she can pay. Will they ask you about it? No. If there’s no second payor insurance (e.g. a private or supplemental policy that picks up where Medicare leaves off) they will start making noises such as, “your mom is no longer getting better” or “your mom doesn’t seem to be motivated in her therapy anymore” and the next thing you know you’re either frantically making plans to put mom elsewhere – your house, an assisted living, home with a home health agency coming in – or heaving a huge sigh of relief when the social worker at the “Health and Rehab” Facility offers you the option of simply moving mom to an “unskilled bed.”  There she’ll be taken care just as she has been all along (for better or worse!) but without all the pressures to participate in therapy to get her back on her feet. Indeed – she might be very hard pressed to get any therapy at all. Often we hear about “restorative therapy” that is meant to keep residents from losing whatever physical gains they’ve made. (notice they are now “residents,” no longer “patients”). Generally, that will consist of a Certified Nursing Assistant (CNA) walking with a resident and perhaps doing some mobility work with them (manipulating arms in legs in bed or shower).

Mom has now gone from a temporary “Health and Rehabilitation” patient, to a full-time, long term care resident.  And if you think she was unhappy before, wait until you see what starts happening next!

Tune in next week, same time, same place….. for Part III – “Choosing” a Nursing Home

 

 

 

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“Choosing” a Nursing Home? Bwah-ha-ha-ha-ha!

Lately, I seem to see lots of articles, blog posts and general hot air on “choosing a nursing home.”

hotel check in is not a nursing home
Expectations about checking in to “Rehabilitation Facility”

Bad news for most of you. Very unlikely you’ll get much choice in the matter. I don’t recall ever seeing people walking through the front door of the lobby, followed by a bellcap with their bags as they “check in” to a nursing facility.

No. Here’s how it generally happens:

An elder person has some kind of serious medical issue that lands them in the hospital: a stroke, a fall that breaks a hip, a bout of pneumonia, major surgical procedure or any number of other common but very worrisome things.  When the crisis is past, there remains a period of rest, recuperation and typically, rehab.

By this time, if they have family, they have all gathered round and different people have different ideas about how to care for mom or dad. And what I call the “sandbox issues” have begun. Brother Tom thinks mom should come home with him where his wife (who mother doesn’t much care for) will take care of her til she’s back on her feet. Sister Sue thinks Mom should go to rehab then an Assisted or Independent Living Facility (ALF or ILF) because she obviously can not take care of herself anymore. Baby sister Cindy thinks with a short stay at rehab Mom will be her old self again and can safely go home.  They begin to argue amongst themselves and all the ancient tensions of “mom always loved you more” began to re-surface.  I can assure you that none of this is helping Mom to recuperate.

In the meantime, in some back office, a hospital administrator is squawking at the discharge planner (another name for a caseworker or social worker) that she needs that bed. That beds got to be emptied. Why? Because Medicare will only pay for ‘x’ number of days following (surgery, stroke, whatever) and her x number of days are about up. It doesn’t matter that they aren’t managing her pain well or that she’s not healing as quickly as another might. The formula says x days.  And ‘x’ days is going to be all she gets. (They seem to assume that no one can afford to pay for hospital care privately. And that’s true, most of us can’t, which is why we have insurance)

So, here comes the discharge planner into the wasp’s nest that Mom’s room has become with all the siblings gathered round.  Discharge planner comes armed with a pile of paper including one that lists all the home health, skilled nursing/rehab (NFs) and even hospice agencies in a five county area. By giving you this incomprehensible list, she can say she has informed you of your choices. She tells you that she’s found an available bed for your mom in Acme Rehab and that discharge to Acme is scheduled for tomorrow as soon as the doctor writes the order.

Kids are non-plussed and immediately set aside their ideas (for the time being until “I-told-you-so time comes around) and begin to organize around the decisions made for them all (with little or no consultation with Mom). Discharge planner tells you about the rehabilitation professionals and equipment in the Acme Rehab and how great it is and how quickly Mom will be back on her feet.  No one asks any questions, or goes to visit Acme. They start packing up Mom’s nighties and toothbrush preparing for the glorious migration to rehab tomorrow.

In the morning, after a long wait for the hospitalist to make rounds and write the discharge papers, nursing staff to do their thing, you have Mom put on a gurney and transferred by medical transport (another name for an ambulance) to Acme Rehab.  In the meantime, because you think you’re leaving any minute, Mom misses bath, breakfast & medication.

When you arrive at Acme, Mom is wheeled into the facility still strapped to the gurney.

Patient wearing respirator
What mom will probably look like arriving at the nursing facility… ooops “health and rehabilitation center”

All she sees on the way in the building is the ceiling and light fixtures and the chin of the guy who hasn’t shaved for several days and the overhang of his beer gut while pushing her down a rather smelly hallway. Food smells and um, worse smells, assail their forward progress. Medicine carts, food carts, laundry carts, block the halls or rattle past. The gurney takes a sharp turn past a nurse’s station where several people in scrubs are talking on the phone, writing in charts, dialing the fax machine and basically impervious to the person flying by on the gurney.

You, in the meantime, have been ushered into the business office or admissions and are seated at a table across from a new face. There’s a stack of paper in front of them and a couple of pens. This person smiles ingratiatingly, turns the stack to face you and pushes it across toward you along with one of the pens. He or she starts flipping through the pages and ‘explaining’ at warp speed what they are. Periodically they put the pen in your hand to have you sign something. And, obedient child that you have momentarily reverted to, you acquiesce.

Meanwhile, in your head, all you’re hearing is the sound like Charlie Brown’s teacher in the cartoons “Mwah-mwah… mwah mwah, mwah mwah. Ok? “  “Sure, yeah, okay” as you sign the last page.  Also running through your mind is, “Where have they taken Mom?” “Is she going to be okay?” “She didn’t eat anything this morning” “Did we get the discharge orders from the hospital?”I have to call Mom’s brother Ike and let him known she’s here”  “Have we made the right decision” (when you should be asking, “Did WE make a decision at all?”

Of course, if you heard anything at all from the admissions person or saw anything that you signed, you are extremely unlikely to remember it even a few hours later. And where did you put that copy they gave you?

How do I know? Because, when family members come to me and ask me to represent them and I look over the contract they brought with them,  I ask them, “do you know you agreed to ….?  (pick any number of things). They give me shocked look and say “I never….?” And I hand them the contract, point to their signature and confirm that it’s theirs. No one remembers that they agreed to a whole host of things – as just a few example, they contracted  to:

  • waive      the right to sue the facility in court.
  • use      arbitration instead with the nursing facility’s chosen arbitrator;
  • to be “R.P.”      or “Responsible Party”
  • as RP you      agree to pay the bill if Mom can’t (this is not legal, not under Federal      Law or under Virginia Law and you can not agree to it)

Could this have been avoided?

Yes, and more importantly, it could have been avoided at several points:

1)      They discharge planner doesn’t decide where your Mom goes. Your Mom does. Perhaps with your assistance. She also has the right to refuse “the first bed available” and the right to weigh many options. Handing you the list of agencies and options only technically meets the mandate caseworkers have to inform patients of all the options before them. Mom could have gone home with an order for home health and physical therapy. Or she could have gone to outpatient therapy, or she could have gone to any number of facilities.

2)      You do not have to vacate a hospital room because a discharge planner says so. You have to be prepared to pay for it or arrange for payment, but before making a decision, someone should have visited the nursing/rehab center to make sure it was up to snuff. You can check out nursing facilities through Medicare’s “5 Star Rating System” first to narrow down the acceptable options. Since Medicare regulates nursing homes, they collect extremely detailed data, including staffing levels, quality measures and inspection reports – all of which you can look at online. They put it in pretty accessible form to make that easier. (see  http://www.medicare.gov/nursinghomecompare)

3)      Upon arrival at any facility, the emphasis should be upon getting Mom settled into her new surroundings. She is probably scared, in pain and unsure of what to expect next. All the paperwork and contracts can wait. And the contract does NOT need to be signed right now by anyone, not you, not your mom.  In fact, I often tell caregivers (adult children, Powers of Attorney etc.) not to sign the contract at all. Mom can sign it and it can be signed later after someone that is in full possession of their senses has had an opportunity to look it over. You, as caregiver are stressed, tired and not clear on what’s happening. Your mother is sick, medicated and possibly suffering from mild dementia or psychosis (both can be caused on a temporary basis by long hospital stays). Neither of you is in top form to sign an important legal document that is likely to have very serious consequences.

Is there more? Oh there is much more. Stay tuned for Choosing a Nursing Home. Part Le Deux

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Potentially Significant Change to Medicare Benefits

Your Medicare Benefits may be changing — for the better!

I’ve been reading about a case in Vermont, a class action suit, that is poised for a settlement agreement (awaits judicial ok) that would significantly alter the benefits available under Medicare for skilled care and therapy services. For the better in my opinion.  I still have some questions about how this would apply to patients in skilled care and unskilled care facilities. Still doing some research on that. I hope to have a more detailed post soon once those ambiguities have been cleared up.

In the mean time however, if you have been denied coverage for skilled care or therapeutic services — or have a loved one that has (or will soon be “de-certified”) you should be following this development:

SETTLEMENT EASES RULES FOR SOME MEDICARE PATIENTS (NYimes)

… stay tuned to this blog for more details

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Long Term Care — Planned For It?

Typically, the first time someone calls me it is because they need a Will or other estate planning documents.

In the course of our initial consultation, I ask lots of questions, some of which is intended to draw out what their plans are for making sure their care needs are taken into consideration as they age – no matter where that may be — at home, with family or in a facility.

The second situation in which I’m usually called is when there is already a medical emergency or event and it is basically to late to do any planning for long term care – it’s a matter of stanching the flow of money and resources and that is sometimes just not possible.

Recently, the New York Times published a great piece on Long Term Care Insurance and you should read it whether you have Long Term Care Insurance or not.  This is relevant if you are yourself reaching an age when you are concerned about your care, if you are a “planner” and need some insight into how these things work, or if you have aging parents and are trying to figure out how you are going to finance their care.

One shortcoming in the NYTimes piece is that it doesn’t cover the role that an attorney can play in planning for long term care. For that, you will have to call me.

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BREAKING: New “Nursing Home Compare” System released by Medicare.gov

This has always been a useful tool, but it has recently be substantially upgraded and now provides much better data in easily navigatible screens. You can search for nursing facilities by any number of means, state, county, within a specific zip code or by name. You can compare several at a glance and you can “drill down” to very detailed information INCLUDING the most recent survey and inspection reports! Extremely useful tool, Check it out here: http://www.medicare.gov/nursinghomecompare/search.aspx

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ObamaCare and Medicare — what’s the REAL Impact?

Medicare
Medicare — as we know it

Now that the dust is beginning settle, and hopefully, some of the political posturing will subside, its time to look at what is actually in “Obamacare” (or, more officially, the Affordable Care Act) Most of us in the field of Elder Law are concentrating our energies on what the law does with regard to Medicare. Way back in February of 2011, then-adminstraor of CMS (Centers for Medicaid/care) Dr. Donald M. Berwick testified before congress as to what the implementation of the law would do and gave special attention to Medicare and the improvements we could expect.  Here’s a transcript of Dr. Berwick’s testimony. Very readable. I recommend it!

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