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To Stay At Home Or Not To Stay At Home: That Is The Long-Term Care Question

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Many elderly and disabled Americans may face extended hospital stays or long term care in nursing homes. But, many could be receiving high quality care that keeps them healthier, longer in their own homes.

Alice Bonner, of Northeastern University, and Robert J. Master, of the Commonwealth Care Alliance, look at how the long-term care landscape is changing — and what the future may hold.

AliceBonnercropAlice Bonner, PhD, RN, is an associate professor of nursing at Northeastern University. Previously, she served as director of the division of nursing homes at the Centers for Medicare and Medicaid Services.

What does home mean to you?

It may be a house in the suburbs or a high-rise apartment in the city. A trailer in the country or some type of shelter or group home. At the end of life, or for those with severe disabilities, it often means a nursing home.

Roughly 12 million Americans with functional impairments today rely on “long-term services and supports” (LTSS). LTSS refers to assistance for people who need help performing routine daily activities: getting dressed, taking a bath, eating, going to the bathroom. Most people receiving LTSS are elderly, but 44 percent are under 65.

Long-term services and supports are costly. On average, nursing homes cost about $70,000 a year per person, although cost varies considerably from state to state. Assisted living facilities generally cost about half that. However, the vast majority of people receive LTSS delivered by unpaid caregivers in the community. Estimates are that unpaid caregiving may represent up to $200 billion in health care costs that are not captured in Medicare, Medicaid and private spending projections.

The overall costs for LTSS will continue to rise as baby boomers retire, and as the population of “old-old” Americans, those over 85, increases even more rapidly.

How are we going to deal with this challenge — providing necessary care and support in settings that provide options and enable people to make choices about where they live?

How are we going to deal with this challenge — providing necessary care and support in settings that provide options and enable people to make choices about where they live?

First, there’s a growing recognition that some nursing home residents neither want nor need to live there. Of the 1.4 million Americans living in nursing homes 22 percent have no functional impairment and 35 percent have little or no cognitive impairment. In some cases, these are short-term residents who plan to return home. But in other cases, they may be people who are living in the nursing home long-term but would like to return to a community setting. These individuals should receive assistance in evaluating their options for returning to the community.

Over the past two decades federal Medicaid policy has slowly shifted in recognition of that fact. In 1995, 80 percent of Medicaid long-term care spending went to nursing homes. Today nearly half is spent on home and community-based care.

It used to be, for example, Mrs. Jones would fall, break her hip and end up in the hospital. At 4 p.m. Friday, Mrs. Jones’ daughter would get a call informing her that Mrs. Jones was being sent to a nursing home that evening.

Once in the nursing home, Mrs. Jones’ rehabilitation might go slowly. As her short-term Medicare benefits ran out, the recommendation would be that she remains in the nursing home long-term. Medicaid would take over her payments, and she might spend the rest of her life there, without any re-evaluation of whether or not she might be a good candidate for returning to the community. Very often, no one would ask the resident about their wishes because appropriate LTSS for people with complex, chronic conditions did not exist in many communities.

With additional focus on the requirements in the Olmstead Act, first passed in 1999, states now may have more options. Nursing homes are required to ask every quarter whether a resident wants to return to the community. If she does (three-fourths of nursing home residents are women, most are widowed), she may receive assistance from a state-appointed transition coordinator, who helps patients who wish to move back into the community.

In fact, despite the growing population, the number of nursing homes in the U.S. has slowly but steadily declined over the past 15 years.

And nursing home care is being transformed too. Thirty years ago, 30 to 45 percent of nursing home residents had daily physical restraints. Now only 2.2 percent are physically restrained.

Unfortunately, in too many cases (one in four) anti-psychotic medications are being used, sometimes as a form of chemical restraint, often for patients who have no psychiatric diagnosis

Unfortunately, in too many cases (one in four) anti-psychotic medications are being used, sometimes as a form of chemical restraint, often for patients who have no psychiatric diagnosis. In 2011, the Centers for Medicare and Medicaid Services initiated the National Partnership to Improve Dementia Care with a focus on reducing unnecessary anti-psychotic medication use in nursing homes.

Through the National Partnership, coalitions in all 50 states are working to eliminate the overuse of anti-psychotic drugs in nursing homes. So far, we’ve seen an 11.4 percent reduction nationally in the use of those drugs in long-stay nursing home residents. Some states have seen reductions of 25 percent or more. So improvements in quality are possible in nursing homes and other settings, and ensuring quality and safety in every setting is a role of government and is essential for public protection of this vulnerable population.

It can be sobering to confront the possibility of increasing disability (not to mention the inevitability of death) as one ages; but we are learning that healthy, productive aging is possible, at any age with the right systems of support. With a rapidly aging population, and extremely high health care expenditures, it’s critical that we continue to confront the challenges presented by the need for LTSS in frail older adults and people with disabilities so that those of us who are elderly and/or disabled can live as independently and successfully as possible. Wherever home is.


Robert Master, MD, is CEO of Commonwealth Care Alliance, a nonprofit accountable care organization caring for thousands of Medicaid and dual eligible elders and younger individuals with disabilities throughout Massachusetts.

The Affordable Care Act (ACA) is the most monumental piece of health care legislation in U.S. history — even more so than Medicare and Medicaid — because it is fundamentally transforming how care is delivered.

We see this at the Commonwealth Care Alliance (CCA) where we care for elderly and disabled people like Anna C. for whom our slogan “healthy is harder for some” is a fact of life.

Anna has long standing multiple sclerosis (MS), with complete paralysis in both legs, impaired bladder function, and weakness and increasing spasticity in both her arms. Chronic depression and asthma exacerbated by heavy smoking predated her MS. She has lived in the same apartment and slept on the same mattress for more than 20 years.

Before coming to us, Anna had multiple hospitalizations for urinary tract infections, asthma attacks and bouts of pneumonia. She had two long post-hospital stays in nursing homes for pressure sore management caused by long hours in bed and a poorly fitted wheelchair.

There may be disagreement about other aspects of the ACA, but there’s near universal agreement that we have to use our Medicaid and Medicare dollars far more effectively.

Anna is representative of the 15 percent of Medicaid or Dual Eligible (Medicare and Medicaid) beneficiaries who account for 50 percent of expenditures in those programs.

For Anna and patients like her, primary care is grossly under resourced, poorly designed and totally ineffective in responding to their needs. As a result, predictable and preventable secondary complications (like Anna’s infections, asthma and pneumonia) lead to repeated hospital stays, declining health and increased costs. Continuity of care through all settings at all times is non-existent.

There may be disagreement about other aspects of the ACA, but there’s near universal agreement that we have to use our Medicaid and Medicare dollars far more effectively. The ACA gives us the tools to do that.

At Commonwealth Care Alliance we’ve taken Medicaid and Medicare funding that follows patients like Anna C. and completely redesigned how they receive health care.

Elements include:

  • Primary care multidisciplinary teams — often led by nurses — with the ability to work in multiple settings replace the 20 minute, ineffective, medically-focused physician office visit, and subsequent home health agency referrals.
  • Individualized care plans for long term services and supports, durable medical equipment and behavioral health services replace the widespread misallocation of resources under “rule based” benefits management.
  • Flexible nurse practitioner home response capability to assess and manage new problems (because people like Anna regularly have new problems) replaces inelastic physician phone calls, ambulances and emergency room visits.
  • Integrated durable medical equipment clinical assessment and management replaces distant “prior approval” processes and months of delay.
  • Engagement by a culturally and linguistically familiar community health worker replaces social isolation.

What that means for Anna is she has a new mattress and wheelchair, paid for by savings from eliminating the need for nursing home care. She has a team of health care providers — a nurse, a physician, a behavioral health clinician and personal care assistants — who know her and help keep her healthy. That team is, in effect, paid for with the savings from the hospital stays (typical cost: $10 to $12,000) Anna is able to avoid because she now has fewer infections and asthma attacks.

What Commonwealth Care Alliance does for Anna C., we do for all our patients. We take the dollars Medicaid and Medicare have budgeted for them; and we take responsibility for the totality of their care: medical, hospital, nursing home, pharmacy, home health.

Because we save on hospital and nursing home expenses, we can spend 4 to 5 times as much on the home care and medical equipment that make it possible for patients to remain independent and living in the community.

The results speak for them themselves:

Our patients are hospitalized roughly half as often as patients cared for in the old fee-for-service model. Only 4 percent of our patients are readmitted to hospitals within 30 days (compared with 13 percent of their peers, on average). We see significant reductions (to 34 percent of the norm) in permanent nursing home placements [LINK]. Our cost trend over the past nine years is significantly lower that Medicare as a whole. And independent rankings for quality of care place us among the highest  in the nation.

As a clinician, I would never go back to practicing the old way.

Anna C. and people like her are teaching us. They’re teaching us what kind of care they need to live full, healthy, independent and productive lives. It’s because of people like Anna that we’re unabashed supporters of the ACA.

View slides from Bonner and Master's Open Classroom presentations here.

This program aired on November 20, 2013. The audio for this program is not available.

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