CMS Proposal Embraces Aging in Place; Medicare Would Train Home Caregivers

A new proposal from the Centers for Medicare & Medicaid Services (CMS) offers to support family, friends, and neighbors who care for frail, ill, and disabled seniors. For the first time, Medicare would pay health care professionals to train informal caregivers who manage medications, assist loved ones with activities such as toileting and dressing, and oversee the use of medical equipment.

The proposal, which would ostensibly cover both individual and group training, is recognition of the role family caregivers, also called informal caregivers, play in protecting the health and well-being of older adults. About 42 million Americans provided unpaid care to people 50 and older in 2020, according to a much-cited report.  The proposal is also support for aging in place; by removing real barriers to family caregiving and encouraging family members and friends to take on care-giving roles, the proposal makes aging in place an even more attractive alternative to institutional care.  

“We know from our research that nearly 6 in 10 family caregivers assist with medical and nursing tasks such as injections, tube feedings, and changing catheters,” Jason Resendez, president and CEO of the National Alliance for Caregiving told KFF News. "But fewer than 30% of caregivers have conversations with health professionals about how to help loved ones," he said.  Even fewer caregivers for older adults — only 7% — report receiving training related to tasks they perform, according to a June 2019 report in JAMA Internal Medicine.

Nancy LeaMond, chief advocacy and engagement officer for AARP, after recounting her personal caregiving experience requiring that she and a caregiving son access library videos regarding caregiving, told KFF News , "[u]ntil very recently, there’s been very little attention to the role of family caregivers and the need to support caregivers so they can be an effective part of the health delivery system.” 

Several details of CMS’ proposal have yet to be finalized. Notably, CMS has asked for public comments on who should be considered a family caregiver for the purposes of training and how often training should be delivered.

Many advocates favor a broad definition of who qualifies as a caregiver. Since several people often perform caregiving tasks, training should be available to more than one person. Moreover, since seniors sometimes reimburse family members and friends for assistance, being unpaid should not be a requirement.  Advisors often counsel seniors needing care to make such payments in order to reduce the countable estate for Medicaid eligibility purposes, and to incentive engagement and advocacy for the senior's best interest. 

Other advocates raised their concerns with KFF News:

As for the frequency of training, a one-size-fits-all approach isn’t appropriate given the varied needs of older adults and the varied skills of people who assist them, suggested Sharmila Sandhu, vice president of regulatory affairs at the American Occupational Therapy Association. Some caregivers may need a single session when a loved one is discharged from a hospital or a rehabilitation facility. Others may need ongoing training as conditions such as heart failure or dementia progress and new complications occur, Kim Karr, who manages payment policy for AOTA, told KFF News.

When possible, training should be delivered in a person’s home rather than at a health care institution, suggested Donna Benton, director of the University of Southern California’s Family Caregiver Support Center and the Los Angeles Caregiver Resource Center. All too often, recommendations that caregivers get from health professionals aren’t easy to implement at home and need to be adjusted.

Judith Graham, writing for KFF News reported that some are, nonetheless, skeptical.

For her part, Cheryl Brown, 79, of San Bernardino, California — a caregiver for her husband, Hardy Brown Sr., 80, since he was diagnosed with ALS in 2002 — is skeptical about paying professionals for training. At the time of his diagnosis, doctors gave Hardy five years, at most, to live. But he didn’t accept that prognosis and ended up defying expectations.

Today, Hardy’s mind is fully intact, and he can move his hands and his arms but not the rest of his body. Looking after him is a full-time job for Cheryl, who is also chair of the executive committee of California’s Commission on Aging and a former member of the California State Assembly. She said hiring paid help isn’t an option, given the expense.

And that’s what irritates Cheryl about Medicare’s training proposal. “What I need is someone who can come into my home and help me,” she told me. “I don’t see how someone like me, who’s been doing this a very long time, would benefit from this [training]. We caregivers do all the work, and the professionals get the money? That makes no sense to me.

Of course, concern regarding systemic over-reliance upon institutional care is valid; systems do not reform easily.  There are other reasons for concern, too.  For example, indoctrinated "trainers" may oppose aging in place for some, and may resist non-traditional treatments and therapies in conjunction with or as alternatives to the traditional.  The new cadre of voices and eyes will, no doubt, sometimes over-reach and interfere with individual autonomy and reliance upon family and friends.  The flip side, of course, is that these eyes and ears can report legitimately unsafe, abusive, or exploitative situations providing vulnerable seniors additional protection.       

Regardless, the proposal is a welcome step in the direction of aging of place as a legitimate alternative to institutional care.  No doubt there is more work to be done, including financially supporting home caregivers who could, in many cases cost a fraction of the cost of institutional care, and secure better health outcomes.

If you’d like to let CMS know what you think about its caregiving training proposal, you can comment on the CMS site until 5 p.m. ET on Sept. 11. The expectation is that Medicare will start paying for caregiver training next year, and caregivers should start asking for it then.

Article Largely Based On: Judith Graham, "A New Medicare Proposal Would Cover Training for Family Caregivers," KFF Health News (August 18, 2023, last accessed 8/27/2023).

Only One-Third of Seniors Think They Can Age in Place

There is a significant gap between the number of U.S. adults who want to age in place and those who actually believe they will be able to do so, according to a new national survey  The survey  was conducted by Edelman Intelligence on behalf of Fresenius Medical Care North America (FMCNA), a product and solutions company specializing in kidney care, and considered 2,750 U.S. adults.  The survey found that only 65% of surveyed adults say they want to age in place. The survey discovered that only 33% — roughly half — believe they’re equipped to make that happen.

This may actually be the first study that suggests that perceived inability to achieve the goal of aging in place is driving those who otherwise might want to age in place to compromise their objective.  Why?  Because studies typically put the number of seniors desiring to age in place at north of ninety percent.  Are seniors abandoning the objective because they are becoming disillusioned in the objective as unattainable?  That would be unfortunate since the objective is quite attainable with planning!

The other takeaway from the study is the large percentage of adults who do not believe they will be able to age in place.  Of course the survey does not answer the question whether the adults are likely to be correct, or are simply misinformed, or as mentioned disillusioned.  But the survey does isolate the perceived or subjective reasons for pessimism, which is important and useful information.  

There are a variety of reasons some older adults doubt their ability to age in place.  Of the survey participants, 29% said they don’t think they’ll have enough money to stay in their homes as they grow older. Another 24% of the adults said they don’t believe their homes are suitable to their needs as they age.  Nearly one-fifth of surveyed adults identified loneliness as an issue, with another 17% identifying proximity to family and friends as a challenge.

FMCNA CEO Bill Valle said in a report that accompanied  the survey: 

“We wanted to explore the perceptions of aging in place and uncover barriers, including social determinants of health and misperceptions around feasibility.  Given an aging population and an increase in chronic disease, innovations that help more people remain in their homes for longer will be welcomed by patients and the health system alike.”

Generally, the FMCNA survey found that both preference and perceived ability to age in place increased with age, with the greatest generation and baby boomers being more likely to pursue aging in place than millennials or those in Generation Z.

Although not by a large margin, rural citizens are more likely than urbanites to want to age in place.

The survey also highlighted the significant role that social determinants of health play in whether people are able to age in place. The key takeaway: the more determinants they’re challenged with, the less likely they are to believe they can age in place.

“This research further demonstrates the importance of addressing social determinants of health to improve patients’ quality of life and the chances for aging in place successfully,”  “It also suggests we must continue to help educate patients about all the resources now available for people to receive care in their own home,”

Felicia Speed, corporate director of social work services at FMCNA, said in a statement.

The survey results may have been impacted by seniors’ general lack of knowledge about what kind of care can be delivered in the home and how well it can be delivered. Kidney patients, for example, still aren’t so sure whether they can receive dialysis anywhere other than a clinic or hospital.

Roughly 30 million people in the U.S. have chronic kidney disease (CKD).  In-home dialysis and kidney care is typically far less expensive than facility-based treatment. That’s why the Trump administration has experimented with implementing incentives for companies that have kidney-related home offerings.

Barriers remain: 50% of dialysis patients believe the quality of care would be better in a clinic or hospital, compared to the only 25% who believe the quality would be better at home, according to the FMCNA survey.  However, 54% said that they would choose at-home dialysis if they knew that the quality of care would be equal to what they receive in hospitals or clinics.

More than 80% of CKD patients prefer to age in place, but fewer than half of them believe they will be able to.  “With adults living longer than ever before and a looming shortage in caregivers, it is critical for the health care community to commit to a future where older adults can age on their own terms,” Valle said.

Are You Really Better Off in a Nursing Home than at Home? SNF Residents with Pre-existing Healthcare Associated Infections Less Likely to be Readmitted to Hospital

According to McKnight's Long-term Care News, "skilled nursing operators have a new tool in their marketing kits to portray themselves as worthy providers of good clinical care."  According to McKnight's: 

Residents with pre-existing healthcare-associated infections (HAIs) are less likely to be readmitted to a hospital when discharged to a skilled nursing facility as opposed to a home-health setting, according to University of Michigan researchers.

The study found that SNF residents with HAIs were 38% less likely of being readmitted when compared to patients who returned home or received home health care services. The most common reasons for all readmissions included Clostridioides difficile and urinary tract infections.  

Investigators used national hospital discharge data from more than 702,000 Medicare beneficiaries age 65 and older. About 353,000 of those seniors, or 50%, were discharged to a SNF. About 179,400 (26%) were discharged to home health care and about 169,800 (24%) were sent home. 

The study was published  in the Journal of the American Geriatrics Society. 

So, if you contract a "healthcare-associated infection," an infection you would not have contracted at home, this study suggests you are more likely to have a positive health outcome if you go to another healthcare institution, a skilled nursing home, rather than to your home. 

The study based positive health outcome upon hospitals readmissions, but there does not appear to be in the study a control to determine whether readmissions did not occur because they are penalized by Medicare regulations.  Bottom line, though, is that there is now a study which stands squarely for the proposition that you should accept referral to a SNF from a healthcare institution/hospital from which you may have contracted an infection rather than transfer to your home. 

Hopefully the industry wields responsibly the shiny new tool in their marketing kits to portray themselves as worthy providers of good clinical care.  One would hope that would include full disclosure of the risks of institutional care:

• One-Third of Nursing Home Residents Injured or Killed In Treatment;
• New Cont
• Institutional Care: America's Most Vulnerable Seniors Raped and Sexually Abused;
• COPD Patients Discharged to a Skilled Nursing Have Two Times the Risk of Death Within Year Compared to Those Who Go Home;
• Hapatitis Infection Risk in Nursing Homes Up 50%; Infection Risk Across the Board Increases;
• Resident's Death Caused By Nursing Home Failing to Follow Advanced Directives Requesting CPR;
• Nursing Home Involvement in Patient's Death Object Lesson on Aging-in-Place Planning;
• Nursing Home Worker Faces Homicide Charges in Violent Death of Resident;
• Paramedics Often Obstructed, Provided Insufficient Information On Nursing Home Calls;
• Non-Profit Long-Term Care Safer than For-Profit;
• Habits Are Hard to Break: Nursing Homes Habitually Violate Federal Standards Year After Year;
• CDC Reports That SNF Workers Most Likely Among Health Care Workers to Forego Recommended Vaccinations;
• Don't Let Institutions Plan for You: Medicaid-Eligible Nursing Home Resident Stuck With Costs of Private-Pay Room;
• Many Skilled Care Providers Still Unaware of New Medicare Rules Permitting Chronic Condition Care;
• Ohio Ranks Poorly on Long-Term Care Services Scorecard;
• Hospice Costs Medicare Less Notwithstanding that Hospice Patients Live Longer.

    

Aging in Place Frustrated By Morass of Regulations- Federal Court Orders State to Give Senior Opportunity to Return Home

It is rare that a single case admits the existence of the morass of laws and regulations frustrating "Aging in Place" as a discreet planning objective.  It is rarer still that a judge carefully outlines just how these laws and regulations frustrate a patient's simple desire to "return home."  We find both in the opinion of the Hon. Jane Maghus-Stinson, Chief Judge United States District Court Southern District of Indiana, in the case Vaughn v. Wernert (S.D. Indiana, June 1, 2018).

Karen Vaughn, a woman living with quadriplegia in her own apartment for some 4o years, was held against her will in a care facility following a hospitalization for a temporary illness. The temporary illness did not alter dramatically her functional or cognitive capability. She wanted to go home. The state refused to let her "return home," arguing that it could no longer find a home care agency that could provide the level of services Ms. Vaughn needed following a tracheotomy in 2012.  The Court introduced the case as follows:

This case is before the Court because Karen Vaughn, a woman living with quadriplegia, has been institutionalized in hospitals and nursing homes for nearly two years, and she wants to go home. She desires and is eligible to receive home-based care, and she seeks to require Defendants, various entities of the Indiana Family and Social Services Administration, to provide that care. She raises claims under the Americans with Disabilities Act, the Rehabilitation Act, and the Medicaid Act, arguing that Defendants have failed to provide her with the medical assistance for which she qualifies, thereby institutionalizing her against her will. Ms. Vaughn seeks injunctive relief, requiring Defendants to take whatever measures are necessary and required by law to provide her with community-based care in the setting of her home (emphasis added).

The  case permitted  Judge Maghus-Stinson to revisit the Supreme Court's landmark 1999 decision in Olmstead v. L.C., 527 U.S. 581 (1999), in which the the U.S. Supreme Court ruled that states can violate Title II of the Americans With Disabilities Act of 1990 (ADA) if they provide only institutional care for the disabled when the disabled could be appropriately served in a home or community-based setting. While the Olmstead decision involved two women with developmental disabilities and mental illness who were residents of a psychiatric hospital, it has been interpreted to extend beyond those specific circumstances. The decision is seen to apply to people with physical as well as mental disabilities, to those in nursing homes, and to those living in the community and at risk of institutionalization. As a result, Olmstead has generated considerable discussion regarding the provision of long-term care services, not only for people with disabilities who currently need services, but also for the growing numbers of aging baby boomers who might need care in the coming decades. The Medicaid program is also seen to be governed by Olmstead, which program permits states to make many of their own decisions, within broad federal guidelines, about whom and what long-term care services to cover, and in what settings.

In Vaughn, ruling on cross motions for summary judgment, the court rejected the state's arguments that home or community based care was unavailable to Ms. Vaughn.  The court ruled that these were only unavailable to Ms. Vaughn because of the complexity in reimbursement rates, not because of the availability of appropriate care providers.  Judge Jane Magnus-Stinson observed,  in ruling in favor of Ms. Vaughn, that:

"...the undisputed medical evidence establishes that at or near the time of the filing of this Complaint, Ms. Vaughn’s physicians believed that she could and should be cared for at home—both because home healthcare is medically safer and socially preferable for her, and because Ms. Vaughn desires to be at home... That support has continued throughout the pendency of this litigation, through at least April of 2018 when Dr. Trambaugh was deposed. Based on the evidence before this Court, it concludes as a matter of law that Ms. Vaughn has established that treatment professionals have determined that the treatment she requests—home healthcare—is appropriate."

The court traced, and criticized, the almost indecipherably complex nature of Medicaid waiver programs that fund portions of home care:

Defendants' [the State] own administrative choices—namely, the restrictions they have imposed on Ms. Vaughn’s home healthcare provision pursuant to their Medicaid Policy Manual—have resulted in their inability to find a caregiver, or combination of caregivers, who can provide Ms. Vaughn’s care in a home-based setting. It may be the case that other factors, such as the nursing shortage or inadequate reimbursement rates, contribute to or exacerbate the difficulty in finding a provider. But, at a minimum, Ms. Vaughn has established that Defendants' administrative choices, in addition to their denials of her reasonable accommodation requests, have resulted in her remaining institutionalized.

The court explained:

"[The state's] efforts to locate a home healthcare provider were expressly limited by two factors: the reimbursement rate offered by Defendants to home healthcare providers, and the "Medicaid Policy Manual" requirements that certain tasks be performed by skilled medical professionals. But, as Defendants discovered in attempting to locate care providers for Ms. Vaughn, no skilled medical provider will provide the care at the reimbursement rates authorized by the State. Significantly, however, both Ms. Vaughn and her health care providers disagree with the Manual's requirement that a skilled level of care is necessary for some of the tasks associated with Ms. Vaughn's care. Ms. Vaughn has requested relief from the Manual's skilled care requirements. Defendants have offered no source of authority aside from the Medicaid Policy Manual itself as to why it cannot accommodate Ms. Vaughn's request for some skill-level service modifications (emphasis added).

Discussing the State's designations of services as either skilled, or non-skilled, the Court's frustration is obvious:

"...some of these services can be performed by either skilled or non-skilled

caregivers, as deemed appropriate in an individual's plan of care. Some of these overlapping services include active and passive exercise (which is, interestingly, only listed as skilled care on the corresponding respiratory disorders chart), stimulation, and vital signs. In yet another chart, regarding "Gastrointestinal Disorders," vital signs are listed as only skilled care services, and exercise is listed as only a non-skilled care service. In the "Central Nervous System Disorders" chart, "positioning" is listed as only a non-skilled care service,  but on the "Musculoskeletal Disorders" chart, "position changes" are listed as only a skilled care service. [citations and footnotes ommitted]. 

The Court simply cannot make heads or tails of these designations, and Defendants have offered no explanation whatsoever as to the basis for their categorizations in the first place, or the inconsistencies among them in the second. Defendants have also offered no explanation as to how those distinctions might be "necessary for the provision of the service." As Steimel explained, Defendants "cannot avoid the integration mandate by binding [their] hands in [their] own red tape." Steimel, 823 F.3d at 916.

Judge Maghus-Stinson recognized that the court could not simply order Ms. Vaughn's "return home" as an appropriate remedy under the law.  Instead she set a "remedy hearing" to explore all proposals, while  urging the parties to meet prior to that hearing in hopes of finding a mutually agreeable plan.  One hopes that the State will remove the impediments in the path to Ms. Vaughn's return home. 

Oregon Court Orders DHS to Restore In-home Care- An Object Lesson in a State's Lack of Commitment to Home and Community Based Care

When state and federal agencies proclaim support for aging in place and home based care, there is reason to doubt their resolve.  A recent example can be found courtesy of a court case against the Oregon Department of Human Services (DHS).  A court has ordered Oregon DHS to restore previous levels of in-home care services, at least temporarily, to people with intellectual and developmental disabilities in a federal lawsuit contesting recent cuts.

DHS determines every year how many hours of in-home care someone with an intellectual or developmental disability is eligible to receive.  Disability Rights Oregon, an advocacy organization that filed the suit last week, objects to how those decisions are made, saying the process lacks clarity.

The lawsuit alleges that under federal law, the agency violated the civil and due process rights of Oregonians receiving these services, as well as the Medicaid requirement that the Office of Developmental Disabilities Services must provide such services “as needed.”  Last year, the agency implemented a new assessment method on a rolling basis, which the lawsuit argues resulted in a reduction of in-home care hours for many people — although the amount of help they needed at home had not changed.  Not all people receiving in-home care services have yet felt reductions, because the changes have been implemented gradually.

In 2013, after the expansion of Medicaid under the Affordable Care Act, and a specific federal funding option called the Community First Choice Plan that provided funds so people with disabilities could access community-based services, there were significant increases in those eligible for in-home care — and in costs to the state.  In 2015, Oregon legislators agreed to pay for the unanticipated costs in the upcoming budget cycle, but asked DHS to come up with a way to contain the rate of cost growth in the future. That became the method that advocates are now contesting in court.  Cost of care

The Department of Human Services makes up a significant chunk of the state’s approximately $20 billion general fund budget, which lawmakers are busy trying to balance in the face of an approximately $1.6 billion shortfall.  Reducing in-home care for people with intellectual and developmental disabilities by 30 percent, as DHS had planned prior to the court order, would have saved the state’s general fund a comparatively paltry  $6 million in the upcoming two-year budget.  

Cost considerations, i.e., saving $6 million of a $1.6 billion shortfall, could send people with intellectual and developmental disabilities currently being treated at home to foster care, group homes, and skilled nursing facilities.  To put this in context,  a state audit found that Oregon Health Plan caseworkers were “knowingly” extending benefits to illegal immigrants and unqualified people. Also, 4,400 people who were above the income limits still received benefits. The total cost to Oregon taxpayers is $4.3 million a year.   Further, an Oregonian survey helped to unveil $1.4 billion in uncollected debts to the state. It appeared that most state agencies have a collection problem and the actual cost may be even higher than $1.4 billion. Among the examples was a business that bought $50,000 of supplies made by blind workers under the State Commission for the Blind, for which they never paid. 

Home and community based care, it would seem, is a too-easy target for money-grubbing administrators.   

This article is heavily reliant upon the article found here.