In This Issue: Obamacare twists and turns | Verma on Medicaid | state waiver requests | tax reform | home health | caregiving finances | workplace assistance | new tech for seniors | health insurance coverage options | end-of-life wish fulfillment | caregivers’ mental health | MediCaring Communities | hospice care failures | and a scary Nevada guardianship system.

Obamacare, Medicaid, and Tax Code Debate

“The course of true love,” lamented Lysander in “A Midsummer Night’s Dream, “never did run smooth.” Lysander could just have easily been referring to the twists and turns of Obamacare rescue plans, Medicaid in the wake of the post-Graham Cassidy repeal bill defeat, and the fate of health services delivery in the debate over rewriting the federal tax code.

CMS’s Seema Verma Promises States Flexibility

Amidst the churning health insurance marketplace, Medicaid’s landscape offered its own mix of uncertainties. Speaking at a Cleveland Clinic conference, Statnews reporter Casey Ross wrote, “CMS administrator Seema Verma promised states an unprecedented level of flexibility to design their Medicaid programs as they see fit, pledging to reduce scrutiny of state requests for waivers from federal rules meant to preserve access and quality standards. ‘We want to get to the point where we are making the whole waiver process easier,’ Verma said. ‘We’re not going to tell the states what the priorities are. They are going to come and tell us what their priorities are.’”

Verma Nods to Medicaid Work Requirements

A few days later, as reported by Modern Healthcare, Verma added more specificity to her Cleveland remarks, informing state Medicaid directors that the Administration planned to act favorably on states’ requests for permission to impose work requirements on Medicaid recipients. “For people living with disabilities, the CMS has long believed that meaningful work is essential to their economic self-sufficiency, self-esteem, wellbeing, and improving their health. Why would we not believe that the same is true for working age, able-bodied Medicaid enrollees?” Leonardo Coelto, director of health policy for the National Health Law Program, minced no words reacting to the news, telling Modern Healthcare that “a work requirement is illegal on its face.”

CBPP Response to Pending Waiver Proposals

Meanwhile, in a critical response to the projected CMS/ HHS regulatory approach, the Center on Budget and Policy Priorities’ Judith Solomon summarized, “in addition to the work requirement, the variety of waiver proposals that are currently pending impose premiums on people with incomes below the poverty line; impose a time limit on how long people can be enrolled in Medicaid; limit the Medicaid expansion to people with incomes below the poverty line instead of 138% of poverty; and lock people out of coverage if they don’t submit all paperwork on time.”

Oregon Issued 1332 Waiver for Reinsurance Program

Some waiver decisions have been issued, most notably a go-ahead one in the case of Oregon’s request to waive Obamacare’s requirement for a single risk pool in favor of a state reinsurance program to the extent necessary to establish a market wide index rate. “HHS has determined that implementation of this reinsurance program will lower individual market premiums in the state and the premium tax credits to which Oregon residents would have been entitled absent the waiver. These tax credit savings will be passed through to the state to be used for implementation of the waiver plan.”

Iowa’s Waiver Request Withdrawn

Perhaps the most far-reaching waiver request emanated from Iowa. As reported by the New York Times Abby Goodnough, Iowa had sought to opt out of the ACA’s insurance marketplace next year by offering customers a single plan with lower premiums and a high deductible. “The state argued that the plan that would lower premiums for most of the 72,000 residents of the state who currently have Obamacare health plans, including 28,000 who earn too much to get subsidies to help with the cost.” In the end, however, it was not to be; on October 23 Iowa withdrew its request in the face of CMS’s inability to find a way around the current law’s requirement that a state prove its alternative coverage will be as comprehensive and affordable as Obamacare, cover a comparable number of people, and not increase the federal deficit.

Tax Code Proposal Impacts Family Caregivers

Republicans’ tax revision proposal currently undergoing scrutiny, adjustment, and heated debate will, if enacted, affect every American. For seniors in general and caregivers in particular, alarm bells have been sounded by two advocacy organizations, the Center for Medicare Advocacy and the Medicare Rights Center. The proposed tax cuts, they contend, “use the higher debt they create to argue that drastic cuts to our bedrock programs such as Medicare, Medicaid and Social Security are necessary. For caregivers, the proposed elimination of the itemized medical deduction—used by those incurring large caregiving costs—pose a severe challenge to their efforts to afford to maintain loved ones outside of nursing homes.”

Proposal for Medicare Home Health Payment Changes Withdrawn While CMS Refocuses

CMS has withdrawn a proposal to change the Medicare home health payment system. The proposal had garnered a harsh response from both beneficiary advocacy groups and providers. The latter argued, as summarized by Modern Healthcare’s Virgil Dickson, that “it would shrink beneficiary access to all types of needed services and lead to many home health agencies shutting down. That could have jeopardized hospitals’ ability to reduce costs by sending patients home faster with home health support. Under the nixed home health groupings model, Medicare payment would have been based on patient characteristics rather than the number of visits for various forms of therapy.” In its latest announcement the agency indicated that it will take additional time to engage with stakeholders regarding a system that shifts the focus from volume of services to a more patient-centered model.

Advocacy Groups’ Concern Over Delayed Nursing Home Conditions of Participation Revisions

The National Consumer Voice for Quality Long-Term Care, writing on behalf of numerous advocacy groups, reiterated its concern over CMS’s plans and delays regarding long proposed revisions to nursing home conditions of participation. “The continued prevalence of poor care nationwide makes timely implementation of more robust rules imperative. Studies and reports continue to show the harm nursing home residents experience. One study found that in 2015 more than one in five nursing homes had violations that caused harm or immediate jeopardy. Finally, the natural disasters that hit nursing homes within the past several months provide compelling evidence of the urgent need for these stronger standards and for not postponing their implementation. The importance of rules requiring competent staff, sufficient training, and a well-developed facility assessment that determines what resources are necessary to care for residents during emergencies, is underscored by the events stemming from Hurricanes Harvey, Irma and Maria, and the tragic deaths in Florida.”

Drop in Hospitalizations of Seniors

October did feature one item of uncontested good news: “The CMS has seen a drop in avoidable hospitalizations of seniors and generated nearly $50 million in savings,” reported Modern Healthcare’s Virgil Dixon, “from an experiment to keep nursing home residents out of inpatient care. Under the model, third-party organizations known as enhanced care and coordination providers, or ECCPs, hired nurses to provide education and clinical support to nursing home staff and help keep residents out of the hospitals. All in all, 143 nursing homes in seven states, as well as health systems, universities and consultants, participated in the program, which ran from 2012 to 2016. Health systems that participated in the experiment as ECCPs praised the initiative, even though it aimed to reduce inpatient traffic, which could affect their bottom line. Providers acknowledged that it can be better to keep patients in surroundings they know.”

The Frequently Asked Question: ‘How Can I Get Paid?’

“Can you get paid to take care of your mom?” United Hospital Fund’s Carol Levine asks and answers that question in a concise UHF guide to caregiver financial resources. “It depends,” Levine begins. “The longer answer would spell out the differences that determine eligibility: which state you live in, the age or condition of the person you are caring for, your relationship to that person, his or her income and assets, and more.” Levine describes seven potential options for caregiver payment: a long-term care insurance policy; a private contract with a family member; consumer-directed Medicaid programs; paid family leave; veterans assistance; vouchers for employee caregivers; and tax credits.

Plans to Improve Discharge Planning in New York

UHF also announced a new grant from the New York State Health Foundation “to study ways to improve discharge planning by improving patient and family communications.” The one year project, which begins November 1, will focus on 1) difficulties patients and family caregivers experience and their communication and information preferences about care options, and 2) how housestaff, and up to eight participating hospitals in the New York metropolitan area, involve patients and families and share information with them in planning for discharge. UHF plans to identify best practices, training needs, innovative tools and approaches, and policy levers that hold potential for improving post-acute care decision-making in New York.

Recent Merrill Lynch/Age Wave Study on Caregiving

Merrill Lynch and Age Wave have partnered to produce a 42-page guide , “The Journey of Caregiving: Honor, Responsibility and Financial Complexity.” The publication contains extensive analyses of the challenges inherent in caregiving, with particular emphasis on understanding and coping with financial burdens.

University of Michigan Poll and Report on Dementia Caregivers

In a new national survey report, University of Michigan researchers found that most dementia caregivers find caregiving a rewarding experience, though many also find it stressful. “Caregiving is often a team effort involving a number of family members and friends. Many caregivers are also employed outside the home and may be providing care or support to other people too. While rewarding, the logistics and stress surrounding caregiving may be complicated and magnified by other demands and responsibilities on caregivers’ time and attention. The majority of caregivers in this poll believe their care recipient has enough help. Yet, dementia is a progressive condition, and the needs of the care recipient and the caregiver are likely to change over time. Many caregivers who are not using caregiving resources expressed an interest in doing so, potentially indicating that the needs of some caregivers are not being met.”

Aiding Family Caregivers in the Workplace and with Technology

Potential help for all caregivers is envisioned in two items appearing in October. Focusing on the workplace and opportunities for employers to ease caregiving’s burden, the Northeast Business Group on Health and AARP have released a resource guide recommending that “employers create a corporate culture of awareness, draft workplace policies, benefits and programs, obtain the support of top executives and implement new services throughout the workforce. The guide also suggests employers offer paid sick days that can also be used for the care of a relative, in-house stress reduction program, online or in-person coaching to assist in developing a care plan, digital tools to help employees manage their caregiving duties and legal and financial counseling for employees.”

Meanwhile, the ever-evolving tech revolution is bringing resources to bear on improving the aging experience for seniors and family caregivers. Writing in Kiplinger’s Retirement Report, Sally Abrahms explores the increasing availability and usefulness of virtual-reality tools, robots, connected health technology, and injectable sensors. “All of these technologies are just the beginning, with many more in the works. For example, smart contact lenses are being developed to measure blood glucose from wearers’ tears to monitoring diabetes. Novartis is working with Google to create a contact lens that has a tiny antenna that sends data to a smart phone showing whether a user’s glucose level is too high or too low. Also on the horizon: lighter and cheaper exoskeletons that pinpoint problem areas of the body. Let’s say, as your dad grows older, he develops a gait problem. A camera captures his movements and spots his weaknesses, and algorithms analyze the pictures so that an engineer can make a brace or other assistive technology.”

Updated Medicare Home Health Booklet Raises Concerns For Beneficiaries Needing Maintenance Care

CMS has published an updated Home Health Booklet that describes the Medicare benefit in detail. While welcoming the revision’s new additions, the Center for Medicare Advocacy expressed concern regarding one aspect of the publication. “Unfortunately,” the Center said, “current quality measures and payment incentives for home health agencies do not meaningfully measure care for people who need maintenance care. As a result, many beneficiaries with chronic conditions who require maintenance care are not able to access the level of home health care described in the booklet and authorized by Medicare law.”

Medicaid Expansion in North Carolina: Analysis of the Options

The Duke Margolis Center for Health Policy has published a detailed analysis of the options for Medicaid expansion in North Carolina. “Using the key issues of rural health disparities, value-based payment arrangements, and behavioral health integration, which managed care reform aims to address, we consider how Medicaid expansion in the state will impact the realization of managed care reform goals.”

NEJM Obamacare 2017 Reflections and Prospects

In the wake of the 2017 Obamacare legislative battles, postmortems and prospects for future health system changes are the subject of numerous articles. Three such have been published by the New England Journal of Medicine.

Hospice Care Industry Problems Revealed

The booming hospice care industry comes under the withering eyes of Kaiser Health News reporters JoNel Aleccia and Melissa Bailey in a disturbing review of 20,000 government inspection records. While acknowledging that hospital hospice providers garner considerable praise and gratitude from a substantial percentage of patients and family members who receive service, the reporters uncover many instances where “the hospice care that people expect—and sign up for—sometimes disappears when they need it most. Families across the country, from Alaska to Appalachia, have called for help in times of crisis and been met with delays, no-shows and unanswered calls. At its best, hospice provides a well-coordinated interdisciplinary team that eases patients pain and worry, tending to the whole family’s concerns. From the 86% of Americans who say they want to die at home, hospice makes that increasingly possible. But when it fails, federal records and interviews show it leaves patients and families horrified to find themselves facing death alone, abandoned even as agencies continue to collect taxpayer money from the care. The HHS Office of the Inspector General has called for stricter oversight and monitoring of hospice for a decade, but often promising to do better is the only requirement hospices face when regulators uncover problems. At present there is no punishment short of termination—barring the hospice from receiving payment from Medicare or Medicaid Medicaid—which is disruptive for dying patients who lose service.” Medicare has recently taken one step to provide Medicare beneficiaries with some help in choosing a hospice provider: Hospice Compare website is now up and running. Guidance on hospice selection is also contained in a set of “16 questions family should ask” provided by the Hospice Foundation of America.

The Guardianship System: An Exposé

Hospice care was not the only subject to receive blistering attention in October. With Oregon as the prime example, the New Yorker writer Rachel Aviv took aim at a secretive estate guardianship system that can deprive seniors of their homes and property with little if any due process of law. “The king shall have,” Aviv quotes from a 1324 English law, “the custody of the lands of natural fools, taking the profits of them without waste or destruction, and shall find them their necessaries. The law was imported to the colonies—guardianship is still controlled by state, not federal law—and has remained largely intact for the past 800 years. In Nevada, as in many states, anyone can become a guardian by taking a course, as long as he or she has not been convicted of a felony or recently declared bankruptcy. Elizabeth Brickfield, a Las Vegas lawyer who has worked in guardianship law for 20 years, said that about 15 years ago, as the states elderly population swelled, ‘all these private guardians started arriving and the docket exploded. The court became a factory.’ Pamela Teaster, director of the Center for Gerontology at Virginia Tech and one of the few scholars in the country who study guardianship, told me that, though most guardians assume the duties for good reasons, ‘the guardianship system is a morass, a total mess. It is unconscionable that we don’t have any data when you think about the vast power given to a guardian. It is one of society’s most drastic interventions.’”

Oregon’s POLST Registry Assures End-of-Life Wishes Honored

Kaiser Health News reporter JoNel Aleccia casts a spotlight on Oregon’s groundbreaking approach to assuring that medical professionals follow dying patients’ wishes regarding heroic, intrusive life-saving measures. The innovation consist of a pairing of patients’ POLST—physician orders for life-sustaining treatment—and technology to allow healthcare providers to electronically find any of the 172,000 active forms in Oregon’s POLST registry with a single click, no matter where they were filed. “Previously, providers had access to the 16,000 POLST forms filled out by patients within a given hospital system, but not those submitted elsewhere. Now, during any visit, the information is easy to see at the top of the patient’s medical record. Research suggests that POLST forms guided end-of- life care, whether patients die at home or in a healthcare facility. A 2014 study of deaths among Oregon POLST users found that 6.4% of patients who specified comfort-only measures died in the hospital compared with 44.2% of those who chose full treatment—and 34.2% of people with no POLST form on file. A recent analysis found that seriously ill patients in Oregon are more likely to have their end-of-life wishes honored than those in nearby Washington state—or the rest of the US.”

Family Caregiving: Mental Health and Substance Abuse Risks

The mental health needs of caregivers receive particular attention in a Health Affairs blog post by Nicole Cadovius. “Caregiving offers emotional and other personal rewards, but when added to other family and personal responsibilities, it can impact caregivers’ employment and their own personal well-being. Depression and burnout among caregivers can often lead to poor health choices, including turning to unhealthy use of substances. Sensitizing communities to the mental health risks these caregivers face and increasing understanding of the importance of mental health is a good place to start. A terrific resource to accomplish these goals is Mental Health First Day, an eight hour course that gives people skills to help someone who is developing a mental health problem or experiencing a mental health crisis. It was created in Australia by Betty Kitchener and Anthony Jorm, and brought to the United States by the National Council for Behavioral Health. Mental Health First Aid teaches individuals how to identify, understand, and respond to signs of mental illness and substance abuse disorders in the community.”

MediCaring Communities: A Case for Improved Eldercare

Physician and senior advocate Dr. Joanne Lynn makes a strong case for improved eldercare options by giving readers of her latest Health Affairs blog post the example of her own mother. “She now lives through the peculiar torment of progressive disability, from frailty in a care system that is not designed for her situation: losing nearly half of her weight, barely able to get up from the chair, having a plethora of symptoms with no treatable etiology, and yet having enough heart, lungs, kidney, and liver functions to go on for a while. Hospital care is readily available and paid for, but medications after hours are not available, and she must pay out-of-pocket for personal care. Hospitals, physicians, pharmacists and civic leaders have not made plans as to how to serve large numbers of elderly people living in the community with serious and worsening disabilities.” Lynn emphasizes anew her call for MediCaring Communities. “What would be required? Allow some communities to take on responsibility for monitoring and improving their eldercare systems performance that enable them to shift resources for medical care to supportive services when appropriate. Let them be able to develop the workforce and improve the built environment. Enable geographic concentration of home care services to capitalize on efficiency. Help these pioneer communities develop metrics to monitor the local systems’ performance over time and set priorities and monitor the effects of changes. Explore the possibilities for reliable financing.

FCA Turns 40!

In recognition of National Family Caregiver Month and the 40th Anniversary of Family Caregiver Alliance, we have begun the celebration with a new blog series to be published over the next several months. Our first blog, A Legacy of Survival: Part 1 of 3 is written by Diana Petty, FCA’s first executive director. It tells the story of FCA’s beginnings. Originally called the Family Survival Project, FCA is considered the first organization in the U.S. to address the needs of, and advocate for, family caregivers. In 1977, co-founder and dementia caregiver Anne Bashkiroff’s frustration was fueled by the comment, “Mrs. Bashkiroff, you must realize that society isn’t ready for problems such as yours.” With the support of the San Francisco Mental Health Association, Anne met caregiver and co-founder Suzanne “Sue” Harris. Together, these two women went on to develop what is now Family Caregiver Alliance, 40 years ago. Read Part 2 and visit our 40th Anniversary page here .

CREDITS

Contributing to Caregiving Policy Digest are Alan K. Kaplan, attorney and health policy consultant, Kathleen Kelly, and Francesca Pera (editing and layout).

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