Vol. 17, No. 9 October 11, 2017

In This Issue: Fallout from the Obamacare debate | the CMS Innovation Center agenda | the RAISE and CHRONIC Care Acts | a Joint Commission hit and miss | home health payment rules | nursing home arbitration agreements | state Medicaid waivers | the burdens of family caregiving | paid family and medical leave | family caregiving for dementia sufferers | “Care Maps” | the “little” Obamacare lobbyists | single payer health care | and Atul Gawande’s latest essay: “Is Health Care a Right?”

FEDERAL LEGISLATION AND POLICY

ACA Repeal: The Mythical Feathered Phoenix Like the mythical feathered Phoenix, the Republicans’ legislative effort to rollback Obama care has risen more than once from the ashes only to founder against a 50 vote barrier in the Senate. What happens next remains unclear. On the one hand, the Senate’s HELP Committee’s bipartisan move to stabilize the healthcare marketplace has resumed in the wake of the ACA repeal failure, but the road towards an ultimate White House signature remains murky. At the same time one of the two cosponsors of the most recent repeal bill, Sen. Lindsey Graham, indicated that in his view withdrawal of his measure might not be the proverbial stake through the heart that would constitute final defeat. What remains is a still-standing, but somewhat crippled Obama care. Major insurers have left the individual marketplace (although all U.S. counties appear to offer at least one option), cost-sharing subsidies continue to flow, but on a month to month basis and premiums for available plans have risen sharply. And amid these developments the sudden resignation of HHS Sec. Tom Price, has added one more bit of uncertainty to the mix.

CMS Policy and Regulatory Changes Expected While Secretary Price’s departure leaves a temporary vacuum at the very top of the Trump Administration’s health policy team, the number two HHS official, CMS Administrator Seema Verma, appears ready to continue implementation of a wide-ranging agenda of policy and regulatory changes. Writing in the Wall Street Journal, Verma set forth the department’s intention to refocus its Center for Medicare and Medicaid Innovation on, among other topics, market-based or consumer directed payment models, increased participation in advance payment models, and innovative models for Medicare Advantage payments. What the CMS solicitation for proposals will ultimately translate into remains unclear, but one observer, Erin Mershon of the PBS news hour, saw hints of a desire to introduce greater patient-physician private contracting into Medicare, as well as speaker Paul Ryan’s long supported “premium support” approach to Medicare fee-for-service plans.

Senate Approval of RAISE Family Caregivers Act and the CHRONIC Care Act Almost lost in all the late September news was Senate approval of two measures directly related to family caregivers. Senate Bill S. 1028—the RAISE Family Caregivers Act—garnered a large bipartisan majority to send it on to the House. The measure, according to the National Association for Home Care and Hospice (NAHC), would accomplish three goals: implement the federal Commission on Long-Term care’s recommendation that Congress require the development of a national strategy to support family caregivers; create an advisory body to bring together relevant federal agencies and others from the private and public sectors to advise and make recommendations; and annually identify specific actions the government, communities, providers, employers, and others can take to recognize and support family caregivers. Meanwhile a second bill—S. 870, the CHRONIC Care Act, cosponsored by two Republicans and two Democrats— also made its way on to the House, seeking to improve chronic disease management services and care coordination at home. The legislation, according to NAHC, “will increase access to telehealth for Medicare patients with chronic illnesses and create incentives for patients who received care via accountable care associations. The bill would also extend the Independence at Home demonstration project to allow people to remain in their homes rather than institutionalized settings. Finally the act would permit reimbursement for more social services and permanently extend special needs plans that assess chronically ill patients.”

Report Faults CMS for Poor MLTSS Monitoring The US General Accountability Office has issued a report that faults CMS’s oversight of states’ monitoring of managed long-term services and supports (MLTSS). Reviewing MLTSS delivery in six states, GAO found that CMS did not require adequate reports regarding such critical elements as provider network adequacy, incidents possibly causing abuse or neglect of beneficiaries, and beneficiary appeals and grievances.

House Letter to CMS Urges Protection from Nursing Home Forced Arbitration In the wake of the terrible Florida nursing home deaths caused by the loss of air conditioning during Hurricane Irma, one of HHS’s proposed rollbacks of Obama-era patient protections—the prohibition of forced arbitration agreements as a condition of nursing home admission—has come under sharp criticism from 26 House Democrats. In a letter to CMS, the writers urged that the department “issue a final rule that will ensure that residents in these facilities enter into arbitration agreements only on a voluntary and informed basis after a dispute arises. This vital distinction would preserve arbitration as a useful tool for alternative dispute resolution among willing residents rather than one that forces parties into arbitration before disputes arise.”

Patient Handoffs Addressed in Joint Commission Sentinel Event Alert The Joint Commission, which oversees quality standards throughout Medicare and Medicaid’s health delivery system, has issued a Sentinel Event Alert dealing with a matter of vital importance to patients and family caregivers: patient handoffs or transitions between healthcare providers for continuing care, treatment, or services. The publication contains very detailed recommendations for assuring improved handoffs, particularly with regard to communication of patient status information in a timely fashion to all concerned parties in the transition process.

Proposed Changes to Medicare Home Health Payment Rules Debate Modern Healthcare’s Harris Meyer dissects the debate that has flowed from CMS’s July proposed changes to Medicare home health payment rules, proposals that, in the department’s view, would encourage providers to service patients with clinically complex or chronic conditions. “Under the proposed home health groupings model,” Meyer writes, “Medicare payment would be based on patient characteristics rather than a number of visits for various forms of therapy. The new system would boost payment for skilled nursing and home health aide visits for medically complex patients. But providers and patient groups warn that the new payment model would shrink beneficiary access to all types of needed services and lead to many home health agencies shutting down. That could jeopardize hospitals’ ability to reduce costs by sending patients home faster with home health support.”

Senate’s 10 Year Budget Resolution: $1.5 Trillion Tax Cut v. Healthcare? In the aftermath of the failed Graham-Cassidy repeal bill, the Republican-controlled Senate Budget Committee has set the stage for action on a 10 year budget resolution that Democrats argue would entail huge Medicare and Medicaid spending cuts over 10 years on the way to a $1.5 trillion tax cut. The Senate Committee’s goal is an agreement with House Republican budget setters to enable a reconciliation bill process that permits Congressional approval without the necessity of a 60-vote Senate majority.

The Future of Medicaid Waiver Policy With state Medicaid waiver proposals generating much attention and debate, the Alliance for Health Policy sponsored a webinar featuring four speakers focusing on the future of waiver policy (see Media Watch section). Although the video and transcript of the event were truncated due to technical difficulties, all the speakers’ presentation materials are available at AHP’s website.

RESEARCH AND RESOURCES

The burdens of family caregiving—its enormous financial and emotional toll—are the subject of several important reports.

The Cost of Long-Term Care in 2017 “The Staggering Prices of Long-Term Care 2017” is the title of a review by Emily Gurnon of Genworth’s latest cost survey. “The cost of long-term care just keeps going up,” Gurnon begins her summary, “and most Americans keep believing—incorrectly—that the government will cover most or all of it. A private room in a nursing home now costs consumers more than $8,000 per month or $97,455 per year. That’s an increase of 5.5% from just one year ago and a nearly 50% increase since 2004. Hospitals are under pressure to cut costs and get patients discharged more quickly. Patients who might spent a week in the hospital in years back now only spend three days. Once they then go to the nursing home for rehabilitation, they are sicker and require more care—and in turn, the nursing home may have to put on more staff, or more experienced staff.”

University of Michigan Study Looks at Prevalence of Caregiver ‘Pop Drop’ An indication of the caregiving toll on unpaid caregivers comes by way of a University of Michigan study that found support for the prevalence of a “pop drop”—when a disabled older person comes in for medical attention, but it seems as though the person who takes care of them at home is also seeking a break from the demands of caregiving. Study director Dr. Claire Ankuda observes that “Many of us who work in clinical settings feel that patients with high home caregiving needs, such as dementia, often rely on the medical system as a source of respite for their spouses or other caregivers because other respite isn’t paid for. I definitely think there are specific services that could help caregivers, if we can identify those people who are highest risk and provide a basic level of support such as an around-the-clock geriatric care call line that could help caregivers feel less isolated and talk to a nurse about whether, for example, to go to the emergency department.”

Informal Caregiver Health, Financial, and Employment Impacts Revealed in Survey from Transamerica Institute A further look at caregiving in the US comes in the form of results from a comprehensive survey conducted by the Transamerica Institute. Analyzing input from more than 3,000 non-professional caregivers, the report documents the enormous commitments caregiving has on health, finances, and employment status. “Caregiving is a full-time job for many—36% of caregivers spend 100 or more hours per month providing care, with a mean of 50 hours spent per month, across all caregivers. The most time intensive duties are providing companionship, meal preparation, and personal care and feeding. Among the 49% of caregivers who perform medical/nursing related tasks, only about half say they learned them from hospital or doctor’s office personnel. Many caregivers are in need of formal training to perform caregiving duties especially those involved in medical or nursing related tasks. Without adequate training they are putting both the care recipient and themselves in harm’s way.”

An Analysis of California’s Family and Medical Leave Program Taking aim at the lack of financial support for family caregivers, the Center for American Progress provides an analysis of California’s family and medical leave program, CA-PFL, the longest-running family and medical leave program in the United States. Since 2004 CA-PFL has applied to almost all workers, with no restrictions on firm size or minimum hours and a 55% wage replacement benefit. “The ability to take time away from work to be able to care for a sick child, spouse, or parent,” the Center concludes, “is a vital part of maintaining attachment to the labor force for workers and strong labor force participation rates in the US economy. As family caregiving needs increase with an aging population and as all people continue to need care at some point in their lives for illness, caregivers must balance both those responsibilities with their careers. Access to a paid family and medical leave program that provides for family caregiving will be crucial to their ability to do this.”

The Need for Paid Family Leave for Those with Disabilities In a combined effort, disability advocacy organization The Arc and the Georgetown Center on Poverty and Inequality have published a paper outlining why paid family medical leave is a necessity for the economic security and stability of people with disabilities and their families. “Millions of workers in our economy either have a disability, or have a family member with a disability,” study co-author TJ Sutcliffe emphasized. “Yet largely under the radar has been the disability community—too many people are being forced to choose between a paycheck and their own health or a family member’s health.” The paper’s recommendations: a national paid leave approach should, among other things, be accessible to all working people, reflect a modern definition of family, cover all the major reasons that people need to take leave, replace sufficient wages so people can make ends meet, be for long enough to promote positive outcomes, ensure that people can keep jobs and health insurance, and include education and outreach that is fully accessible to people with disabilities. “Knowing that your job will be there for you if you take paid leave is a must for nearly all of us, and disability knows no geographical, socioeconomic, or political boundaries,” Sutcliffe said. “Other countries have done better, and American workers, including people with disabilities and their families, desperately need better.”

Six Evidence-Based Programs Measuring Quality of Life Improvement of Dementia Caregivers Adding to the call for aid to caregivers, but focusing particularly on families confronting dementia, the AARP Public Policy Institute’s Lynn Friss Feinberg offers a detailed look at six evidence-based programs that have been shown to improve one or more aspects of the quality of life of “dementia caregivers.” Feinberg identifies seven outcome measures that the highlighted programs have succeeded in achieving in whole or in part: improved caregiver well-being, improved caregiver knowledge and skills, reduced caregiver burden, reduced caregiver depression, increased access to social supports, delayed/reduced nursing home placement of persons with dementia, and reduced hospital admissions/emergency department visits of such persons.

LeadingAge Report on Long-Term Services and Supports Aging advocacy organization LeadingAge has “A New Vision for Long-Term Services and Supports.” In its report the organization observes that “our LTSS systems are plagued currently by inadequate funding, coordination, and choice. Its current design places enormous pressure on families, and leaves older adults disconnected and depressed. Most alarming, the system is ill prepared to meet the needs of a rapidly growing older population.” LeadingAge’s proposed approach entails a universal approach to coverage, a catastrophic benefit, and a “managed cash” benefit structure.

MEDIA WATCH

HHS Suppression and Destabilization of ACA Individual Marketplace The Washington Post’s Juliet Eilperin, surveying the healthcare landscape after the demise of the Graham-Cassidy Obamacare repeal/replace bill, paints a grim picture of the individual health insurance marketplace. “With the fifth enrollment season set to begin November 1,” Halperin writes, “advocates say that HHS has done more to suppress the number of people signing up than to boost it. HHS has slashed grants to groups that help consumers get insurance coverage, for example. It also has cut the enrollment period in half, reduced the advertising budget by 90% and announced an outage schedule that would make the HealthCare.gov website less available than last year.” In the same article, Eilperin also reports that Republican generated state Medicaid waiver requests designed to stabilize individual marketplaces, including Iowa’s and Oklahoma’s, have garnered President Trump’s ire. As for Minnesota, “CMS has approved its waiver request in a way that upends the state’s plan to maximize health coverage for its residents. Minnesota applied to CMS for permission to establish a reinsurance program, which can lower premiums by giving insurers a guarantee that they will have limited financial exposure for customers with particularly high medical expenses. The agency informed Minnesota on September 22 that it would provide $323 million for the program since the lower premiums would mean savings to the federal government on subsidies to Minnesotans for ACA health plans. But, CMS added, the federal government would also cut $369 million in funding for a separate program aimed at residents who are between 138% and 200% of the federal power poverty level and don’t qualify for the same subsidies.”

Trump Administration Seeks to Eliminate Healthcare Rules Complementing the Post story, Politico’s Adam Cancryn, while writing before HHS Secretary Tom Price’s resignation, offered a view of a united administration health policy team seeking to “rewrite or outright eliminate a slew of regulations on doctors, hospitals, and other providers.” Regulations affecting medical equipment companies, physician payment, Medicaid managed care, and residential care facilities are all under review, Cancryu reports; “the intent is plain: to loosen federal controls and give states more flexibility to run their own programs.”

Joint Commission Hospital Seal of Approval and Inspection Reports Criticized While the Joint Commission’s recent Sentinel Alert regarding transition handoffs (see Federal Legislation and Policy section) most likely will earn accolades, the accreditation body also found itself the subject of a different sort of coverage, namely, a harsh Wall Street Journal story alleging that it rarely withdraws its hospital seal of approval in the face of serious safety violations. Stephanie Amour’s extensive report prompted a stern response from Senate Judiciary Chairman Charles Grassley (R-Iowa). In a letter to CMS administrator Seema Verma, Grassley endorsed making facility inspection reports public and indicated he would support whatever statutory changes were needed to accomplish such a result.

Family Caregivers Struggle with Complex Medical Tasks Melissa Bailey adds real-life vignettes of the demands of caregiving in her account of the increasing responsibility and complexity entailed in family support of ailing family members. Bailey focuses particularly on the risks of life-threatening infections stemming from home care of child catheters known as central lines. “An external central line, which ends outside the body, must be cleaned every day. Caregivers have to scrub the hub at the end of the line for 15 seconds, then flush it with a syringe full of saline or anticoagulant. If caregivers don’t scrub properly, they can flush bacteria into the tube and—whoosh—the bacteria enters a major vein close to the heart. One father, noting that the hub looked dirty, scrubbed with a pencil eraser, sending three types of bacteria into his child’s blood stream. As another father put it, ‘Learning the cleaning steps was very nerve-racking. You can scrub and scrub and scrub and it doesn’t feel like it’s clean enough’”

The CareMap from Atlas of Caregiving Into the toolbox of support mechanisms for family caregiving comes the CareMap, a hand-drawn picture, as described by Kaiser Health News reporter Judith Graham, showing the people one cares for as well as the people surrounding those individuals and one’s own sources of support. The CareMap is a product of the Atlas of Caregiving, whose goal according to project originator (and Family Caregiver Alliance/National Center on Caregiving board member) Rajiv Mehta, is an effort to understand the ecosystem of family caregiving, the relationships that surround caregivers and that shape their experiences. “One family caregiver might be at odds with her siblings, but have a close group of friends she can turn to for emotional support as she cares for a disabled husband. Another might be divorced but have a son living at home who can help with practical responsibilities as he cares for his mother with Parkinson’s disease, who moved in a year ago. Yet another, a couple in their 60s both struggling with serious illness may rely primarily on their three children, all living nearby, but have few friends.” AARP has undertaken to test the mapping tool in six cities by the end of the year.

The Advocacy of ‘Little Lobbyists’ in ACA Repeal Defeat The fallout from the fate of the Graham-Cassidy bill includes many postmortems, but as New York Times reporter Robert Pear put it, “in the long-running battle over healthcare, doctors, hospitals, and insurance companies spent millions of dollars this year. But some of the most effective advocacy came from pint-size petitioners who spent nothing at all: children with serious medical needs who told their stories to members of Congress. The American medical Association, the American Hospital Association, America’s health insurance plans, and dozens of other industry groups lined up against the Republican repeal bills. But, lawmakers said, what really sank the legislation was the outpouring from constituents, and few were as influential as the little lobbyists who pleaded for their own lives and the lives of other children with special needs. ‘They are fantastic,’ said Sen. Tim Kane (D-Va.). ‘These kids and their parents demonstrated how catastrophic Medicaid cuts would be. They really added value to the debate and helped us win.’”

Single-Payer Healthcare Analysis of Proposals One development after eight months of Congressional healthcare battles has been the emergence of new energy behind proposals to enact universal or single-payer healthcare. “What We Talk About When we Talk About Single-Payer” is Signe Peterson Flieger’s Health Affairs blog post that analyzes all aspects such a system would entail. “A single-payer healthcare system in the United States would eliminate the private health insurance system as we know it, squeeze costs out of the system by reducing administrative expenses and instituting global budgets, and provide universal coverage, while at the same time maintaining the independence of providers. However, it is worth noting, one person’s waste is another person’s job. Not surprisingly, significant political barriers to transitioning to such a system remain—the persuasive rhetoric to generate fear of government run healthcare, the power of the health insurance lobby, and opposition by some healthcare provider groups—further reducing the likelihood of a feasible single-payer proposal anytime soon. In the meantime, more incremental strategies such as adding a public option to state health insurance exchanges, lowering the age of eligibility for the current Medicare program, or enabling people to buy into Medicare may make for less contentious proposals. However they will not confer the cost saving advantages of a truly single-payer system.”

Atul Gawande in The New Yorker: ‘Is Health Care A Right?’ In his latest New Yorker article, surgeon and essayist Atul Gawande tackles one of healthcare’s mega issues: “Is Health Care A Right?” he asks and then proceeds to approach the topic by recounting his conversations with men and women he grew up with in the Appalachian foothills town of Athens, Ohio. The result, both intimate and riveting, is a guided tour through conflicting stories of both the need for universal healthcare and the widespread belief in individual responsibility for life’s necessities. “In 2013, Gawande writes, “before the implementation of the ACA, Americans were asked whether it was the government’s responsibility to make sure that everyone had healthcare coverage, and 56% said no. Four years after implementation, 60% say yes.” The twists and turns of opinion on the mega issue—whether healthcare is a right—are illustrated in Gawande’s description of one Athens resident, Mark. “He no longer opposed the requirement that people get insurance coverage. Fire insurance wouldn’t work if people paid for it only when their house was on fire, and health insurance wouldn’t work if people bought it only when they needed it. He was no longer interested in repealing protections for people like him. In this, he was like a lot of others. ‘But that doesn’t mean I have to sign on for full-blown socialism—cradle-to-grave everything,’ Mark said. ‘It’s a balance.’” Concludes Gawande: “Our willingness to trust in efforts like health reform can be built on experience, as happened with Mark, though we must recognize how tenuous the trust remains. Two sets of values are in tension. We want to reward work, ingenuity, self-reliance. And we want to protect the weak and vulnerable—not least because, over time, we all become the weak and vulnerable, unable to get by without the help of others. Finding the balance is not a matter of the achieving policy perfection; whatever program we devise, some people will put in more and some will take out more. Progress ultimately depends on whether we can build and sustain the belief that collective action generally results in collective benefit. No policy will be possible otherwise.”

FAMILY CAREGIVER ALLIANCE ANNOUNCEMENTS

Statement on Defeat of the Graham-Cassidy Bill to Repeal the ACA from Executive Director Kathleen Kelly  The latest effort to repeal the ACA was defeated just as the CBO released its analysis that millions of persons would lose coverage among other deleterious consequences of the Graham-Cassidy bill. Aside from repealing basic healthcare protections, this effort would have had an enormous impact on caregiving families as it severely limited Medicaid services through block grants, and thus would have curtailed community-based services and supports. Again, advocates from the disability and aging communities rallied protests against policies that would harm those with disabilities, seniors, children, and women. We thank all those who contacted their Senators to voice their concerns about this bill. Read more

California Task Force on Family Caregiving Seeks Organizations Providing Direct Services to Family Caregivers for Survey The California Task Force on Family Caregiving—appointed by the California Legislature in August 2016 under ACR 38—would like to learn more about programs serving caregivers throughout the state. If your organization provides direct services to family caregivers in California, we strongly encourage you, or someone with knowledge of these services, to complete the survey. Your responses are critical to improving services to family caregivers in California. This survey will take an estimated 30 minutes to complete. All responses are recorded anonymously, and the information provided will be reported in aggregate. However, you may choose to add your email address to enter a drawing to receive 1 of 10 debit gift cards worth $25 each. Please feel free to forward the survey URL to organizations you know of that this applies to. If you have any questions about participating, or about the Task Force, please email tffc@usc.edu.

FCA/NCC RESEARCH REGISTRY

Professional Studies

Invitation for Patients Living With Alzheimer’s Disease and Their Caregivers — Paid Research Opportunity An Early Alzheimer’s Research Study with a New Aim and Target Supporting Family Caregivers of Persons with Urinary Incontinence

Graduate Studies

I hate/love it when people say____: research project on public perception of caregivers

CREDITS Contributing to Caregiving Policy Digest are Alan K. Kaplan, attorney and health policy consultant, Kathleen Kelly, and Francesca Pera (editing and layout). Send your feedback and/or questions to policy_digest@caregiver.org .

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