Calling All Waivers

As Caregiving Policy Digest reported last month, newly confirmed HHS Secretary Tom Price and CMS Administrator Seema Verma wasted no time writing to the nation’s governors to encourage their submission of Medicaid waiver proposals. The response was not long in coming. A number of states—Wisconsin, Arizona, Kentucky, and most recently Maine—have entered various stages of the application process for receiving section 1155 Medicaid waivers. Emerging common elements include: recipient work,  financial contributions, and drug testing as conditions for enrollment. All are controversial, with Health Affairs bloggers Leighton Ku and Erin Brantley weighing in particularly on work requirement requests. Their conclusion: “Although more than half of Medicaid adult recipients work, our analysis shows that a substantial population, primarily women and those with low education levels, would be at risk of losing health coverage if mandatory work requirements were added. Many of those who might lose insurance have substantial health needs.”

Impact of Medicaid Expansion in State Budgets

While debate over the future of Medicaid funding continues to swirl in April, a new study by Benjamin Summers and Jonathan Gruber published in Health Affairs cast light on the initial impacts of Medicaid expansion on state budgets under the ACA. The authors conclude that “there were no significant increases in spending from state funds as a result of the expansion, nor any significant reductions in spending on education or other programs. Our findings indicate that some of the original state budget concerns regarding Medicaid expansion have not yet materialized. However, given states’ heavy reliance on the increase in federal funding, any substantial reduction in federal Medicaid support to states would undoubtedly undermine the coverage gains achieved to date and would likely put other state budgetary priorities at risk.”

ACA Subsidies to Continue … For Now

As part of the late April efforts to avert a budgetary-induced government shutdown Democrats and Republicans apparently reached a tacit agreement to finesse the contentious issue of ACA subsidies for low-income insurance enrollees. As Politico reported, “the solution to the row appears to be to continue the status quo: paying for the subsidies outside of the congressional spending process.”

More ACA: ‘Death Spiral’ or Profitability?

Amid the heated April debates over the Republican ACA moves, the argument over whether the existing legislation was engendering an insurance “death spiral” reverberated widely. Countering the “death spiral” notion was a Standard and Poor’s Global Ratings finding that—in the words of a Center on Budget and Policy Priorities brief—“major individual-market insurers made significant progress toward profitability in 2016. With sizable premium increases in place for 2017, the S&P analysis concludes these insurers have now largely recovered from initial underpricing for the ACA marketplaces, and their individual market premiums are now generally in line with costs.” Echoing this analysis, Kaiser Family Fund senior vice president Larry Levitt took to the JAMA Forum to assert that “there is very little evidence that the ACA is imploding, exploding, or collapsing.”

In The Weeds: CMS Proposed Market Stabilization Rules to Stabilize the Exchange Insurance Markets

For its part the Trump administration took to the Federal Register on April 18 to announce a series of steps designed ostensibly to “stabilize” the ACA marketplace. Professor of Law Timothy Jost provided a very detailed summary and analysis in a Health Affairs blog post. Noting that the proposed regulations had garnered over 4,000 responses during an abbreviated 20 day comment period, Jost observed that “insurers generally supported the proposed rule. Consumer advocates, on the other hand, challenged a number of the proposed rules provisions, contending that the proposed changes were not only contrary to the interest of consumers, but might well contribute to destabilizing rather than stabilizing the exchanges.

Urgent Need for Nursing Home Oversight to Prevent Abuse in Nursing Homes or Would You Place Your Mother There?

While nursing home regulatory developments—specifically, implementation of the comprehensive September 2016 updating of patient care requirements—have been receiving considerable advocacy group attention, four of those groups have issued a joint statement declaring an Urgent Need for Effective Oversight to Counter Persistent Abuse and Neglect of Nursing Home Residents. “Unfortunately,” the advocates report, “though there have been improvements in nursing home care since passage of the landmark 1986 Reform Law, [problems] persist. … Quality of life standards—which provide for basic human dignity and respect—are too often ignored with impunity.”

AARP Public Policy Institute — source of information about specific impacts of ACA repeal including Medicaid HCBS.

American Bar Association — the Health Law Section has created a Health Reform Task Force to monitor the potential repeal and replacement of the ACA.

Center on Budget and Policy Priorities — the Center is a leading source of analyses of federal budgeting developments affecting all sectors of the economy including health care. Just launched: Sabotage Watch: Tracking Efforts to Undermine the ACA. Depressing title — good information.

CLASP (formerly the Center for Law and Social Policy) — the Center is a long time provider of material regarding policies affecting low-income citizens

Commonwealth Fund — the foundation publishes in-depth materials regarding federal health programs.

Families USA — the organization is a longtime advocate for health care reform and universal health care coverage.

Health Affairs Blog — the leading health policy journal offers an open source blog site that contains frequent ACA-related posts.

Justice in Aging — the organization publishes detailed analyses of developments affecting low income seniors, with particular emphasis on Medicaid proposals

Kaiser Family Foundation — the foundation issues daily bulletins and frequent analyses concerning health policy developments; it has recently added an interactive web page tracking all current ACA legislative activity.

National Health Law Program — protects and advances the health rights of low-income and underserved individuals and families.

State Health Reform Assistance Network — Extensive resources related to the economic impact of Medicaid expansion on state budgets. The materials also examine the potential results of ACA repeal or the imposition of Medicaid spending caps.

AB 1656 Certified Nurse Assistant Training

• In the year 2000, California’s Legislature introduced the Caregiver Training Initiative to coach and hire certified health care providers. This bill, AB 1656, seeks to increase the effort of providing long-term care to individuals by establishing a grant program to train and certify nurse assistants.
  

AB 1335 Long-Term Health Facilities

• AB 1335 requires the Department of Public Health to make changes by redefining a class “AA” violation to a class “A” violation in long-term care (LTC) facilities, as a substantial factor. This bill defines a substantial factor as the cause of a death if the death would have not occurred if that factor didn’t exist. The effect of this bill would change the licensure and regulations for long-term care health facilities.
  

HB 2425 Caregiver Aftercare Instructions Regarding the Patient

• HB 2425 seeks to require a patient in the hospital the ability to designate a caregiver, for that individual to receive instructions for providing aftercare services to the patient. This bill defines aftercare as caregiving services to a person who is discharged from the hospital, and defines a designated caregiver as the individual whom a patient authorized to receive assistance from. 
  

SB 322 Caregiver Advise, Record & Enable (CARE) Act 

• SB 322 is an act to propose the practice of the CARE Act for North Carolina. The CARE Act involves services for individuals and caregivers to provide a better an opportunity of better quality caregiving.
  

HR 202 Cancer Caregivers Recognition Month 

• The Assembly of Pennsylvania introduced HR 202 to designate the month of May 2017 as “Cancer Caregivers Recognition Month,” to honor the significant roles caregivers provide in cancer patients’ lives.
  

Contributor’s note: The future of the ACA, AHCA, and health care reform in general remained murky as April gave way to May. The ongoing debate fueled daily publications of left right advocacy and analysis with almost no compromise approach visible.

Think Piece: Support for Subsidies

Contributing to this debate, market oriented health economist Stuart Butler, writing in a Brookings Institution opinion piece, analyzed the prerequisites for producing a private (i.e. non-public) healthcare system for the United States. His conclusion: “despite the political grandstanding, both House Republicans and Obama’s Democrats concluded that for Americans to have access to affordable market-based private insurance, there has to be a subsidy that is available to non-taxpayers as well as taxpayers, that reflects local costs, and that provides most help for low income households. ... It should be no surprise then that Republicans in both houses came to exactly the same conclusion when, in 1995, they constructed a market-based alternative to the Clinton health plan—the last time the GOP in both houses took the steps needed to design a comprehensive legislative health reform proposal.”

Conservative Viewpoint of Single-Payer: It’s Not What Your Think

Meanwhile, not all support for a single-payer health care system emanated from the liberal side of the political divide. Writing in the New York Post, Scalia Law School (George Mason University) professor and conservative F.H. Buckley penned an unexpected op-ed arguing Why Trump Should Advance Single-Payer Health Care. “What Trump said he wanted,” Buckley asserts, “was a plan that would leave no one uninsured. The simplest way to do this is universal healthcare, on the Canadian model, with the right of individuals to purchase, out-of-pocket, a Cadillac plan on top.”

Sometimes Advance Directives Are Not Enough

Paula Span’s New York Times periodic feature The New Old Age tackles a troubling issue in The Patients Were Saved. That’s Why the Families are Suing. Span reviews several cases where advanced directives concerning end-of-life care were disregarded by healthcare providers who proceeded to administer unwanted life-prolonging actions. “Physicians and hospitals have grown accustomed to the threat of lawsuits when they fail to save a patient’s life,” writes Span. “Now some face legal action for failing to let a patient die.” Historically, observes Thaddeus Pope, director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minnesota, the practice has been: “if in doubt err on the side of aggressive life-sustaining treatment.” But says Pope, “Courts increasingly accept that unwanted life is also a harm. Families were showing up at plaintiffs’ attorneys’ offices in the past and getting turned away. Now plaintiffs’ attorneys are taking these cases.”

Before You Quit Your Job for Caregiving, Read This

Caregiving’s often crippling financial toll is illuminated in a sobering article by Minneapolis Star Tribune reporter Katy Reed. Reed offers several vignettes of family members whose out-of-pocket expenses and lost work options left them in dire straits after periods of assisting loved ones. “For people whose incomes were low in the first place, caregiving can be devastating,” Reed writes. She profiles Jasmine Davis, who, after giving up a full-time job to care full-time for her stroke-disabled mother, found herself and her children homeless after her mother’s death, “coping with both poverty and grief. ‘I wouldn’t wish this on anyone but I also don’t regret the decision I made,’ said Davis. [My mother] was my best friend—I was her firstborn, her only girl.’”

Engagement of High Need Patients in Care

In a Commonwealth Fund publication, Brian Schilling presents several detailed vignettes describing patient engagement efforts designed to help “high need” patients cope with complex illnesses. Los Angeles, Chicago, and Minneapolis form the backdrop for programs that “emphasize a relationship building and focusing more intensely on meeting patients non-medical needs outside the doctor’s office. These programs typically pair patients with a dedicated care coordinator, who may or may not have extensive medical training, but knows the system well enough to help patients navigate it. Importantly, these care coordinators also typically know how to advocate on behalf of patients for housing, mental health, legal, nutritional, transportation, and other nonphysical needs.”

Privacy in the Exam Room: A Delicate Balance

Journalist Lisa Ward, in a Wall Street Journal article, addresses the “delicate question of sharing medical information with adult children.” Should a son,” asks Ward, “accompanying his mother on a visit to her primary care physician reveal that she is struggling with depression? Is it the business of an elderly man’s family that he is using Viagra? Family members involvement can certainly help a loved one receive better care,” writes Ward, “since they can act as a sounding board, keep track of important details, and help with logistics. Crucial information also may come from the adult child or advocate. But by including their adult children, elderly parents lose the exclusive right to decide who is privy to their medical information and how much other people should know about potentially sensitive diagnoses, procedures, or prescriptions.”

New Stress for Families: Shortages of Home Health Aides

Judith Graham reports in the Washington Post that “acute shortages of home health aides and nursing assistants are cropping up across the country, threatening care for people with serious disabilities and vulnerable older adults.” In Pennsylvania, Cheryl Dugan, mother of a profoundly disabled son, finds that “the instability of this system is terrifying.” Dugan, whose son receives round-the-clock care from paid caregivers, reports that “we’ve gone through hundreds of workers and at times I wasn’t sure if he was being fed well are treated well. It’s exhausting mentally and physically. You live with a constant sense of crisis.”

Post-Intensive Care Syndrome

Writing in the New York Times, critical care physician Dr. Daniela Lamas places a spotlight on the significant problem posed by Post-Intensive Care Syndrome, a constellation of symptoms often experienced by survivors of critical illness. “As many as one in three patients sick enough to require a ventilator might develop symptoms of post-traumatic stress disorder,” Lamas writes. “Anxiety and depression are equally common, if not more so. Others survived critical illness but find themselves forgetful and easily confused, facing cognitive problems that are similar to those people with mild Alzheimer’s disease or traumatic brain injury.” Lamas points to an undertaking by the Society of Critical Care Medicine that is funding ICU survivor support groups at hospitals across the country and abroad. Groups focus on facilitating the sharing of information among patients, family members, and attending physicians regarding potential post-discharge challenges.

Profiles in Advocacy: Longtime Advocates for Single Payer System

Drs. David Himmelstein and Steffi Woolhandler, two of the longest active advocates for health care reform, including a single-payer insurance system, are featured in a recent, admiring Lancet profile. “Early in her career, when treating a patient,” writes Richard Lane, “Woolhandler had her eyes opened to the inequities of the US health system. ‘The woman’ Woolhandler recalled, ‘had just given birth, but had overwhelming tuberculosis with a whiteout of her lungs which could have been diagnosed a year earlier. She had not sought treatment having no insurance coverage. I was unable to save her life.’”

Maybe Laughter is the Best Medicine

Forty-one years ago the late Saturday Review magazine editor and peace advocate Norman Cousins authored a notable article in the New England Journal of Medicine entitled Anatomy of an Illness as Perceived by a Patient. Cousins, who later discussed the article in an interview now available on YouTube, gave an account of a serious illness he had contracted while overseas, an illness that he believed he had overcome in part by opening himself to daily doses of laughter. “I found,” said Cousins, “that 20 minutes of belly laughing gave me two hours of pain-free sleep.” Now Bruce Horovitz, writing in Kaiser Health News, revisits the role of humor, this time as an antidote at the end-of-life for both the terminal patient and family members. “Laughter is the best medicine,” he quotes Mary Kay Morrison, president of the Association for Applied and Therapeutic Humor. “Humor is particularly important when folks near end-of-life situations. Turning 70, Morrison says, “hasn’t stopped me from engaging in activities specifically to make me laugh, like hopping on my pogo stick. While death cannot be cured, your frame of mind is something that you can change.”

One hospital in the nation’s capital is taking laughter as medicine seriously. Johns Hopkins Sibley Memorial offers a “Laugh Café,” a participatory group, in the words of a recent hospital Senior Association newsletter, “where you will bring your favorite jokes, humorous stories, riddles or personal tales and provoke others (and yourself) to laughter. Cost of entry: at least one joke.”

Medicaid Coverage for Telemedicine Services: State Breakdown

The Center for Connected Health Policy has issued a comprehensive report detailing states’ Medicaid coverage of telemedicine services. The report, documenting the great variety of such coverage, finds that all but two states—Massachusetts and Rhode Island— provide some degree of Medicaid support.

Physician Community and Hearing Loss

Researchers have published an intriguing literature review looking at a possibly significant barrier to physician-older patient communication: hearing loss. The authors, finding a paucity of research analyzing this impediment, call for greater attention to an overlooked “highly prevalent, important, and remediable influence on the quality of communication.”

New Updates on Importance of Medicaid LTSS

AARP’s Public Policy Institute has published two documents dealing with Medicaid Long-Term Services and Supports (LTSS). The first—an updated version of an older policy paper—points out that “few people can qualify for or afford private long-term care insurance.” For those who need paid assistance, few options are available to help them pay for the high cost of LTSS, leaving them to rely on Medicaid as a last resort once they have spent their life savings paying for care.” In the second, a fact sheet, PPI zeroes in on the specific needs of aging women, observing that, while LTSS are vital for everyone, most women will need such services in their lifetimes.

Family Caregivers Really Do Make a Difference in Transition Care

In a study providing support for the AARP-written CARE Act, researchers at the University of Pittsburgh have published a meta-analysis focusing on caregiver integration during discharge planning and its impact on hospital re-admissions. The study, the authors conclude, demonstrates “that integration of informal caregivers in the discharge planning process for older adults in hospitals and nursing facilities reduces hospital re-admissions. Integrating caregivers into discharge planning yielded a 25 percent less risk of 90 day readmission and a 24 percent less risk of 180 day readmission than usual care.” Current health policy activity regarding the engagement of caregivers in discharge planning, the authors further observe, “is trending in the direction of recognizing the value of including caregivers on greater patient health outcomes and lower health services use. More than 30 states and the District of Columbia have passed CARE legislation that requires hospitals to designate and provide instruction and training to informal caregivers.”

Two Papers on Improving Care for Persons with Serious Illness

Members of a National Academy of Medicine Roundtable have authored a discussion paper focusing on “community-based models of care delivery for people with serious illness.”  The paper, describing varying approaches to providing healthcare to this population, identifies both guiding principles and core competencies that should underlie the development of high-quality care programs.

In a related effort, the Bipartisan Policy Center has issued a host of recommendations for improving care for high need, high-cost Medicare patients. The document stresses that “frail and chronically ill Medicare beneficiaries who are not dually eligible for full Medicaid benefits could often greatly benefit from the integration of non-Medicare covered social support services into the medical care model offered to them in the Medicare program. For instance, non-Medicare-covered support services such as in-home meal delivery, non-emergent transportation to medical appointments, and targeted case management services have demonstrated the propensity for reducing the need for avoidable hospitalizations. These interventions can be particularly valuable for Medicare beneficiaries who are not dually eligible for full Medicaid benefits, reside in a community setting, have three or more chronic conditions, and have functional or cognitive impairment.”

FCA’s Spring Appeal is Underway

Do you look forward to Caregiving Policy Digest? Or Connections, our enewsletter for family caregivers? Have you checked out FCA CareJourney, a new innovation (online and free) bringing together FCA’s catalog of fact and tip sheets, videos and webinars, and support? For 40 years FCA has been in the forefront of caregiver advocacy, so Spring into Spring and help FCA help family caregivers by visiting www.caregiver.org/donate today!

House-Passed Trumpcare Bill is a Loss for Family Caregivers, Disabled, and Older Americans

Editor’s note: The following article was posted on the FCA Blog by Executive Director Kathleen Kelly following last week’s House passage of the AHCA.

It is a sad day indeed that the Republican-led majority in the House of Representatives voted today to pass the American Health Care Act that effectively repeals the Affordable Care Act. This will mean millions of Americans — especially those with pre-existing conditions — will lose their health care insurance. It shreds the Medicaid safety net for millions of frail elders, disabled adults, and special needs children.

Here are some specifics:

• 20+ million Americans will lose coverage
• Millions more will pay more for less coverage and higher out-of-pocket costs
• $800+ billion will be taken from Medicaid services that provide basic health care and long-term care for the elderly, disabled adults, and special needs children
• Lets employers and insurers impose lifetime caps under employer-based health plans
• Eliminates national requirements for basic benefits like maternity care, women’s health, and mental health treatment
• Transfers $1 trillion from health care subsidies and Medicaid services to give tax cuts to the wealthy

• Caregiving Across the Lifespan
• University of Wyoming — Caregiving Relationships Study
  

• Investigating general psychological well-being in primary caregivers of patients with Major Depressive Disorder
• Improving medication adherence in older people with dementia through a technological design
• Online survey for family caregivers of people with dementia
• Survey of Hospice, Palliative Care and End-of-Life Care Providers
• Caregiver to Ill, Wounded or Disabled Veterans
• 5-10 Minute Dissertation Survey for Caregivers Between 18 And 64 Years Old
• Predictors of Psychological Well-Being Among Significant Others of TBI Survivors
• Former caregivers of people with dementia — online survey