Vol. 17, No. 6
July 13, 2017

Join FCA at IAGG 2017

Be sure to visit Family Caregiver Alliance and Benjamin Rose Institute on Aging at the IAGG World Congress in San Francisco, July 23–27, at exhibit booth 325. Learn more about FCA’s partner project with Benjamin Rose and other projects, including FCA CareJourney. For more information on CareJourney, please join Executive Director Kathleen Kelly for the symposium “Do Online Support Programs Click With Family Caregivers? Evaluating Usage and Satisfaction” on Tuesday, July 25, 6 p.m.–7:30 p.m. in Salon 7.

And Still They Persist

The activities around the House and the Senate health care bills, in particular the Senate BCRA, were front and center last month and through July. Even at this writing the second set of revisions on the Senate bill are now on their way to the CBO for scoring. The end result is still more citizens will lose their health insurance and Medicaid will suffer devastating cuts that mean an uncertain future for those with health and long term care needs. With public polling approval for the Senate health bill at 17%, public protests and demonstrations in the offices of Congress and in home districts and with all sectors of the health care system lined up against the bill, one thought comes to mind: And still they persist. And so should we in opposition to this bill.
 Kathleen Kelly, Executive Director
During the coming weeks, as Congress and the country continue debating the future of the Affordable Care Act, fast moving developments will, of course, continue to be reported and analyzed by major media websites, as well as by FCA’s tweets (follow @CaregiverAlly) and the following organizations listed here.

Federal Health Care Proposals

In an action separate from its overall ACA efforts, the Republican Congress has taken the first step to specifically dismantle the law’s individual mandate provision. The House Committee on Appropriations has approved a measure, as part of the annual Treasury and IRS spending bill, that would prohibit the IRS from enforcing the mandate’s ongoing implementation. As reported by the New York Times correspondent Robert Pear, “Republicans in the Senate and the House generally agree on one thing,” in the words of Representative Michael C. Burgess, Republican of Texas and a physician: “the individual mandate has no place in a free society.” For its part the Congressional Budget Office has said that “repealing the individual mandate penalty, by itself, could lead to higher premiums. And many insurers site uncertainty about the mandate as a reason for seeking rate increases for 2018.”

Efforts are underway to address a caregiving issue affecting war veterans. VA caregiver services are currently available only for vets injured on or after September 11, 2001. As reported by Joe Davidson in the Washington Post, “under the Program of Comprehensive Assistance for Family Caregivers, service providers for vets injured since the Pentagon and the World Trade Center attacks can get stipends, travel expenses and training among other benefits. VA also monitors the quality of care provided by the caregivers.” The Department of Veterans Affairs, in an open letter signed by 40 organizations, has urged Congress to enact legislation to more equitably and fully empower family caregivers of severely disabled veterans from all wars.

Lending support to the viability of ACA’s provisions affecting the individual insurance marketplace, CMS has released a report on the impact of the laws transitional insurance payments and permanent risk adjustment transfers for 2016. “Transitional reinsurance and permanent risk adjustment programs,” the report finds, “functioned smoothly for the 2016 benefit year, as the (ACA) market continued to grow. Both the transitional reinsurance program and permanent risk adjustment program are working as intended in compensating plans that enrolled higher risk individuals, thereby protecting insurers against adverse selection within a market within a state and supporting them in offering products that serve all types of consumers.”

“Turmoil in the individual insurance market: where it came from and how to fix it” is the title of a Brookings Institution article in the New England Journal of Medicine. The authors lament recent executive actions that they argue have undermined that marketplace. “Although it is too late to prevent all damage in 2018, prompt and constructive action can limit it. Most urgently, Congress and the president can immediately appropriate funds to reimburse insurers for cost-sharing reductions and rule out other disruptive administrative or legislative changes.”

In a comprehensive analysis of a provision in the House passed AHCA, Kaiser Family Foundation’s Gary Claxton, Karen Pollitz, and Larry Levitt dissect the proposed Patient and State Stability Fund that would make up to $123 billion available to states between 2018 in 2026. Taking advantage of the fund to offset the negative fiscal impacts of the ACA, however, the authors conclude, states would face difficult trade-offs. “If states use most of the grant funds to reduce premiums, as CBO has assumed, there would be no funds left to address other needs, such as helping lower-income and older people who face higher premium and out-of-pocket costs, and healthcare providers who would be serving a growing number of uninsured people. States would also have the options of reducing covered benefits or allowing insurers to increase premiums for applicants with pre-existing conditions, each of which would lower premiums but would raise out-of-pocket costs for people with health problems.”

An analysis of “The Financial Impact of the (AHCA) Medicaid Provisions on Safety Net Hospitals,” published by the Commonwealth Fund, concludes that “beginning in 2020 the financial status of these hospitals will deteriorate as Medicaid coverage is reduced and the per capita spending limits proposed in the AHCA grow. By 2026 total margins will drop to 0.5% compared with estimates under current law of 2.9% — representing an 83% reduction in the hospitals’ net income. Small rural safety net hospitals and safety net hospitals treating the largest proportion of low income patients would be hurt the most.”

The Center on Budget and Policy Priorities’ Jacob Leibenluft addresses the possibility that future Medicaid reductions enacted this year could be revisited in the future. Unlikely, Liebenluft says: “Once Congress both changes Medicaid’s basic structure and enacts large annual savings ... those structural changes would create a political dynamic that could lead to even larger cuts in the future. While pundits may be right that the bill’s Medicaid cuts will unfold differently over time than anticipated today, the cuts would likely end up bigger, not smaller, than those enacted now.”

Care Delivery: Discharge Planning, Care Transitions, and Vulnerable Patients

Andis Robeznieks, writing in Hospitals and Health Networks, describes the award-winning CareLink Care Now program — the Wilmington, Delaware Christiana Care Health System  information technology enabled network of care coordination support services. The network, which coordinates care for almost 75,000 Medicare beneficiaries, is credited with helping the system to achieve a 30% reduction in ninety-day readmissions. The CareLink Care Now team includes physicians, nurses, social workers, respiratory therapists and pharmacists. “No matter how much organizations prepare patients and families at discharge,” program medical director Dr. Tabassum Salem says, “things can unravel once they get home and cope with issues such as behavioral health problems, lack of transportation, and the realization that the family lacks the financial ability to pay for medications or devices.” 

Looking at another aspect of transitional care, researchers have found that a home health visit within a week of a discharge from a skilled nursing facility to home “was associated with a reduced hazard of thirty-day hospital readmission; the positive result, however, did not occur when physician visits were measured. 

Sun Health in Sunrise Arizona, one of 18 healthcare organizations completing CMS’s Community-Based Care Transitions Program demonstration project, achieved a 56% reduction in hospital readmission rates, the highest such reduction among the participants. Reflecting on the outcome of the project, Sun Health’s Jennifer Drago observed that “we looked at the social determinants of health, such as medication affordability, transportation, health literacy, and social isolation–and linked people to resources in the community from which they might benefit.” While most of the programs in the demonstration project had social workers follow up with patients after discharge, (we) instead relied on nurses to serve as transition coaches. We felt strongly that it should be a nurse who goes into the home. For patients who are struggling with their disease, it helps to have a nurse who can help them understand what is going on and make sure that some of those (negative) social determinants don’t occur.” 

A troubling outcome of the increase in hospital “observation stays” is reported in a study by Yale researchers: “as many as one in five older Medicare patients returns to the hospital after an observation state, or short short term outpatient day. This high rate of revisiting the hospital points to a hidden vulnerability among these patients, and suggests that changes in care might be needed.” 

A Commonwealth Fund issue brief examines six home-based primary care practices and concludes that “home-based primary care offers a promising way to optimize care for many of the nation’s sickest and frailest patients — those who are homebound or face functional limitations that prevent them from obtaining routine care in physicians’ offices. The US population age 85 and older is expected to quadruple by 2050; there are likely to be many more frail older adults who could benefit from home-based primary care. In addition many younger adults, including those with disabilities and behavioral health conditions, could also benefit from this approach.” 

The National Academy of Medicine’s report series “Accounting for social risk factors in Medicare payment” as the focus of a daylong discussion that was webcast and is available for online viewing. Speakers delved into various aspects of measuring and reporting social risk factors, and strategies for supporting better outcomes for beneficiaries experiencing such factors. 

A number of distressing findings about caregiving daughters are reported in a new survey conducted by Home Instead Senior Care. Data from 1001 working women aged 45 to 60, not self-employed and providing care for a parent or in-law, found that “half of working female caregivers feel they have to choose between being a good employee and being a good daughter. In addition, a quarter of working daughters report they find a workplace stigma in being a caregiver, and 23% have found that their supervisors unsympathetic.” Home Instead network also announced the establishment of a public education program, Daughters in the Workplace, to help working family caregivers feel empowered to talk to their employers about their needs and identifying caregiving support that may be available.” 

Andis Robeznieks, writing in Hospitals and Health Networks, offers an extensive review of recent discharge planning programs, including highlights of successful efforts in such places as Winston-Salem, North Carolina’s Novant Health and the University of Virginia Health System in Charlottesville Virginia. Robeznieks also credits the positive impact of the AARP-championed CARE Act, as well as  discharge planning and transitional care programs evolving out of such initiatives as Project Boost. 

Several programs targeting the costs of caring for high risk patients are featured in a report by Modern Healthcare’s Shelby Livingston. In Oregon, for example, Care Oregon launched a “health resilience program” to break down the many barriers to care experienced by its high risk Medicaid members, whether emanating from housing, food or transportation concerns. “By meeting patients out in the community and in the home,” according to Rebecca Ramsay, executive director of Care Oregon’s population health partnerships, “ health resilience specialists bring the real story of what’s going on in this person’s life back to primary care so the doctors know what the barriers are and can take those into account when they are developing a care plan for the individuals,”. Meanwhile, Chicago’s Cook County Health and Hospital system deploys  coordinators who work out in the field with patients and their care team to identify goals, desired outcomes and tasks a patient may complete. Livingston also reports that CountyCare is set to launch two programs this year that aim to help members facing housing and food insecurity. “County care estimates that a fifth of its members are homeless and 17% find it difficult to keep food in the pantry by the end of the month.” 

Health Care Technology

The Wall Street Journal’s Laura Landro explores the fast-growing array of digital tools aimed at assisting patients deal with such ailments as diabetes, heart disease, and lung disorders. “Studies show that the emerging field of digital medicine–a combination of remote monitoring, behavior modification and personalized intervention overseen by the patient’s own doctors — can improve outcomes in some of the most costly and tough to manage categories. As a result, a growing number of hospitals and health systems are adopting digital programs that have been studied in clinical trials and can be delivered on a broad scale at low cost with the use of smart phones, wireless devices and sensors.” 

Stanford medicine has issued a trend analysis that predicts tremendous advances in the use of data to benefit patient care. “The sheer volume of healthcare data is growing at an astronomical rate, the report emphasizes: 153 exabytes (one exabyte equals one billion gigabytes) were produced in 2013 and an estimated 2314 exabytes will be produced in 2020, translating to an overall rate of increase at least 48% annually. Tech companies are collectively envisioning a closed loop system in which information from a health system along with information from the patient — all their wearable information, digitalized images, their genome and millions of other test that they’ve had — can be combined with brilliant informatics algorithms to produce highly important clinical advice right at the bedside.” 

The Massachusetts eHealth Institute at the Massachusetts Tech Collaborative has issued a research report surveying trends and attitudes of Massachusetts family caregivers regarding the use of digital health solutions to their day-to-day caregiving issues.  Key findings include: the most common challenge for caregivers is the time and energy required while trying to balance caregiving with their personal lives and other daily tasks; the most appealing technologies for those home based caregivers are those that can serve as a platform to facilitate peer-to-peer support, provide access to medical research records and resources, and manage tests and time; caregivers surveyed showed little fear or lack of understanding of technology, with 96% reporting they go online daily. 



AB 1200 — Aging and Disabilities Resource Connection program

This bill establishes the ADRC program to provide assistance to consumers and families on long-term care services and support programs (LTSS). This initiative focuses on improving the access to LTSS and other existing health care programs for elders and people with disabilities.

AB 275 — Long-Term Care Facilities: Requirements for Changes Resulting in The Inability of The Facility to Care for its Residents

In the event a Long-Term Health Care (LTC) facility were to close and or change their license status that may cause residents to transfer from its facility, this bill will revise the procedures for such circumstances. AB 275 will require that LTC facilities give residents a 60-day notice rather than 30-days to transfer, and propose relocation plans that have been pre-approved by the Department of Public Health.

AB 506 — Insurance: Long-Term Care Insurance

This bill makes technical changes to existing long-term care insurance by ensuring that all long-term care benefits include coverage for institutional care, including care in a nursing home, convalescent facility, extended care facility, custodial care facility, skilled nursing facility, or personal care at home; hospice, or respite care; or community-based coverage, including adult day care.

SB 219 — Long-Term Care Facilities: Rights of Residents

California has sought to protect the rights of lesbian, gay, bisexual, and transgender senior residents. This bill intends to specifically protect LGBT seniors in long-term care facilities by detailing actions that are deemed discriminatory and to make residents fully aware of their rights.


HB 607 — Kapuna Care Act

Signed into law by the governor, the Kapuna Care Act establishes the Kapuna Caregivers Program to help working family caregivers provide care for their elders living at home. The program will cover up to $70/day for core services, including adult day care, attendant care, home-delivered meals, and transportation.


Louisiana’s Governor and Health Secretary have issued a glowing report of the effects of Medicaid expansion in their state.  According to a summary provided by the National Association of Medicaid Directors, “Since coverage began a year ago, more than 433,000 men and women have health care coverage under Medicaid expansion (or "Healthy Louisiana"), dropping Louisiana's uninsured rate from 21.7 percent in 2013 to below 12.5 percent - one of the largest reductions in the uninsured rate for any state. Due to this expansion of coverage, more than 100,000 have received preventive care, including screenings for breast cancer, diabetes, and colon cancer. In addition, the expansion directly led to the creation of 1,000 new jobs while generating $4 billion in new revenues for the state's health care providers.” 


SB 744 — An Act Relating To Human Services: Medical Assistance 

This bill addresses medical assistance for Medicaid beneficiaries by establishing a process to pay for the long-term care provider’s services by applying it to Medicaid assistance through submitting an application for review.

SB 270 — The Rhode Island Aging and Disability Resource Center 
The department of human services shall establish a division of elderly affairs (DEA) and the Rhode Island aging and disability resource center (ADCR) to be a part of the Rhode Island long-term care system for elders and people with disabilities. This bill will also require an annual appropriation of $1,000,000 to establish the ADCR in Rhode Island.

SB 1693 — Study of Seniors With a Visual Impairment by The Aging Texas Well Advisory Committee

This act will require the Texas Aging Advisory Committee to develop a study on seniors with visual impairments in collaboration with private entities and organizations that also focus on individuals with visual impairments. The intent of this bill is to determine the growth of the senior population with visual impairments and find recommendations for services to assist this population.


Aging LGBT Adults Face Bias, Poverty and Isolation

The Movement Advancement Project (MAP) and SAGE (Advocacy & Services for LGBT Elders) recently released a report covering issues related to LGBT senior adults. Findings in the report show that discrimination has affected LGBT seniors’ economic security, social connections, and overall health.

Medicaid’s Role for Seniors
The Kaiser Family Foundation collected data across the U.S. to understand the significant role Medicaid provides to older Americans. Seniors in the U.S. make up 15% of the population — estimated to be about 47.5 million — and have complex needs for healthcare.

A segment on the June 16 PBS News Hour focused on efforts to reduce the impact of what has become called the Post Intensive Care Syndrome or PICS (for an earlier discussion of the syndrome see FCA’s May Policy Digest media watch). The News Hour went to Nashville’s Vanderbilt University Hospital to highlight the nature of the problem and approaches to minimizing its effects.

Kaiser Health News analyst Michael McAuliff, looking at the Senate bill crafted under the direction of Majority Leader Mitch McConnell, observed that–given the GOP split on repeal and replace options–McConnell offers a solution: “go ahead and repeal Obamacare, but hide the pain as long as possible.” At least two policy details in the bill, McAuliff observes, may obscure the effects for several years and make the health insurance markets look better almost immediately by giving insurers a more predictable, more lucrative market: first, continued payment for two years of cost-sharing reduction payments to insurance companies on behalf of low income marketplace customers, to cover their out-of-pocket health expenses; and second,  a “Short-Term Stabilization Fund” that would also aim to help lower premium costs and could attract a few more insurers into counties that are sparsely covered now.

One of the most contentious issues in the Congressional health care debate concerns how proposed changes will affect coverage for individuals presenting pre-existing conditions when applying for insurance. Writing on the Atlantic’s blog, Gene Sperling and Michael Schapiro take a very critical view of the Senate bill’s approach. “The Republican plan may not allow insurers to discriminate against a pre-existing condition through the front door, but they created a backdoor way in.” The back door: waivered state “skinny plans” that, in the bloggers’ view “will in practice make those with pre-existing conditions pay more. Many families will simply not be able to afford the care they need.”

Thomas B. Edsall took to the New York Times opinion pages to voice a broadside against the GOP’s answer to Obama care. Edsall begins with a May 22 quote from OMB director Mick Mulvaney: “For years we focused on how we can help Americans receive taxpayer-funded assistance. Under President Trump’s leadership, we’re now looking at how we can respect both those who require assistance and the taxpayers who fund that support. For the first time in a long time, were putting taxpayers first. Taking money from someone without an intention to pay it back is not debt. It is theft.” Edsall proceeds to offer an extensive analysis of Medicaid demographics to show that “contrary to the view that Medicaid is a welfare program, real life Medicaid has become a financial, emotional and practical lifesaver for millions of Americans. Medicaid is not, to use Mulvaney’s term, thievery. Thievery is what folks like Paul Ryan and Mitch McConnell are proposing to inflict on their fellow Americans, a massive reduction in what has become a crucial source of support for those faced with impossibly high costs and impossible personal demands as caregivers.”

President Reagan’s principal speechwriter and longtime Pulitzer Prize winning columnist Peggy Noonan used the occasion of America’s 241st birthday to voice a fervent plea for a bipartisan health care bill to resolve the current legislative impasse. “It would be powerful,” Noonan wrote in the Wall Street Journal, “if a Democratic senator would go on the Sunday shows and say something like this: ‘Republicans have proved they can’t make progress. They’re failing in their efforts, and I’m not sad about it, because the bill is a bad one. But I’m not going to lie to you, Obamacare has big flaws–always did. It was an imperfect piece of legislation and it’s done some things my party said wouldn’t happen, such as less coverage and hiked deductibles. The answer is to do what we should have done in the past, and that is join with Republicans to hammer out changes that will make things better, that we all can live with, at least for now.’ If (the Democrats) show some humility Republicans would look pretty poor in not responding with their own olive branch. Show some class, help the country. When it’s over, use whatever words you want: ‘We forced Democrats to admit the bill was flawed and dying.’‘We forced Republicans to back down.’ America won’t mind the propaganda, they’re used to it. Just make a bad thing better.”

Benjamin Rose Institute on Aging, Family Caregiver Alliance to Develop Online Resource to Compare Evidence-Based Programs for Dementia Caregiving
(Cleveland, OH). Benjamin Rose Institute on Aging and partners at the Family Caregiver Alliance have begun to develop a web-based resource to help health and social service organizations compare, select and implement evidence-based programs for dementia caregiving.
Op-ed by FCA Executive Director on The Hill

Kathleen Kelly, FCA executive director, has an op-ed published today, July 13, on The Hill. Kelly writes in support of the Credit for Caring Act, which if enacted would offer family caregivers a $3,000 federal tax credit to help offset the growing expenses they often incur caring for a family member. In other related news today, The Hill convened policymakers for an event — The Cost of Caring: Family Caregivers and Tax Reform — to discuss the bi-partisan effort in Congress. You can follow the discussion on Twitter at #CostofCaring.
  Apply Now! 2017 Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards
FCA, with support from The Rosalinde and Arthur Gilbert Foundation, is pleased to oversee the 10th annual Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards — now accepting applications until Monday September 11, 2017, 5 p.m. (Pacific Time). The program promotes strengthening caregiving for people with Alzheimer’s disease, and encourages innovation in this field by both recognizing and rewarding the efforts of those who lead the way in addressing the needs of Alzheimer’s disease caregivers. One $20,000 award will be given in each of the following categories: Creative Expression, Diverse/Multicultural Communities, and Policy and Advocacy. View FCA’s online scrapbook of past Caregiving Legacy Award winners 2008–2016.
Professional Studies
Graduate Studies

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

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FCA's Connections e-newsletter focuses on issues and information important to family caregivers. The newsletter regularly covers tips, articles, and helpful advice that can assist families with the numerous daily care tasks that caregiving for loved ones presents — including the often overlooked “caring for yourself.” While much of the content can prove helpful to caregivers nationwide, the events included are local to the six-county region of FCA’s Bay Area Caregiver Resource Center.

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