Vol. 17, No. 3
April 5, 2017
ACA Repeal

ACA Repeal: What’s Next for Medicaid?

In the wake of the collapse of the ACA repeal effort, attention has shifted to potential administrative and regulatory moves to restructure Medicaid. Signaling this approach, HHS Secretary Tom Price and CMS Administrator Seema Verma have written to the nation’s governors soliciting Medicaid waiver applications that might implement such changes as mandated work requirements and cost sharing. The officials also announced an indeterminate delay in state compliance with the 2014 final rule concerning Medicaid Home and Community Based (HCBS) services. HHS has created a distinct website focused on providing ongoing information about the administration’s initiatives and actions regarding health policy and programs.

Beyond the ACA Repeal Collapse: Good Sources of Information

As reported last issue, the following organizations have developed information and analyses on the impact of proposed changes to the Affordable Care Act (ACA) and their impact for patients and family caregivers. Policy Digest will continue to provide a list of tracking organizations; you may want to sign up to receive updated information of interest to consumers. We hope that anyone who works with patients or family caregivers will also be educating consumers about any proposed changes.

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.

Lawsuit Challenging Allocation of Funding to Help with Out-of-Pocket Medical Expenses

May 22 is the scheduled date for a status conference on a lawsuit, initiated by the House of Representatives during the Obama administration, that seeks to require a specific appropriation for funds to ease cost-sharing for many ACA enrollees, thereby making their availability highly unlikely. Whether the Trump administration will continue to argue, as did President Obama that the president can administratively authorize such funds remains unclear. The uncertainty is expected to be a significant factor in health insurers’ soon-to-be-made decisions about remaining in ACA exchanges.

What’s Next for the ACA and the People It Covers?

Authoring a Commonwealth Fund brief, Fund President David Blumenthal and Vice-President Sara Collins offer a comprehensive review of possible federal ACA-related executive and legislative branch actions that might ensue following AHCA’s defeat.

Trumpcare 2.0

Margot Sanger-Katz in an article in the The Upshot (The New York Times) describes the latest health care proposal from the White House and Freedom Caucus conservatives. The proposal undermines the Affordable Care Act by allowing states the option to remove two major insurance regulations: essential health benefits and community rating.


Medicare Must Now Notify Patients of Hospital Care Status

As a result of tightened audits of Medicare covered hospital stays, implemented several years ago, increasing numbers of patients have experienced retroactive denials of full in-hospital and post-acute care coverage based on being deemed to have been on “observation” status rather than “admitted” to the hospital. Pursuant to a recent law HHS has now added to the hospitals’ conditions of participation a requirement that patients be given clear notice, while in the hospital, as to the status of their stay. The notice does not, however, remove the three day stay prerequisite for covered post-acute skilled care.

National Academy of Medicine Report: ‘Vital Directions for Health and Health Care’

Emanating from the National Academy of Medicine (formerly the IOM) is a report marking the culmination of a major initiative, involving expert panels and 19 commissioned papers, that spells out the Academy’s vision of future “Vital Directions for Health and Healthcare.” Among the many recommendations is a call for ensuring that “patients and their families are fully informed and able to participate as partners in determining outcomes and values for their own health and healthcare.”

H.R. 1313: Employee Health Privacy at Risk

Gathering increasing attention is House bill (H.R. 1313) that, in the guise of encouraging workplace wellness programs, could threaten the privacy of employees’ genetic and other health information. Under the bill, writes Sharon Begley in StatNews, “none of the protections for health and genetic information provided by the 2008 genetic privacy and nondiscrimination laws known as GINA, as well as the 1990 Americans with Disabilities Act, would apply to workplace wellness programs as long as they complied with the ACA’s very limited requirements for the programs. As a result, employers could demand that employees undergo genetic testing and health screenings.”

Strengthening the Community Living Workforce

National Academy of Medicine has published proceedings of a June 2016 workshop convened “to examine ways of strengthening the workforce to support community living and participation for older adults and individuals with disabilities.” The material includes a presentation by Carol Levine, director of the United Hospital Fund’s Families and Healthcare Project: “Family caregivers, we like to say, do not coordinate care so much as they coordinate life.” 

Report on Electronic Health Records in Post-Acute Care

The General Accountability Office (GAO) has released a report concerning the use of electronic health records (EHRs) in post-acute care. GAO found that inadequate EHR interoperability is hindering efforts to “help coordinate care, avoid duplication of testing procedures, and prevent medication and other errors.

From Hospital to Home: Two Recent Developments to Assist Family Caregivers

First, seeking to maximize the provisions of the CARE Act that many states have recently enacted, the United Hospital Fund (UHF) has published an extensive guide to the Act’s provisions and a Toolkit for taking advantage of them. While focusing on New York State, the material should be widely applicable throughout the country.

In a related development, the Home Alone Alliance, formed by four organizations (AARP, Family Caregiver Alliance, UHF, and the Betty Irene Moore School of Nursing at UC Davis)—and building upon the AARP-UHF landmark 2012 “Home Alone” report—has released a series of ten brief videos in English and Spanish. The videos deal with caregiver assistance issues such as fall prevention, walking, and shower safety; many more videos covering wound care and other major home care challenges are scheduled for future release.

Revised Federal Nursing Home Regulations

From the National Consumer Voice for Quality Long-Term Care comes an extensive collection of analytical material concerning various aspects of the October 2016 final federal regulations on nursing home care.


HB 2029: Caregiver Leave

  • HB 2029 amends the Uniform Attendance and Leave Policy Act. It would provide state employees the flexibility to take an absence for the means of providing support or assistance to an individual due to injury, illness, or medical appointment.

SB 177: Cognitively Impaired Adults: Caregiver Resource Centers

  • SB 177 requires $ 3.3 million to be appropriated by the General Fund to the Department of Health Care Services (DHCS). These funds would be allocated specifically for Caregiver Resource Centers (CRCs) to provide respite care. 

AB 806: Personal Income Taxes: Credit: Family Caregiver

  • AB 806 seeks to allow family caregivers credit against taxes for each taxable year starting January 1, 2018. This bill’s intent is to create a tax credit for family caregivers who support qualifying family members. 

HB 615: Healthy Aging Partnership Program

  • The Hawaii Healthy Aging Partnership Program, established in 2003, has improved the lives of those who participate in the programs it offers. In the fiscal year 2016-2017, the Healthy Aging Partnership Program did not receive funding. HB 615 seeks to appropriate funds for this program to continue its critical role in improving lives. 

SB 533: Aging and Disability Resource Center

  • The Legislature recognizes how important the state’s aging and disability resource center is for individuals to access long-term support and care services. Based on the consideration of its critical role, SB 533 would appropriate funds for the aging and disability resource center. 

SF 924: Senior Care Career Opportunities

  • SF 924 is an act to appropriate money for the Board of Trustees of the Minnesota State Colleges and Universities in order to develop educational materials for students in K-12 education to increase the awareness of senior care career opportunities.

SB 223: Relating to In-Home Caregivers

  • SB 233 requires individuals who are contracted or employed by in-home caregivers or in-home care agencies to meet training requirements established by the Home Care Commission. This would become effective on or after the date of this act in 2017.

HB 1038: Caregiver Resource Center

  • HB 1038 is an act to establish a caregiver resource center in the Department of Human Services. A sum of $200,000 is to be provided to the Department of Human Services for the purpose of administrating a lifespan respite care program, and informational resources for caregivers.

SB 223: Relating to In-Home Caregivers

  • SB 233 requires individuals who are contracted or employed by in-home caregivers or in-home care agencies to meet training requirements established by the Home Care Commission. This would become effective on or after the date of this act in 2017.

HJR 680: Family Caregiving and Long-term Care Services Subcommittee

  • House Joint Resolution 680 establishes a joint subcommittee to examine issues based on family caregiving and long-term care support services. The increase of aging populations and assistance with caregiving led to this resolution for the Virginia Legislature to create a joint subcommittee.

The Impact of the Affordable Care Act on Health Coverage for Direct Care Workers

PHI presents a policy analyses on the access to affordable health coverage that remarkably improved the workforce for caregivers, after the ACA was passed. This report discusses the issues caregivers face in this work force and how the ACA has helped improve it. Also, this report shows how the demand for care workers is growing while our population ages. This topic significantly reflects the areas of policies that need focus on for the profession of care workers and individuals with disabilities.

Caring for Yourself and Your Family Member

In particular, this study discusses how caregivers should care for oneself while serving to support others. Findings show the positive impact it has on an individual’s psychological health in balancing the care for oneself and others. At the end the report, there is a link to take a self-assessment on how to effectively be a caregiver in order to maintain a healthy life and profession.

Medicaid: A Last Resort for People Needing Long-Term Services and Supports

Medicaid has served recipients on a variety of services, including long-term services and support (LTSS) from the age 65 to the end of their lives. This AARP report examines the needs and usage of LTSS offered from Medicaid to older adults in America. Studies have found that more than 18% of adults will use LTSS once they have reached the age 65 or older. Medicaid has helped Americans who receive LTSS with financial needs, medical services, and caregiver support.


Laura Landro writes in the Wall Street Journal that patients’ ability to engage in “shared decision-making” is being steadily enhanced by advances in decision-making assistance. Researchers and providers, Landro reports are “designing decision aids, for instance, that walk patients through different options, translating complicated medical jargon and statistics about risks into simple language and visual aids. They’re offering patients full access to their own medical records, including their doctor’s notes about them. And they’re training doctors to help guide patients to make informed choices.”

Three New York Times reporters observe that the ACA repeal debate revealed how important Medicaid—in 1965 a virtually ignored Medicare companion program—has become in the lives of more than 70 million Americans. The Times story contains a number of patient and family-specific examples of the crucial role the program plays in their lives.

Kaiser health news editor-in-chief Dr. Elizabeth Rosenthal, in an excerpt from her new book, “An American sickness: How Healthcare Became Big Business and How You Can Take It Back,” paints an excruciating account of how the coding system for determining healthcare charges is contributing to the tribulations of many uninsured and underinsured Americans.

In back to back weekly columns Washington Post personal finance columnist Michele Singleterry first spoke very movingly about her family’s life-saving reliance on Medicaid while she was growing up and then reported some of the reactions she received, both hateful and supportive.


FCA Executive Director Kathleen Kelly’s Guest Essay on Next Avenue

In the week prior to the withdrawal of the Congressional vote on the proposed American Health Care Act (AHCA), Kathy Kelly, FCA’s executive director and a Next Avenue 2016 Influencer in Aging, had an essay published on Next Avenue. Her piece, Why Medicaid Cuts Would Be Bad for Family Caregivers, clearly explains how Medicaid provides critical community long-term services and supports to disabled and older adults. Directed at family caregivers, it was shared widely on social media. FCA will continue to advocate, from the caregivers’ perspective, by opposing efforts to repeal the Affordable Care Act (ACA) with important information and calls to action.

Evidence-Based Dementia Practices Database Resource to Be Developed

FCA is pleased to announce a partnership with the Benjamin Rose Institute on Aging  to develop an online resource database of evidence based interventions for family caregivers of adults with dementia. The resource will provide professionals with access to approximately 50 proven dementia caregiving programs, but with a focus on information related to implementation of these programs within community organizations and systems. The John A Hartford Foundation announced their grant award to this project in late March. Announcements from additional foundation partners are expected in the near future.

AiA17: A Forum, a Workshop, and the Gilbert Caregiving Legacy Awards Reception

Executive Director Kathy Kelly and Director of Operations Leah Eskenazi spent March 20–23 at the annual Aging in America (AiA) conference, this year in Chicago. Kathy, with contributors to the winter 2015–16 issue of ASA Generations on Family Caregiving, presented a forum to discuss trends, programs, and policies. Kathy also presented a workshop with LACRC Director Donna Benton on Online Services for Family Caregivers, focusing on FCA CareJourney. Both Leah and Kathy, with The Rosalinde and Arthur Gilbert Foundation, hosted a successful reception for the winners of the 2016 Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards.

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).

Send your feedback and/or questions to policy_digest@caregiver.org .

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