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Family Caregivers Rising: A Bipartisan Constituency

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By Anne Montgomery

In the midst of Congress’ highly divisive and bitterly partisan debate over the future of Medicaid and a possible rollback of the Affordable Care Act, there are oases of thoughtful, bipartisan legislative progress. These proposals focus on a quietly powerful constituency: family caregivers. Another area of rational reform is Medicare policy, where policymakers are working to build in needed flexibilities to improve services for beneficiaries with chronic conditions — and by extension their family caregivers and other sources of support, including community-based organizations.

In May, the Senate Health, Education, Labor and Pensions Committee unanimously approved no-cost legislation that proposes to harness the ingenuity of federal agencies and thought leaders in the private sector, to develop both an overarching strategy and specific new approaches for helping family caregivers. Known as the RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act, the bill (S. 1028) has the support of Sens. Susan Collins (R-ME), Tammy Baldwin (D-WI), Michael Bennet (D-CO), Lamar Alexander (R-TN) and many others. Reps. Gregg Harper (R-MS-3), Kathy Castor (D-FL-14), Lujan Grisham (D-NM-1), and Diane Black (R-TN-6) sponsored a prior version of the bill in the House. The Senate bill has many backers in the stakeholder community, including the Center for Elder Care & Advanced Illness, who are hoping that Members of the House of Representatives will shortly re-introduce their version and agree to bring it to a vote under streamlined voting procedures. While this may seem ambitious, the House may be influenced by the Senate’s strong support.

In another promising legislative development that focuses on family caregivers, Rep. Michele Lujan-Grisham (D-NM) is preparing to re-introduce the National Care Corps Act. In comparison to the RAISE Family Caregivers Act, this proposal takes a targeted approach: It envisions a national program of training and recruitment to prepare volunteers of all ages to share skills, provide companionship, and lend assistance for non-medical tasks to elders and individuals with disabilities. A related bill is planned that would pilot several local care corps in different states across the country, and Lujan-Grisham staff are optimistic that the measure will attract bipartisan support. Over in the Senate, Sen. Bob Casey (D-PA) may reintroduce a measure he championed during the 113th Congress — the Caregiver Corps Act — which takes a similarly low-cost approach to organizing volunteers in communities, using toolkits and practical technical assistance materials. These toolkits would guide the formation and operation of local caregivers corps in key areas, including screening, training, recruitment, program administration and management, recognition of volunteers, and performance evaluation. This bill envisions that a wide range of organizations — ranging from neighborhood groups to large businesses to local government –could sponsor a caregiver corps in one or more communities.

There is also growing bipartisan interest in policy that would create a new federal tax credit for working family caregivers to help them offset the additional out-of-pocket costs associated with support of an ill or disabled loved one. The “Credit for Caring” Act (H.R.2505 and S. 1151), is sponsored by Sens. Joni Ernst (R-IA), Michael Bennet (D-CO.), Shelley Moore Capito (R-WV) and Elizabeth Warren (D-MA), and Reps. Tom Reed (R-NY) and Linda Sánchez (D-CA. Meanwhile, in the Trump Administration, greater financial support for working families is slowly becoming a priority: Ivanka Trump has suggested a proposal for six weeks of mandatory paid leave for new parents – but this would not address the needs of our fast-aging society In the Medicare arena, the Senate Finance Committee unanimously approved the CHRONIC (Creating High-Quality Results and Outcomes Necessary to Improve Chronic) Care Act on May 18th. While adding no new funding to the program, S. 870 modifies current-law restrictions on Medicare Advantage plans to allow targeted non-medical supplemental services – such as community-based long-term services and supports — to be offered to enrollees who would benefit from such services. The bill also proposes to extend the “Independence At Home” demonstration program by two years, and widens the availability of telehealth services. All of these provisions would indirectly benefit family caregivers.

Family caregivers are also rising at the state level. In Hawaii, the Kapuna Caregivers Program would subsidize assistance for disabled community-residing adults 60 and over at a rate of up to $70 a day for services that enable a family caregiver to both continue providing care and also to remain in the workforce. Payments could be used for adult day care, transportation, chore assistance, home-delivered meals, and personal care. The bill was passed by both chambers of the Hawaii legislature in May, and now awaits the governor’s signature. Washington State is also rolling out a two-part bold program that through an 1115 Medicaid waiver that targets assistance to family caregivers. The Medicaid Alternative Care program supports family caregivers who are not yet receiving Medicaid LTSS benefits, and the Tailored Supports for Older Adults program provides support to family caregivers of people who are not yet eligible for Medicaid. Both programs provide services such as training, support groups, respite services, housework, errands, and home-delivered meals. The latter program specifically aims to provide supportive services to family caregivers while preventing or slowing spend-down.

Overall measures of state progress in offering long-term services and supports were announced on June 14. The Long-Term Care Scorecard — released every three years by AARP, the AARP Foundation, the Commonwealth Fund and the SCAN Foundation – reviews state LTSS programs according to 25 metrics in five categories of affordability and access; choice of setting and provider; quality of life and quality of care; support for family caregivers; and the effectiveness of transitions between nursing homes, hospitals, and homes. The scorecard found “meaningful” improvement — defined as more than 10% of states making gains – across several of these dimensions, but not in affordability and accessibility. The authors note that overall progress is slow. For example, although 24 states have expanded their direct care workforce, the report concludes that it would take 34 years for the five lowest-ranking states (that have an average of 11 aides per 100 persons with disabilities) to reach the ratio of the median state (19 aides per 100 adults with disabilities).

Ensuring faster and more substantive improvements in affordability, and accessibility of long-term care services will require sustained advocacy by coalitions of family caregivers, direct care workers, health care and disability advocates, and a cross-section of health care industry stakeholders. As noted by Katie Roeper of Virginia’s Department for Aging and Rehabilitative Services at the June 14th forum, activism is key: “[We must] find a way to really corral all the voices,” she said. “We’re all growing older, we’re all going to be caregivers, we’re all going to need care…the policies and funding that we struggle with every day could be solved if there was a way to pull all the voices together.”

The public does increasingly see a need for action. Election eve and Election Day polling of Democratic and GOP voters revealed no partisan divide on caregiving: voters simply see it as a major problem that needs “all of the above” solutions. Caregivers are ready for practical policy solutions that provide needed support — and they are increasingly listening to and supporting candidates who champion and implement the changes we need in our care system to support longevity. Fortunately, aging issues and long-term care unite people across the political spectrum.

Responses to poll from Lake Research Partners on policies to help people who are ill, elderly, or disabled.
Polling Data Lake Research Partners on policies to help people who are ill, elderly, or disabled.

Within existing programs, long-term care services must be metaphorically moved from outside the ballpark to the pitcher’s mound. A highly productive way to accelerate this process this is to focus energy on rapidly expanding comprehensive models of care – starting with the Program of All-inclusive Care for the Elderly. A capitated program, PACE has traditionally enrolled dually eligible beneficiaries. It is a mixed model, combining socialization in a day center setting with skilled geriatric services, ongoing monitoring by an interdisciplinary team that includes referrals to services in other settings as needed, assistance with social determinants of health, and dedicated transportation for enrollees traveling to and from home.

With 20 years of experience and 40,000 enrollees across the country, PACE is now ready for its next phase of development: scaling that enables the program to serve significantly larger numbers of Medicare beneficiaries who have chronic conditions and a need for long-term care services, and who are motivated to slow or avoid spending down to poverty in order to qualify for Medicaid. (In fact, there is no certainty that Medicaid long-term care services will be widely available across the country if program funding is sharply restricted, and if states are permitted to prioritize serving lower-cost populations over those needing intensive care.) There are multiple ways that the Trump Administration can make rapid PACE expansion and scaling a reality, and CECAI is working in collaboration with the National PACE Association, researchers, providers, advocates, interested Members of Congress and others to try to make this happen.

Looking squarely at the challenges before us, there is no doubt that we can adapt our care system to broadly include essential long-term care services. Whether and how quickly this happens depends on how vigorously it is pushed. Luckily, there is growing evidence of interest, engagement and successful advocacy at the state and federal levels. But it is an open question as to whether the policy prospects discussed here will be overshadowed by policy that diminishes and undercuts the ability of Medicaid and social services programs to provide long-term care services to elders and family caregivers who are trying hard to conserve their own resources and avoid costly and unnecessary care. What is certain is that these debates have now been joined, and will not disappear from ongoing debates in Washington, D.C., in state capitals, and local forums anytime soon.

So, it’s time to rock this space.

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