The comment below, by Carol Levine, director of the Families and Health Care Project, was submitted as part of the public comment period related to the new rule proposed by the Centers for Medicare and Medicaid Services, "Medicaid and Children's Health Insurance Program (CHIP) Programs: Medicaid Managed Care, CHIP Delivered in Managed Care, Medicaid and CHIP Comprehensive Quality Strategies, and Revisions related to Third Party Liability."
The United Hospital Fund, a nonprofit independent health services research organization in New York City, has identified the needs of family caregivers who provide 80-90% of long-term care in the community as a pressing health care and social service priority. Over the past 18 years, the Fund's Families and Health Care Project, which I direct, has conducted research and quality improvement collaboratives, as well as other activities designed to raise awareness of the critical but often invisible role family caregivers play in the care of people who are elderly, chronically ill, and disabled.
In that context, I appreciate the opportunity to comment on the CMS proposed rule making changes to 42 CRF Parts 431, 438, 457, and 495. This is an important step in modernizing Medicaid managed care regulations to align them with other changes in the health care delivery system. There is one striking omission, however. The proposed rule does not recognize the importance of family caregivers in serving Medicaid beneficiaries, especially those with complex medical conditions and/or cognitive impairments.
As a number of the comments to these rule changes have already indicated, even when there are formal services in place, family caregivers provide essential medical and nonmedical services to Medicaid beneficiaries, allowing them to remain in the community. Family caregivers are often de facto care coordinators, making sure that services are delivered as planned and communicating with a wide range of providers and vendors. Certainly those recipients who prefer not to have family involved have the right to arrange their care without family, but this should not be considered the default position for all beneficiaries.
A cornerstone of the regulations is Element 6: Person Centered Process, intended to ensure that beneficiaries' medical and non-medical needs are met and that they have the quality of life and level of independence they desire. Person-centered processes in an MMLTC program include a comprehensive needs assessment and service plan. In a holistic view, person-centered care does not see the person as an isolated individual but as someone who is connected to and reliant upon others, mainly family and friends. Service plans are often constructed with an expectation of family care.
When family care is built into the care plan, family caregivers' needs must be met for them to be able to continue to provide the care. An array of studies over several decades has demonstrated that at least 80% of all long-term care in the community is provided by family and friends; that will not change under Medicaid managed long-term care. The opportunity exists, however, to explicitly build that care into the process of assessment and planning in a way that both meets the beneficiary's needs and supports the family.
The regulations should state that a patient's comprehensive needs assessment should also explicitly include an assessment of the family caregiver's capacities and needs for training and support. States and health plans should be required to describe their plans for caregiver assessment, document the results of the assessment, and review follow-up measures at designated intervals, or when the beneficiary's needs change. A compendium of caregiver assessment measures is available at caregiver.org.
Moving beyond the individual beneficiary to the design, organization, and implementation of the plan, there are some actions that could enhance the states' and health plans' ability to better serve beneficiaries and their family caregivers. For example, section 438.70(a) requires that states have a process to engage stakeholders. Among the other stakeholders to be included, family caregivers should have a high priority. Similarly, section 438.110(a) requires the establishment and maintenance of member advisory committees. Limiting the advisory committee to members deprives representation to those beneficiaries who cannot, for reasons of health or cognitive status, participate fully. Family caregivers should be included in these committees to speak for them.
Finally, as part of the requirement in section 438.330(a) that the State require an ongoing comprehensive quality assessment and performance improvement program, the rule should state that this assessment include the identification, needs assessment, and training of family caregivers. Other measures include caregiver satisfaction with the program, confidence in performing tasks, and level of stress associated with caregiving.