h. Criteria for the Family Caregiver Exclusion

We interpret the inclusion of family caregivers as a component of the exclusions at section 1902(xx)(9)(A)(ii)(III) of the Act as recognizing not only the critical role family caregivers play, but also that these caregiving responsibilities, when regularly occurring and not solely incidental in nature, meaningfully limit a family caregiver's ability to participate in work or other community engagement activities. This interpretation is supported by the cross-reference to the RAISE Family Caregivers Act's definition of family caregiver, which emphasizes the significant relationship between the caregiver and the care recipient and recognizes that caregiving involves the provision of a broad range of assistance.

In implementing this provision, we considered whether to adopt a specific, uniform definition of “significant relationship” but opted not to do so as we recognize that caregiving relationships and the assistance provided varies widely. However, to give practical effect to the significant relationship element of the RAISE Family Caregivers Act definition of family caregiver while avoiding an overbroad application of the exclusion, we are establishing criteria to ensure the caregiving relationship is significant enough to justify exclusion from the community engagement requirement. States must apply these criteria to identify caregiving relationships that are sufficiently significant to qualify the family caregiver as a specified excluded individual through section 1902(xx)(9)(A)(ii)(III) of the Act. These criteria do not redefine who a family caregiver is but instead should be applied when States determine if an individual who meets the family caregiver definition at § 435.554(a) qualifies as a specified excluded individual. These criteria apply to all family caregivers regardless of whether the individual is a paid or an unpaid family caregiver, as the purpose of the exclusion is to recognize the time and responsibility associated with being a family caregiver, regardless of compensation.

To simplify State administration and reduce beneficiary confusion, the criteria that pertain to a “relative,” as described below, are structured to align with the relationships recognized under the caretaker relative definition as discussed earlier in this section and defined at § 435.554(a). Given that section 1902(xx)(9)(A)(ii)(III) of the Act lists family caregivers and caretaker relatives as separate and distinct groups subject to the exclusion, we are not requiring that a family caregiver reside with or assume primary responsibility for the care of the dependent child or disabled individual. This reflects the varied and individualized nature of family caregiving arrangements and ensures the family caregiver exclusion operates separately and apart from the caretaker relative exclusion while allowing States to build on existing administrative infrastructure and relationship determinations.

As implemented at a new § 435.554(c)(3)(i), an individual who is a family caregiver as defined at § 435.554(a) is a specified excluded individual if he or she meets one of the following criteria:

1. The individual primarily resides with a dependent child or disabled individual, as these terms are defined earlier, for whom he or she provides assistance that occurs on a regular basis and is not solely incidental in nature;

2. The individual is a relative (as specified in the “caretaker relative” definition at § 435.554(a) without regard to the requirements to live with and to assume primary responsibility) of a dependent child or disabled individual, as these terms are defined earlier, for whom he or she provides assistance that occurs on a regular basis and is not solely incidental in nature, and with whom he or she does not reside; or

3. The individual does not reside with and is not a relative (as specified in the “caretaker relative” definition at § 435.554(a) without regard to the requirements to live with and to assume primary responsibility) of a dependent child or disabled individual, as these terms are defined earlier, for whom he or she provides not less than 80 hours of assistance that is not solely incidental in nature per month.

We view shared residence with the care recipient and familial relationship to the care recipient as consistent with ongoing caregiving responsibility and as strong evidence of the “significant relationship” specified in the RAISE Family Caregivers Act definition of family caregiver. According to Pew Research Center, 10 percent of all U.S. adults say they are a caregiver for a parent age 65 or older. [ 56 ] The full extent of the care provided by family caregivers to individuals with whom they live or to whom they are related is difficult to fully quantify, as often this care and support is unrecognized and unpaid. Family caregivers who live with the recipient of that care are more likely to be involved in daily, more intensive, round-the-clock care, assistance, or supervision. Relatives of care recipients are also often called upon to provide extensive support at all hours, particularly if they live close to the care recipient. Caring for relatives occurs both within and across households, and with more older adults choosing to remain in their own homes and communities, the prevalence of long-distance caregivers has increased to approximately 15 percent (5 to 7 million) of all family caregivers. [ 57 ]

For these reasons, we believe that co-residence and familial relationship are sufficient indicators to establish an ongoing significant caregiving relationship, particularly given the often personal and intense nature of the care provided by family caregivers who live with or are related to the care recipient, the regularly occurring provision of that care, and the impact of that care to the care recipient. As such, family caregivers who live with or are related to a dependent child or a disabled individual for whom they provide assistance that occurs on a regular basis and is not solely incidental in nature are not required to demonstrate provision of a minimum number of caregiving hours under this regulation. As described in section II.I.7.c. of this IFC, States are required to obtain sufficient information, including documentation when applicable, to verify an individual's status as a specified excluded individual through the family caregiver component of section 1902(xx)(9)(A)(ii)(III) of the Act.

We also recognize that some individuals provide caregiving supports to non-relatives with whom they do not reside. While the majority of family caregivers provide care for a relative, 11 percent care for a friend, neighbor, or other nonrelative. [ 58 ] The intensity of care provided in these situations varies widely from limited, episodic, or incidental assistance to substantial, ongoing hands-on support. While we recognize that even limited assistance may help an individual with a disability remain in their own home, as noted at the beginning of this section, we interpret the inclusion of family caregivers as a component of the exclusions at section 1902(xx)(9)(A)(ii)(III) of the Act as recognizing individuals whose caregiving responsibilities meaningfully limit their ability to participate in work or other community engagement activities. As such, we believe it is necessary to establish a clear and practical standard for family caregivers who do not live with, and are not related to, the recipient of the care he or she provides.

The 80-hour per month threshold reflects a sustained and regular commitment of time providing care, roughly equivalent to an average of 20 hours per week. This level of caregiving demonstrates a significant relationship with the care recipient and indicates an active caregiving role comparable to part-time employment, job training, or other community activities that would otherwise satisfy the community engagement requirement. The threshold also serves a program integrity function by reducing the likelihood that an individual will qualify as a specified excluded individual under the family caregiver component at section 1902(xx)(9)(A)(ii)(III) of the Act based on informal or sporadic assistance, helping ensure the exclusion is reserved for individuals with caregiving responsibilities that are significant enough to justify exclusion from the community engagement requirement.

We also considered State administration of these requirements, and the 80-hour threshold also provides a clear, objective benchmark that States can administer consistently. Without a defined minimum threshold of caregiving, States would be required to make subjective judgements about the sufficiency of caregiving activities, increasing the risk of inconsistent decisions and uneven application across States. This standard reduces subjectivity, supports more uniform implementation across States, and promotes more predictable outcomes for States and beneficiaries.

We recognize that a person who meets the family caregiver definition in § 435.554(a) might provide significant and meaningful caregiving to a dependent child or a disabled individual to whom he or she is neither related nor resides with, but that he or she might not qualify as a specified excluded individual because the hours of assistance provided do not reach the 80-hour per month threshold. Such a person would be an applicable individual unless eligible for other exclusions. However, as noted earlier in section II.C.1. of this IFC, the hours of assistance provided by such an individual would count as unpaid work under § 435.552(b) and the individual would only need to engage in additional activities sufficient to reach the 80-hour threshold to comply with the community engagement requirement. For example, if an individual provides 55 hours per month of assistance to a non-relative who he or she does not live with, those 55 hours would count towards compliance with the community engagement requirement, and the family caregiver would need 25 additional hours a month of the activities listed in section 1902(xx)(2) of the Act, such as community service or participation in an educational program, to demonstrate compliance.

To summarize, we are implementing at new § 435.554(c)(3)(i) the family caregiver component of the exclusion at section 1902(xx)(9)(A)(ii)(III) of the Act by considering the following to be specified excluded individuals: individuals who meet the definition of a family caregiver at § 435.554(a) who reside with or are a relative (as specified in the caretaker relative definition at § 435.554(a) without regard to the requirements to live with or to assume primary responsibility) of a dependent child or a disabled individual for whom he or she provides assistance that occurs on a regular basis and is not solely incidental in nature, or who provide not less than 80 hours of assistance that is not solely incidental in nature per month to a dependent child or a disabled individual to whom they are not related and with whom they do not reside. We believe this approach allows us to give practical effect to the “significant relationship” element of the RAISE Family Caregivers Act without constraining States to a single definition and that the criteria are reliable indicators that a caregiving relationship is ongoing, meaningful, and not merely incidental or episodic. Co-residency and familial relationship generally reflect an inherent level of connection and responsibility, while the minimum hours threshold for family caregivers who do not live with and are not related to a dependent child or disabled individual ensures that the family caregiver exclusion applies where there is a demonstrable and sustained caregiving role. The criteria also provide clear standards while recognizing and preserving the varied and individualized nature of caregiving arrangements.

Finally, as States implement the family caregiver component of the exclusion at section 1902(xx)(9)(A)(ii)(III) of the Act, they must ensure that they are conducting outreach consistent with the Medicaid outreach requirements at § 435.561. We also encourage States to consider general public outreach efforts to complement the required outreach so the public can clearly understand which individuals may qualify as a specified excluded individual under the family caregiver component. Individuals who are family caregivers may not realize that they qualify for an exclusion to the community engagement requirement and will need clear, consumer friendly information to help them understand whether they are excluded. For more information on Medicaid outreach requirements, see § 435.561 and the related discussion in section II.L. of this IFC. ( printed page 33372)