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Supporting Informal Caregiving 131Federal Medicaid Policy andInformal CaregivingFederal policies present no substantial barriers tostates in using Medicaid dollars to support peoplewith substantial functional limitations who livewith their families (and thus, by definition, haveaccess to informal care). There are no Federalrestrictions on the provision of HCB waiver servicesbased on living arrangement, for example,other than that the person cannot reside in aninstitutional setting. The same is true with respectto personal assistance and other services furnishedunder the state Medicaid plan. Thus, homeand community services can be furnished to individualswho live with their families or in theirown home just as readily as to individuals whoare served in formal living arrangements such asgroup homes or assisted living.Whether provided under an HCBS waiver programor under the state plan, however, to beMedicaid-reimbursable the services must addressthe beneficiary's needs. This means that servicescannot be furnished if they principally benefit the"family unit." States can (and most do) offerrespite services under Medicaid HCBS waivers.And state programs do provide relief to caregiversfrom the challenges of continuous caregiving.This is appropriate. While these servicesclearly benefit the family caregivers, they are provideddirectly to the beneficiary, and there is noquestion that they are of principal benefit to thebeneficiary.States have enormous latitude in configuring theireligibility policies to expand access to home andcommunity services for persons who live withtheir families (parents, spouses, or adult children).Federal Medicaid policy provides particularlyimportant options to states for making such servicesavailable to children with severe disabilities wholive in the family home. Certain features ofMedicaid eligibility policies for services under thestate plan can pose service barriers for such childrenunless they live in very low-income households.However, under an HCBS waiver program,a state may expand the financial eligibility of thesechildren for Medicaid services by deciding not toinclude the income of their parents in the financialeligibility calculation. States may also extendMedicaid eligibility to children with severe disabilities,irrespective of whether the child will beserved through an HCBS waiver program or thestate plan, under the Katie Beckett option. (SeeChapter 2 for a detailed discussion of financial eligibilityoptions for home and community services.)Two questions often arise concerning provision ofMedicaid home and community services to individualswho have informal caregiving arrangementsin place. One is the extent to which informalcare is taken into account in conjunction withauthorizing the provision of paid services. Theother concerns making payments to family membersto furnish services.Availability of Informal CareThere is no Federal requirement that family membersprovide some minimum amount of care as acondition of service eligibility. Nor is there anystipulation that services may not be furnished ifan informal caregiver is present. However, statescan and do take into account the amount of informalcare available to an individual. If a personneeds 40 hours of support per week and informalcaregivers are available, able, and willing to provide20 hours, for example, then only 20 hours ofpaid supports will be authorized.In practical terms, assessment of the need for paidsupports may focus on specific tasks that an informalcaregiver who lives with and is regularlyavailable to assist the beneficiary is unable to perform.For example, an elderly spouse may be toofrail to assist his wife with transferring into andout of bed, getting into and out of a wheelchair, orgiving other forms of assistance that involve liftingand physical support.Consideration may also be given to the kinds ofhousehold tasks family members typically expectto share or to do for one another when they live inthe same household—as opposed to intimate personalcare tasks that individuals normally do forthemselves. Thus, many state programs expectthat spouses, parents, or other adults who do nothave disabilities and who live with the Medicaidservice beneficiary will take responsibility forgeneral household maintenance tasks. If she lives
132 UNDERSTANDING MEDICAID HOME AND COMMUNITY SERVICES: A PRIMERin her daughter's home, for example, an elderlymother who requires assistance with bathing,dressing, and toileting and who is also unable toperform housekeeping tasks would, in manystates, be eligible only for assistance with personalcare tasks and not for homemaker/chore assistance.If the mother lived alone in her own home,in contrast, she would be eligible to receive homemaker/choreservices in addition to assistancewith personal care.Adult children caring for parents may have conflictingresponsibilities—such as employmentand child care. In such cases, support planningmay focus on those times of day and week whenadult children are unable to provide informalcare (e.g., while they are at work). Similarly, achild with severe disabilities might need afterschoolcare until a parent comes home from work.Formal services provided in tandem with informalcare may be viewed as supplemental, as supportive,or as regular respite care, if a beneficiaryis receiving extensive informal care. (Formalrespite care is provided in addition to the regularservices furnished.)Federal policy allows and encourages the "bestpractice" of matching home and community servicesto the unique needs of individuals and the circumstancesof their informal caregivers. Thus,states can assess availability of informal caregivingand need for paid care by examining each situationon a person-by-person, household-byhouseholdbasis. And when authorizing homeand community services, states may take intoaccount the preferences as well as the needs of thebeneficiary and the family. For example, when ayoung adult male beneficiary with a disabilitylives with his sister and her family, everyone mayprefer, for reasons of privacy, to have a paid personalcare attendant assist with bathing, whereasin the case of an elderly woman living with herdaughter, both may feel that privacy concerns arebetter served by having the informal caregiverassist with bathing.Payment of Family CaregiversFederal Medicaid law permits family members tobecome paid caregivers unless those family membersare legally responsible for the care of an individual(i.e., spouses and parents/guardians ofminor children). The philosophy underlying thispolicy is that Medicaid should not pay a spouse orparent for services that most spouses or parentswould normally be required to provide withoutcharge. However, states have the option to payeven these family members under certain exceptionalcircumstances. For example, they may bepaid for providing skilled nursing services (forwhich there is no presumption that the servicewould "normally" be provided free).Personal care servicesOther than spouses and parents of minor children,states may pay any family members to providepersonal care services, including adult childrenof a parent, parents of adult children, siblings,and grandparents. Friends and neighborsmay also be compensated for providing servicesthat would otherwise need to be purchased onbehalf of the beneficiary. In California's In-HomeSupportive Services (IHSS) Program, for example,about 40 percent of consumer-hired personalattendants are related to the Medicaid beneficiaryand an additional 30 percent are friends, neighbors,or other individuals the beneficiary alreadyknows. 6In the standard application that states complete tosecure Federal approval to operate an HCBSwaiver, HCFA has provided explicitly that statesmay choose whether or not to pay for personalcare (or closely related services) furnished by familymembers who are not spouses of beneficiariesor parents of beneficiaries who are minors. Thus,it is up to each state to decide whether it will makepayments to a beneficiary's relatives to furnishpersonal care/personal assistance, including thecircumstances under which such payments will bemade.If they choose to make such payments, states arepermitted to establish provider qualifications forfamily members that differ from the qualificationsfor agencies or individual contractors whofurnish such services. States that require criminalbackground checks for personal care attendants,for example, may exempt family members. InHCBS waiver programs for people with developmentaldisabilities, the most recent information
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IntroductionPeople of all ages with
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