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under an HCBS waiver program. This servicemay include: (a) underwriting the costs oftrainers coming into the home to teach skillsand techniques for addressing the beneficiary'sneeds, so that training can be customizedto the individual and the caregivers; (b)underwriting the registration and materialscosts for caregivers to attend special trainingand education classes; and (c) paying theexpenses associated with caregivers attendingworkshops and conferences where they canobtain information that will better enablethem to meet the needs of the beneficiary.(These expenses might include conferencefees, arranging substitute care while caregiversare away, or paying for personal assistanceat the training conference itself if thebeneficiary accompanies the caregivers.)Caregiver training may also be providedunder the rehabilitation option. Rehabilitationservices in Kentucky, for example, includehome visits to: (a) assist family members andseriously mentally ill beneficiaries to practiceeffective communication techniques to defusestressful situations that occur in home settings;and (b) coach family members trying tomanage a severely acting-out child and toimprove their behavior management skills.• Day Care. To accommodate caregivers' workschedules, states may purchase day care services.These may include before- and afterschoolday care or day camp when school isout. The service can include sending a paidworker to pick up the beneficiary from schooland to provide care until the parent(s) arrivehome from work. In its HCBS waiver programfor people with developmental disabilities, forexample, Utah provides "latch key supports"specifically for this purpose. Like any otherMedicaid service, such services may beauthorized only to the extent that they cannotbe obtained from alternative funding sources.Adult day care services are also beneficial tofamilies providing informal care to older personswith Alzheimer's disease or other dementias,and to any informal caregivers who havean outside job and who are concerned aboutthe safety of a person left alone at home.Supporting Informal Caregiving 137• Family-Directed Services. Many families preferto directly manage the services and supportsthe beneficiary will receive. They wantto make decisions concerning the workerswho will come to the family or the beneficiary'shome to provide assistance. They alsowant control over the "care schedule." In thecase of children with disabilities, the family—not the child—is the decision maker concerningservices and supports. In the case ofadults, families also may direct services andsupports, especially when the individual isunable to do so. In this vein, states may elect toprovide families additional assistance in directingservices and supports, either throughtheir service coordination systems or byauthorizing families to secure the services of"support brokers" or "personal agents" toassist them in managing supports in full or inpart. Pennsylvania's Person/Family-DirectedSupports HCBS waiver program for peoplewith mental retardation specifically makesthis type of support available to families.Supporting Families of People withDevelopmental DisabilitiesIn the area of long-term care services and supportsfor people with developmental disabilities, thereis a long, robust history of state-operated "familysupport" programs. The aim of these programs isto provide supports that benefit both the individualand the family and, thereby, contribute tomaintaining and sustaining the family unit. Inmany states, these programs have been in operationfor nearly three decades. Many of the principles,values, and practices that have been incorporatedinto HCBS waiver programs for people withdevelopmental disabilities are equally relevant infurnishing HCB services to individuals who haveother types of physical and mental disabilities andare served in other types of waiver programs. Andmany states have similar programs targeted tofamily members providing eldercare, especially topersons with Alzheimer's disease or other formsof dementia. These programs are financed eitherentirely with state funds or through a combinationof funding streams that may include someMedicaid funding. 12
138 UNDERSTANDING MEDICAID HOME AND COMMUNITY SERVICES: A PRIMERIn addition, many states have taken importantsteps to support adults with developmental disabilitieswho want to have a home of their ownrather than be served in a provider-operatedgroup living arrangement. These "supported living"arrangements seek to combine paid andinformal supports to enable individuals to live asindependently as possible in their communities.Until recently, however, many states tended toconfine provision of HCB waiver services to personsserved in group homes or similar specialized,provider-operated living arrangements. 13Two major factors help explain why some stateshave not employed HCBS waiver financing forfamily support services. First, until states weregiven the go-ahead to expand their HCBS waiverprograms to whatever level they desired, somestates targeted HCB waiver services mainly topersons in the most costly settings. Second, stakeholdersin many states have been leery of"Medicaiding" family support services, for fearthat the result would undermine a very strong traditionof family control and direction of such services.In some states, for example, developmentaldisabilities family support programs operate bygiving the family a monthly cash stipend. Thisgives the family complete control with respect tothe goods and services they will purchase to meetthe individual's and/or the family's needs. SinceFederal Medicaid policy does not enable cash paymentsto be made to or on behalf of beneficiaries,such cash stipend programs have been "off-limits"for Medicaid financing.But times have changed. States are now being confrontedwith extremely high demand for homeand community services for people with developmentaldisabilities. Many different factors accountfor this high demand. One factor is the increasinglongevity of people with developmental disabilities,many of whom now live with parents whothemselves are elderly and less able to meet theneeds of their adult children. 14 Another is that,unlike in the past, it is increasingly common forpeople with developmental disabilities to outlivetheir parents. Many states, even those that havesubstantially expanded the availability of homeand community services over the past decade,have very long waiting lists for services. 15As a consequence, many states are rethinking therole that Medicaid HCBS waiver services mightplay in meeting the needs of people with developmentaldisabilities—particularly with respect tobroadening availability of such services to individualswho live with their families or whereother informal caregivers are providing support.While requests for services and supports oftentake the form of families seeking a group homeplacement, frequently (although not universally)in-home and family support services can meet theneeds of the person without the person's having toleave the family home. States that make servicesand supports more readily available to peoplewith developmental disabilities who live withtheir families in fact experience lower demand forgroup home and similar services. 16This rethinking is taking various forms. Somestates have launched distinct HCBS waiver programsintended mainly to underwrite servicesand supports for these individuals. These programsdo not offer group home and other standardresidential services. Instead, they have beencrafted principally to meet the needs of individualswho live with their families or on their ownwith informal caregiving available to them. Theseprograms usually operate under stricter cost capsthan the state's parallel HCBS waiver program,under which traditional out-of-the-family-homeresidential services are furnished. These strictercaps recognize that individuals have informalcaregiving available. They also permit the state togive individuals and families considerable flexibilityin selecting the mixture of services and supportsthat best meets their needs. It is important toreemphasize here that family support must bedirected toward serving the beneficiary. Servicesthat are primarily for the benefit of the family arenot coverable under a Medicaid HCBS waiver.Use of such caps helps the state avoid imposingservice-by-service restrictions on utilization inorder to maintain program cost-effectiveness. Theflexibility afforded individuals and families alsopermits states to reflect many of the principles andvalues under which developmental disabilitiesindividual and family support programs haveoperated for many years: namely, that the individualor the family be in a position to make surethat the services and supports they receive have
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Understanding MedicaidHome and Comm
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IntroductionPeople of all ages with
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Introduction 31998—is the group m
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CHAPTER 1Medicaid Coverage of Home
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Medicaid Coverage of Home and Commu
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