Full PDF Version - ASPE - U.S. Department of Health and Human ...

Consumer-Directed Home and Community Services 117care management as typically practiced and supportingindividuals in directing and managingtheir own services. 5The principles of CD services are also reshapingthe provision of home and community services forindividuals with cognitive disabilities. For example,self-determination for people with developmentaldisabilities embraces the principle thatindividuals should have the authority to select,direct, and manage their services. In self-determination,individuals may enlist and invite friendsand family members (in the form of a “circle ofsupport”) to assist them in directing and managingservices. The person’s legal representative or asurrogate decision maker may also assist andadvise the individual and perform some servicemanagement tasks.Until recently, CD models have been seen asappropriate mainly for younger adults with physicaldisabilities, because these models originatedin the independent living movement initiated bythis group. However, research suggests that consumersof all ages and their families would like tobe more actively involved in planning and directingthe services they receive. 6 Not surprisingly,state policymakers, program administrators, andconsumer constituency groups are increasinglyrecognizing CD principles as having broad applicabilityacross the full spectrum of individualswho need home and community services, includingelderly persons and persons with cognitivedisabilities (e.g., persons who have a severe mentalillness, a developmental disability, or dementia).CD service models are seen as an importantmeans to improve consumer satisfaction withservices, involve individuals and families inimproving the quality of services, and promotecost-effective service delivery.Limits on the permissible scope of consumerdirection are necessary, of course, when servicesare financed with public funds. In many CD servicemodels, limitations on consumer choice andcontrol are delineated—with a clear distinctionbetween the gate-keeping and monitoring functionsnecessary to maintain fiscal control and publicaccountability, on the one hand, and the CDfeatures of the model, on the other.It is also important to note that CD models can(and usually do) operate side by side with professionallymanaged service delivery models. Individualsand families differ in the extent to whichthey wish to take on full management of their services.Some people want to exercise a high level ofcontrol, while others prefer to have services andsupports managed by a provider agency—so longas the agency is responsive to their needs and preferences.Consequently, neither individuals norstates face an either/or proposition. What is importantis that home and community services afford afull range of options for consumer direction.There is little doubt that CD service principles willfundamentally reshape the future provision ofhome and community services for people with alltypes of disabilities.Consumer Direction and MedicaidAs the role of the Medicaid program in underwritinghome and community services hasexpanded, questions have arisen concerning thecompatibility of CD models and principles withMedicaid requirements. Part of the mythologythat surrounds the Medicaid program is thatFederal rules dictate the use of a medical or professionallydirected model and that, therefore, theprogram cannot accommodate or might actuallybe hostile to CD models in the home and communityservices arena. This is not the case.For example, Medicaid can cover long-term servicesprovided by in-home aides or attendants inthree ways—under the mandatory home healthstate plan benefit, the personal care servicesoptional state plan benefit, and 1915(c) home andcommunity-based services waiver programs. Ofthese, only coverage under the mandatory homehealth benefit limits the provision of services toMedicare/Medicaid certified home health agenciesthat meet Federal “conditions of participation”—conditionsthat limit the extent to whichindividuals can direct their own services. Only afew states (e.g., Colorado, Delaware) finance evena small amount of long-term home attendant careunder the home health benefit. In no state, however,is the home health benefit the only or even