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Supporting Informal Caregiving 139Examples of Waiver Programs to Support Persons with Developmental DisabilitiesOklahoma. In 1999, Oklahoma launched two HCBS waiver programs for persons with developmental disabilities:one for children who live with their families and another for adults who live with their families. Oklahomalaunched these programs specifically to address the needs of individuals who had been wait-listed for services.In launching these programs, state officials also took steps to embody the principles of individual/family selfdirectionof services. In combination, these programs are expected to make HCB waiver services available to anadditional 1500 individuals. The program for children operates under a cost ceiling of $10,000; the program foradults has a ceiling of $15,000. The difference in the ceilings recognizes that children will be in school, whereasadults may require day support services.The program for adults offers the following services:• homemaker• nutritional services• respite• supported environment• family training• psychological services• residential habilitation• environmental accessibility adaptations• prevocational services• audiology, physical, occupational, and speech therapy services• extended state plan services (adaptive equipment, specialized medical supplies, dental services,and transportation).The services offered in the program for children are more limited—especially with respect to clinic services—because they are generally available for children as Early Periodic Screening, Diagnosis, and Treatment (EPSDT)benefits through the state's regular Medicaid program.Pennsylvania. Pennsylvania's Person/Family-Directed Supports waiver program operates under a $20,000 peryear cost cap. In combination with expansion of the state's long-standing Consolidated Waiver program (underwhich most individuals receive specialized community residential services), this Pennsylvania program is an integralelement of the governor's recently announced multi-year plan to substantially reduce the waiting list for communitymental retardation services.Colorado. Since 1995, Colorado has operated Supported Living Services, a waiver program geared to servingadults with developmental disabilities who live with their families or on their own in the community. Under thisprogram, individuals and families have considerable flexibility in selecting and managing their own supports. Insome cases, "microboards" have been formed that enable families and friends (the person's "circle of support")to directly manage services and supports on behalf of the individual.Other states have submitted or are considering submitting applications to operate similar programs.been tailored to their needs and preferences.Availability of Medicaid funding allows states tooffer more robust services and supports to familiesthan has typically been the case with respectto state-funded family support programs, many ofwhich allot only $3000 to $4000 to a family eachyear. 17Operating distinct waiver programs that targetmainly individuals who live with their familieshas both pros and cons. One of the main advantagesis that state officials and other stakeholdersare often willing to entertain new approaches tofurnishing home and community services whenthey are creating a program as opposed to modifyingone that already exists. Supports and servicescan be selected that are especially relevant to meetingthe needs of people who live with their families,paying particular attention to strengtheninginformal caregiving. The main disadvantageappears to be the administrative complicationsassociated with operating multiple HCBS waiverprograms for the same general target population.Some of the same purposes can be achieved byincluding distinct, specially targeted benefitswithin a single HCBS waiver program. Examplesof this approach include:• Utah. In its single HCBS waiver program for
140 UNDERSTANDING MEDICAID HOME AND COMMUNITY SERVICES: A PRIMERpeople with developmental disabilities, Utahoffers assistance and support services intendedto enable family members with a disability,who so desire, to remain and be supported intheir family homes. The intent is to prevent ordelay unwanted out-of-home placement. Servicesand supports can be provided either inor out of the home and may include provisionsto assist the individual with a disabilityto obtain community supports. They may alsoinclude instructions, supervision, and trainingto the family/caregiver/individual in all areasof daily living. The supports may also includeother activities identified in the individual'ssupport plan as necessary for continued skilldevelopment, including:— behavior supports— special summer programs— social skills development— appropriate leisure time activities— developing interventions to cope withproblems or unique situations— instruction and consultation for the beneficiaryand other family members.Services can be obtained through providerswho have contracts with the state to providefamily support services. Alternatively, familiesmay choose the "family choice model," inwhich the family hires and trains the individualsto provide the supports. In this model, thefamily may use individuals age 16 and olderas direct providers of support.• Illinois. 18 The Illinois HCBS waiver programfor people with developmental disabilitiesincludes a supported living option intendedfor persons who live with their family or ontheir own. Service plans under this option aresubject to a total cost cap of $18,000 per year.Within that cap, individuals and families mayselect from: (a) distinct services available onlyto individuals who select the supported livingoption (intensive case management, personalcare, skilled nursing, respite, and transportation)and (b) certain services available to otherprogram participants as well (day habilitation,behavioral services, and therapy services). Individualsand families may select the servicesthey want as long as the total cost of the servicesdoes not exceed the maximum allowed.The supported living option is a distinct benefitnested in the state's HCBS waiver program.This enables states to define distinct benefitsespecially geared to individuals who live withtheir families.Whatever approach a state takes, it can strengtheninformal caregiving by ensuring that all its HCBSwaiver programs—regardless of target population—containa wide, diverse menu of servicesand supports that are important for individualswho live with their families as well as those wholive on their own.Endnotes1. The primary contributors to this chapter are GarySmith, Pamela Doty, and Janet O'Keeffe.2. Unless otherwise noted, data on caregiving aredrawn from the following publication: Office of theAssistant Secretary for Planning and Evaluation andAdministration on Aging (1998). Informal caregiving:Compassion in action. Washington, DC: Department ofHealth and Human Services. Statistics on informalcaregiving may vary according to the source becauseresearchers use different definitions of caregiving andinclude different populations in their sample. Forexample, if one study examines informal care providedto people age 50 and older and another study looksonly at care provided to people age 65 and older, therewill be differences in the number of caregivers and theestimated economic value of their caregiving.3. Numbers are based on data from the 1994 NationalLong-Term Care Survey. Data analyses were carriedout by Pamela Doty of the Office of the AssistantSecretary for Planning and Evaluation, U.S. DHHS,and Mary Elizabeth Jackson of the MEDSTAT Group,Cambridge, MA.4. Larson, S., Lakin, C., Anderson, L., Kwak, N., Lee,J.H., and Anderson, D. (2000). Prevalence of mental retardationand developmental disabilities: Analysis of the1995/1995 NHIS-D. University of Minnesota: Researchand Training Center on Community Living, Instituteon Community Integration.
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