IDD and Dementia. 5.2 Home and Community-Based Services


The primary funding vehicle through which states provide Medicaid HCBS to individuals with IDD is through Section 1915(c) of the Social Security Act HCBS waiver programs. Enrollees in IDD waiver programs accounted for over 40% of total HCBS waiver participants (approximately 582,000 enrollees of a total of 1.4 million enrollees), but 70% of all spending on HCBS waivers ($27.4 billion of a total of $38.9 billion) in FY2011 (Ng et al., 2014). In FY2011, the average per enrollee spending was $47,058 for individuals with IDD in HCBS waivers, compared to the average per enrollee spending of $12,283 among enrollees aged 65 or older and enrollees with physical disabilities in HCBS waivers (Ng et al., 2014).

Expenditures for people with IDD are high, in part, because people with IDD use more round-the-clock in-home and out-of-home residential support rather than services provided during part of the day (Rizzolo et al., 2013). A study of 88 HCBS waivers found that more than half of spending for individuals with IDD (53%) was for residential habilitation services, which includes such services as assistance with ADLs, community inclusion, transportation, adult educational supports, and social and leisure skill development, that help the participant to reside in the most integrated setting appropriate to his or her needs (Rizzolo et al., 2013).

5.2.1 In-Home Support Services

Almost three-quarters of individuals with IDD (71% in FY2013) live with family caregivers (Braddock et al., 2014). Of these individuals living with family caregivers, almost a quarter (24%) reside with family caregivers who are aged 60 or older and another 35% with family caregivers who are between age 41 and 59 (Braddock et al., 2014). When examining individuals with IDD who use publicly financed LTSS (i.e., served by the state IDD agencies), an estimated 56% lived in the home of a family member in FY2012 (Larson et al., 2014). Of these individuals with IDD living in the home of a family member, 39% received supports funded through a Medicaid HCBS waiver in FY2012. The remaining 61% were on the caseloads of state IDD agencies but may not have been receiving any Medicaid HCBS waiver LTSS or state-funded LTSS except perhaps case management. Some may have been using a Medicaid state plan service benefit such as personal care assistance or a family subsidy funded entirely by the state IDD agency (Larson et al., 2014).

Services and supports that states offer through their Medicaid program or state-only funding to families of adults with IDD include respite services, financial services such as cash subsidies and vouchers, in-home supports such as personal assistance or homemaker services, assistive technology and environmental modification, adaptive medical equipment, health and professional services, family counseling or training, parent support groups, transportation, recreation activities, specialized clothing, and dietary services (NTG, 2012).

Seven percent ($4.3 billion in FY2013) of total public spending for individuals with IDD went toward supporting family caregivers; 464,043 participants received these services (Braddock et al., 2014). The primary difference between Medicaid and state-only funding for family support programs is that the Medicaid's family support programs must be for the direct benefit of the Medicaid beneficiary. These services generally cover respite and family training services. Medicaid funding has generally allowed states to offer more comprehensive support to families than is typical under state-only funded family support programs (O'Keeffe et al., 2010).

Caregiver training and education services are allowable services under Medicaid HCBS waivers. Training and education can cover a wide range of topics, such as instructions for using equipment specified in a service plan and ensuring compliance with treatment regimens. It may include (a) paying trainers to come into the home to teach skills and techniques for addressing the program participant's needs; (b) paying for caregivers to attend special training and education classes; and (c) paying the expenses associated with caregivers attending workshops and conferences where they learn how to better meet the needs of individuals with disabilities (O'Keeffe et al., 2010).

Individuals with IDD who do not reside in supervised residential settings often receive support and personal assistance services, which include assistance with ADLs and IADLs but not medical or skilled nursing services. These types of services are supplied by direct support workers, direct support professionals (DSPs), home health aides, certified nursing assistants, personal care aides, nurse's aides, homemakers, and companions. Medicaid finances a great deal of these services, often through the Medicaid personal care service state plan option or Medicaid HCBS waivers. In FY2013, 13% ($8.0 billion) of total public spending on individuals with IDD was for supported living and personal assistance services (Braddock et al., 2014). Just under 300,000 (293,956) individuals with IDD accessed these support services in FY2013 (Braddock et al., 2014). Some states use HCBS waivers, sometimes referred to as "supports waivers," to provide programs intended primarily to provide services and supports to meet the needs of individuals with IDD who live with their families or on their own (O'Keeffe et al., 2010).

5.2.2 Non-Institutional Residential Care Services

As of 2012, almost 450,000 people with IDD lived in non-institutional residential settings other than the home of a family member (Larson et al., 2014). These types of non-institutional settings that serve individuals with IDD provide assistance in acquiring, retaining, and improving self-help, socialization, and/or adaptive skills by a provider with round-the-clock responsibility for the residents' health and welfare in a residence that is not a single-family home or apartment.Overall, 51% of all people with IDD not living with a family member shared a home with three or fewer people with IDD, and 77% shared a home with six or fewer people. State IDD agencies reported in 2012 that 58,753 people with IDD lived in 35,830 host family or family foster care settings with an average of 1.6 people with IDD living in each host home or family foster care setting (Larson et al., 2014). Adult foster homes are generally single-family residences that offer 24-hour care in a home-like setting. Adult foster home providers commonly provide assistance with ADLs (e.g., eating, bathing, and dressing), household chores, and meal preparation. Other services--such as arranging for transportation or providing social or recreational programming--are also common (Mollicaet al., 2009). In a Medicaid HCBS waiver program, adult foster care is often considered a residential habilitation service for individuals with IDD (O'Keeffe et al., 2010). About 58% of total public spending (federal and state Medicaid, state only, and federal only) for individuals with IDD was for smaller residential settings in FY2013 (Braddock et al., 2014).

5.2.3 Community Habilitation or Therapy Services

Community habilitation or therapy services, including occupational, physical, and speech and language therapies, which enable people with IDD to acquire or improve skills to help them become more independent, are used by individuals usingin-home care and those in more formal residential care facilities. According to CMS, habilitative services are designed to assist individuals in acquiring, retaining, and improving the self-help, socialization, and adaptive skills necessary to reside successfully in home and community-based settings (Section 1915(c)(5) of the Social Security Act). Habilitation therapists work with individuals with IDD to teach a variety of important skills and improve behavior. These services may include physical and occupational therapy, speech-language pathology, and other services.

5.2.4 Adult Day Services

Adult day service providers are community-based centers that provide an array of LTSS, including structured activities, health monitoring, socialization, and assistance with ADLs, to seniors or younger adults with disabilities on a nonresidential basis (Dwyer et al., 2014). In general, there are three types of adult day centers: (1) social (which provide meals, recreation, and some health-related services); (2) medical/health (which provide social activities and more intensive health and therapeutic services); and (3) specialized (which provide services only to specific types of care recipients, such as those with dementia or developmental disabilities) (National Adult Day Services Association, 2015). For individuals with IDD, adult day service centers provide day habilitation services that focus on enabling the participant to attain or maintain his or her maximum potential and coordinate any needed therapies in the individual's person-centered services and supports plan, such as physical, occupational, or speech therapy (CMS, 2011). In 2011, an estimated 500,000 individuals with IDD received day services and supports (Butterworth et al., 2011). Medicaid covers many of the individuals who receive services from adult day centers in the United States.

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