IDD and Dementia. 5.1 Long-term Services and Supports Financing System for Individuals with Intellectual or Developmental Disabilities


Adults with IDD often require services and supports that focus on maintaining or improving functioning, such as providing assistance with basic tasks of everyday life (e.g., bathing or dressing), or with skills related to independent living (e.g., preparing meals or managing money). As of June 30, 2012, almost a quarter of the estimated 4.7 million people with IDD in the United States1 (24% or 1.1 million) received LTSS through publicly funded state IDD agencies (Larson et al., 2014).

The programs and policies under Medicaid are key to financing services and supports provided to individuals with IDD. Medicaid accounted for 78% of total public spending on individuals with IDD in FY2011. The remaining 22% of public spending on individuals with IDD included 12% for state-only programs that generally supported county government-operated group homes and day programs, or other community supports. Other federal funds, including Supplemental Security Income payments and Title XX Social Services Block Grant funding, accounted for 10% of spending (Braddock et al., 2014).

Historically LTSS were primarily provided in institutional-based settings for individuals with IDD (e.g., intermediate care facilities for individuals with IDD [ICF/ID]). Now, the large majority of Medicaid LTSS spending for individuals with IDD is for home and community-based services (HCBS). Spending for individuals with IDD accounts for 70% of all spending on Medicaid HCBS waivers (Ng et al., 2014). The concentration of Medicaid spending on HCBS rather than institutional-based LTSS for individuals with IDD varies widely across states. For example, in FY2013, New York state ranked number one for spending on IDD and HCBS with 51%2 of their HCBS Waiver spending going towards IDD. Other examples of the top five include Maine at number two, Vermont at number three, Washington, DC at number four, and Minnesota at number five. Mississippi came in at 50th only 19% of LTSS spending for individuals with IDD on HCBS (Braddock et al., 2015).

Table 1 identifies the primary services that individuals with IDD generally access, including their estimated expenditures and number of service users. These services include the following categories: in-home support services that are non-medical, non-institutional residential care facilities, community habilitation or therapeutic services, adult day services, and intermediate care facilities for individuals with IDD. Other than the intermediate care facilities for individuals with IDD, these services are not specific to individuals with IDD but are the services most relevant to the needs of individuals with IDD.

TABLE 1. LTSS for Individuals With IDD--In-Home Support Services (Nonmedical)
Provider Type Definition Estimated Expenditures Estimated Number of Service Users
Personal Care Assistant Services Home care services that are not considered skilled medical care. Services include assistance with ADLs (e.g., bathing, dressing, eating) and instrumental activities of daily living (IADLs) (e.g., money management, medication). The providers include home health aides, certified nursing assistants, personal care aides, nurse's aides, homemakers, and companions. 13% of total public spending for individuals with IDD went toward personal care assistance services in 2013a 293,956 individuals accessed in FY2013a
Family Support Services Services and supports that provide support to caregivers of individuals with IDD. Services 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 and/or training, parent support groups, transportation, recreation activities, specialized clothing, and dietary services. 7% of total public spending for individuals with IDD went toward family support programs in FY 2013a 464,043 individuals accessed in FY2013a
Non-Institutional Residential Care Facilities and Services Residential support services that focus on individuals with IDD. The residential facilities 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. 63% of total public spending for individuals with IDD is for residential care facilities and services that have 15 or less beds in 2012.b 422,654 individuals with IDD living in residential care facilities in 2012: b
366,191 individuals with IDD residing in residential care facilities with 1 to 6 beds
56,463 individuals with IDD residing in residential care facilities with 7 to 15 beds.
Community Habilitation or Therapeutic Services Enable individuals with IDD to acquire or improve skills to help them become more independent. 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 for people with developmental disabilities. Not available Not available
Adult Day Services Regularly scheduled activities in nonresidential settings. Activities include assistance with or improvement in self-help, socialization, and adaptive skills that enhance social development and develop skills in performing ADLs and community living. Adult day services for individuals with IDD may focus particularly on employment-related or educational instructions. Adult day services also include meals and day habilitation services that focus on enabling the participant to attain or maintain his or her maximum potential and are coordinated with any needed therapies in the individual's person-centered services and supports plan, such as physical, occupational, or speech therapy. Not available Estimated around 500,000 in 2011c
Intermediate Care Facilities for Individuals with ID/DD Diagnosis, treatment, or rehabilitation for individuals with intellectual disabilities; provides, in a protected institutional setting, ongoing evaluation, planning, 24-hour supervision, coordination, and integration for health or rehabilitative services to help individuals function at their greatest ability. $12.8 billion in 2012d 95,500 residents in 2010e
  1. Braddock et al., 2014.
  2. Larson et al., 2014.
  3. Butterworth et al., 2011.
  4. Eikenet al., 2014a
  5. Eikenet al., 2014b


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