Long-term services and supports (LTSS) encompasses the broad range of paid and unpaid medical and personal care assistance that people may need – for several weeks, months, or years – when they experience difficulty completing self-care tasks as a result of aging, chronic illness, or disability. LTSS provide assistance with activities of daily living, such as eating, bathing, and dressing, and instrumental activities of daily living, such as preparing meals, managing medication, and housekeeping. They also assist people to participate fully in all aspects of community life, including personal, professional, and social engagement. LTSS include, but are not limited to, nursing facility care, adult daycare programs, home health aide services, personal care services, transportation, and supported employment, as well as assistance provided by a family caregiver. Publicly funded LTSS are provided through State IDD agencies with funding from federal sources, such as Medicaid, and from state sources.

 

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Where people live

Over the last 30 years, people with intellectual or developmental disabilities (IDD) are shifting from living in large facilities to smaller homes in the community. People with IDD live in many different types of settings including homes of their own, with a family member, with a host or foster family, or in a provider owned or operated setting. Most live with a family member and receive informal supports from family members and friends. Some also receive supports funded by Medicaid or State funding authorities.

Of the 1,211,535 people with IDD receiving LTSS in 2015, 5% lived in a host of foster family home; 12% lived in a home they owned or leased; 26% lived in a group home, intermediate care facility for individuals with intellectual and developmental disabilities (ICF/IDD), or other group setting; and 58% lived in the home of a family member. The vast majority of LTSS non-family residential settings (84%) served 3 or fewer people; 12% served 4 to 6 people; 3% served 7 to 15 people; and 0.4% served 16 or more people.

For more information on where people with IDD live, visit risp.umn.edu.

Deinstitutionalization and decongregation

Over the past several decades, rapid deinstitutionalization and community integration of people with ID/DD have resulted in remarkable systems transformation. In the 1950s families, parent associations, professionals, and policymakers protested that large state-operated IDD institutions were overcrowded, understaffed, and sometimes unfit for human habitation. Professionals including Wolf Wolfensberger and Bengt Nirje argued that segregating and institutionalizing people based on disability enhanced negative stereotypes and was dehumanizing. Instead, they should be supported to live, play, work, and learn in culturally normative physically and socially inclusive settings regardless of the type or severity of a person's disability. Legislative action during the 1960s and 1970s propelled a movement to deinstitutionalize services for people with IDD and to provide more inclusive services and supports in community settings.

The transition from institutional to community living, however, has not been without its struggles. Concerns over long waiting lists for services, significant stress on family caregivers, lack of specialized caregiver training and high rates of staff turnover in community settings have led some to call for the creation of new segregated facilities that can provide more targeted support.

These concerns are both real and significant. However, the solution is not to return to the building of large, segregated, isolated institutions and to call them farmsteads, campuses, or some other label. Over the past half-century, we have learned that congregating people with IDD in large institutions does not promote positive outcomes and limits community interaction and involvement for some of our most vulnerable citizens. Solutions should come from the experience of people with IDD and from five decades of research, practices, and policies. These evidence-based sources will inform what policies should be implemented to efficiently and effectively use our limited resources to address these challenges and ensure the best possible quality of life for all.

Funding for services and supports

Medicaid long-term services and supports (LTSS) programs have become more complex, offering new and different funding authorities requiring states that offer Medicaid-funded services to adhere to new program rules. These complexities are important to consider when comparing states or interpreting data on service utilization or expenditures. Eligibility, service definitions, and the populations served all vary by state. People who are navigating the systems will often find that each state varies greatly depending on how services are provided and by what funding authority or authorities.

For more information on how services for people with IDD are paid for, visit risp.umn.edu.

Key policies that drive where people live

Long-term services and supports (LTSS) in the United States are influenced by Medicaid statute and rule, as well as federal laws such as the Rehabilitation Act of 1973, the Americans with Disabilities Act, the Supreme Court’s Olmstead decision, and other federal and state legislative actions, judicial decisions, and policies. On March 17, 2014, the Centers for Medicare and Medicaid Services (CMS) issued Home and Community-Based Services (HCBS) rules establishing new guidelines for services and supports financed through several Medicaid LTSS funding authorities. The HCBS rules require person-centered planning and service delivery and prohibit conflicts-of-interest for those who develop plans of care. They require that recipients have full access to the greater community including competitive integrated employment; choice of services and service settings, daily activities, physical environments, and with whom to interact; freedom to exercise individual rights of privacy, dignity, respect; and freedom from restraint and coercion.

Visit www.medicaid.gov for more information.