Adopt An Independent Living Approach Rather Than Medical Model of LTC Services

By Leah Farrell, Policy Analyst, in the Center for Disability Rights blog The traditional model of long term care services emphasizes a medical approach to meeting needs, often involving unnecessary high cost professionals. The independent living (IL) approach to long term care services vests control of services in the consumer rather than the professional. Many of the services that are widely perceived as “medical” are simply a part of daily life to a person with disabilities. The independent living paradigm supports an integrated life in the community, with personal care workers providing needed assistance in tasks ranging from dressing and bathing to managing breathing devices, feeding tubes and catheters. Tasks that hospitals routinely train family members to perform can also be done in a home setting by other laypersons under the direction of the individual or their family member. THE PARADIGM AT A GLANCE DIMENSION MEDICAL MODEL (“Traditional”) INDEPENDENT LIVING MODEL The table below conveys the contrast between the medical model and the independent living model. The fundamental difference between the two models is the contrasting perspectives of people with disabilities versus professionals on the practical realities of living with disabilities. The IL approach is hailed by people with disabilities because it not only produces higher consumer satisfaction, but it is more cost-effective than the traditional medical model. The medical model over-relies on expensive medical professionals and a paternalistic approach to service delivery. Thus, the dominant traditional system is insufficient to meet the needs of the consumers and is more costly to NYS. CDR urges NYS to shift toward an independent living approach by placing control over services with the consumer and reducing dependence on costly professionals. Table As the table conveys, the IL model views the problem as caused by the environment, not the individual. For example, the problem is not that a wheelchair user cannot walk; it is that a ramp is not provided for access to the building. The problem is not that a deaf person cannot hear; it is that sign communication is not available. It removes the blame from the person and the disability (which is non-controllable) and places the responsibility on society (which is controllable). A disability becomes limiting only in the context of an environment that does not accommodate the disability. When the barriers are removed and supports are provided, the disability becomes a manageable part of a full lifestyle. BENEFITS OF INDEPENDENT LIVING The IL approach promotes advocacy, barrier removal, self-help, peer support, and consumer directed services. These concepts empower the individual. This approach results in a distinctly different experience than a person has living under the traditional medical model, which focuses on trying to fix the broken person. Advocacy involves both systems advocacy to affect policy reform and self-advocacy to ensure individuals can attain the services they need. Because disabilities vary drastically, barrier removal directly addresses any obstacles to a productive community-based life for each individual. A systemic approach to barrier removal is also a necessary component to IL because it impacts everyone with a disability as opposed to individualized problem solving—which mimics the medical model approach of treating the broken person. Self-help and peer support are essential to the IL model because they embody the concept of independence within the context of a positive and shared disability identity. Individuals with disabilities offer support, advice, and resources to other people with disabilities so they can live free from agency and institutional controls. People with disabilities receive training on independent living and learn skills which allow them to reduce their reliance on state and federal assistance programs. Finally, consumer directed services allow individuals to receive the services (medical and nonmedical) they require in order to live independently. A consumer directed approach removes the controls from the traditional agency and positions people with disabilities to be in charge of their services and supports. [The concept of consumer directed services is explained further in Vol. 4 of Reforming Long Term Care Services in New York State.]