We often hear the term “long-term care continuum” outlining our options for support services. But, what specifically are some of the choices within the “continuum” and what distinguishes one from the other?
Technically, the “long-term care continuum” consists of the diverse ways we can access a wide variety of products and services supporting us as we experience chronic illness, disability, effects of aging, and so on. These products and services are too numerous to name, but include such things as clinical, rehabilitation, nutritional, recreational, and chore services, in addition to the more familiar activities of daily living help. Although the potential methods of delivering these products and services are also countless, generally, they’ve been grouped into a few specific categories depending upon the specific environment the products and services are delivered within as well as who manages the delivery process. Therefore, the type of provider commonly defines a specific location within the continuum: nursing facilities (nursing homes, intermediate care), group homes, shared housing, assisted living, traditional home care, home care communities, home care cooperatives, PCA Choice, and cash and counseling.
As we move from one category, or position, within the continuum to another, various key differences exist among levels of privacy, freedom of expression, independence, authority, responsibility, and security. Privacy means the state of being free from unwanted or unwelcome interruptions or presence of others. Freedom of Expression is defined as the ability to alter your environment to reflect who you are (e.g., through decorating, remodeling). Independence and authority are freedom from control or influence of another or others and the power to act or enforce policies and procedures. Responsibility means the obligations to perform a set of tasks and ownership of outcomes/consequences resulting from those actions. And finally, Security is defined as freedom from risk or danger; safety.
Nursing home facilities provide services, usually for individuals with more significant medical needs, seven days a week 24-hours per day within an institutional setting. Each resident usually shares a room and common living areas (e.g. dining room, living room, entertainment room, etc.). These facilities provide both
scheduled and unscheduled services. Therefore, this model addresses the concerns of an individual relying solely on such assistance with scheduled and unscheduled needs. Although the level of security is quite high, the levels of privacy, freedom of expression, independence, authority, and responsibility are quite low.
Similar to nursing homes, group homes provide services, usually for individuals with less significant nursing requirements, seven days a week 24-hours per day within a residential-like setting. Each resident still may share a bedroom with a roommate and common living areas with other residents. Plus, these homes also provide both scheduled and unscheduled services. Therefore, this model addresses the concerns of an individual relying solely on help with scheduled and unscheduled tasks as well. Here again, the level of security is quite high, the levels of privacy, freedom of expression, independence, authority, and responsibility, although a little higher than nursing homes, remain quite low.
Unlike group homes, shared living provides home care services, often seven days a week 24-hours per day, within a shared residence. Typically, each resident has a private bedroom, still shares the common areas with other housemates, and has much greater independence regarding activities than previous categories. This option may incorporate a “family” environment, including congregate activities and dining for residents and staff if they choose to participate. Due to around-the-clock staffing, this arrangement again ensures that not only scheduled, but especially unscheduled, services are available. Shared living still offers a high level of security and yet provides greater privacy, freedom of expression, independence, authority, and responsibility compared to the previous alternatives.
According to the Assisted Living Federation of America (ALFA), assisted living consists of a combination of housing, personalized supportive services and health care designed to meet the needs — both scheduled and unscheduled — of residents. Unlike the previous categories, assisted living programs usually incorporate private units, like apartments, for each resident. However, programs may include congregate dining, activities, and transportation for participants. Assisted living maintains a high level of security and greatly expanded privacy, freedom of expression, independence, authority, and responsibility.
Home Care Communities
The next step we take leads us to what I refer to as home care communities. Usually, a traditional home care provider will offer services to a group of individuals residing in relatively close proximity within a residential setting (e.g. apartment building). Such programs still meet both scheduled and unscheduled needs within private residential units. However, unlike the previous categories, home care communities do not integrate congregate dining, activities, or transportation for participants. Therefore, a high level of security, privacy, and freedom of expression are offered while providing greater independence, authority, and responsibility.
Traditional Home Care
Then comes traditional home care, where individuals choose their residential location and hire an agency to deliver home health care. Unlike the alternatives described thus far, due to smaller individual resources, support staff usually visit for a specified period of time, perhaps visiting several times per day, to provide assistance. Therefore, scheduled assistance is still provided, but unanticipated needs falling outside of these scheduled visits must either wait or be satisfied in other ways. Thus, some security is traded for greater authority and responsibility.
Home Care Cooperatives
Building upon traditional home care while borrowing concepts from PCA Choice creates what I refer to as home care cooperatives. These cooperatives, like home care communities, exist within residential settings (e.g., apartment buildings, townhouse communities, multiplexes) wherein members live in relatively close proximity. Different from home care communities, the individual members, clients, agree upon the location. Plus, incorporating aspects of PCA Choice, the group of members selects, hires, trains, and manages their health care staff instead of being assigned staff managed by an agency. Therefore, like home care communities, scheduled and unscheduled assistance is available, thus a high level of security is maintained while achieving a high level of authority and responsibility.
Currently in Minnesota, PCA Choice offers the highest levels of privacy, freedom of expression, independence, authority, and responsibility. However, the tradeoff results in the lowest level of security. An individual is solely responsible for recruiting, hiring, training, managing, and arranging back up plans in the event a home care assistant becomes ill, injured, or otherwise unable to help. Because there are few administrative expenses (e.g. just background checks, payroll, and billing), more resources are left over to pay employees a higher hourly wage.
Cash and Counseling
Although not available in Minnesota at this time, a model referred to as “cash and counseling” is being tested in Arkansas and a few other states. Expanding upon PCA Choice, Cash and Counseling eliminates the need for someone else to process payroll and billing. The client is provided the cash directly and is responsible for paying staff members, withholding taxes, purchase supplies and equipment, etc.. The client is able to access “counselors”/consultants as resources when questions/challenges arise. As a result, an even greater of independence, authority, and responsibility are achieved.
So, as you can see, a wide variety of options exist within the “long-term care continuum” depending upon the levels of privacy, freedom of expression, independence, authority, responsibility, and security preferred or required.
Although I have just recently learned of this book, and have not had a chance to pick it up yet alone read it, it expands upon this discussion of long-term care alternatives:
Independent Living: A Viable Option for Long-Term Care written by Andrew I. Batavia and published in 2003 by ABI Professional Publications; Clearwater, Fla..
Complex? Well, at least it isn’t the space-time continuum! I got a headache just mentioning THAT!