Long-term Services and Support (LTSS) and Home and Community-Based Services (HCBS)
There is much about the last stage of life that no one can control which is one reason being old occasionally feels unsettling. However, there are services to address needs that arise as we age that offer a degree of security and comfort. The bad news is that locating the right service at the right time is nearly a full time job because the field is crowded, complex and expensive. Just when elders want to keep things simple, taking care of oneself and one’s home becomes complicated but it is possible and is well worth the effort.
What we are talking about here are Long Term Services and Support (LTSS) and Home and Community-Based Services (HCBS). These are various kinds of services delivered in homes and in communities to elders either temporarily or permanently.
There is a common perception that Medicare takes care of old Americans and can therefore be expected to pay for LTSS and HCBS. Unfortunately, Medicare pays for very few of these services and only under strictly limited circumstances. Elders are pretty much on their own for identifying, managing and paying for assistance. It is best to figure out the lay of the land before services are needed even though it takes effort and can even involve hiring an attorney to get needed services for which one is eligible.
Long Term Services and Support (LTSS) include personal care and complex care. Volunteers usually cannot provide these services. These are:
1. personal care on two levels:
a. instrumental activities of daily living – cleaning, transportation, shopping, home maintenance, paying bills, etc. Volunteers can provide these services.
b. activities of daily living - bathing, dressing, toileting, etc
2. complex care (medication management, wound care).
Home and Community-Based Services (HCBS) are the services delivered in the home or in the community to elders needing LTSS assistance by entities that provide homemaker services; home health services; and miscellaneous services such as transportation, meals, adult day care, etc. Neighbor to Neighbor in the Nenes is an HCBS provider for Indianhead/Lehigh elders.
Funding for HCBS comes from a variety of sources including state and federal governments, the philanthropic sector (individual donors, corporations, foundations) and via private pay i.e. elders needing services pay for them. If services are needed and an elder cannot pay for them, a family member may begin to provide them or the scramble for free or low cost services from a nonprofit or public provider begins.
The Agency for Health Care Administration (AHCA), Florida’s chief health policy and planning entity, licenses companies providing HCBS services such as homemaker services and home health services. The Agency provides a website, www.Floridahealthfinder.gov, that is a good resource for information about licensed providers.
As a non-profit, volunteer organization, Neighbor to Neighbor in the Nenes does not have to have a license from AHCA to provide our free services to Indianhead/Lehigh elders. Driven by compassion and community spirit instead of profit, N3 determines its standards of service. However, it is not possible for one organization to meet all needs so elders may need to access some of the following HCBS providers.
In the Tallahassee area, there are 90 licensed companies providing homemaker and companion services. These services include housekeeping, preparing and serving meals, helping with shopping, providing rides, and routine household chores and companionship in a home. By law, homemakers and companions may not provide hands-on personal care, such as help with bathing, and cannot give medications. Companies charge for these services and insurance may or may not pay for them.
There are 22 home health agencies in Leon County. Some of the services they provide include nursing care; physical, occupational, respiratory, and speech therapy; home health aides; medical equipment and supplies as well as homemaker and companion services.
HCBS are precisely the services many elders need to stay in their homes as they age. Yet Florida, even though it is a magnet for retirees, is literally the worst state in the nation in the provision of these services to elders needing and eligible for them.
AARP looks at the availability of HCBS and other Long-Term Services and Support for elders across the United States. Every three years it releases a report comparing states on measures of affordability and access, choice of setting and provider, quality of life, quality of care, support for family caregivers, and effective transitions (hospital to home, for example). When compared with 49 states and the District of Columbia, Florida ranks last overall. The complete report can be downloaded at Long Term Care Scorecard.
There is an extensive waiting list in Florida for HCBS although it’s difficult to document the true extent of need due to changes to the wait list maintained by the Florida Department of Elder Affairs. Effective in 2021, only individuals who have been screened and assigned a high priority rank are placed on the waiting list not the thousands and thousands of others also eligible for and needing services.
Indianhead/Lehigh elders needing HCBS services cannot count on receiving them in Florida unless they can pay for the services themselves. Many in Indianhead/Lehigh cannot do that.
Most elders in America, 77 percent, want to stay in their homes as they age and HCBS can help make that possible. So what is really happening in the realm of HCBS?
In the United States, almost half of elders will use some form of long-term services and support, including HCBS, before they die. In other words, there is a great demand for home-based, elder support services.
These services are provided by direct care workers who have several different titles but all do essentially the same work: certified nurse assistant (CNA), home health aide, personal assistant, etc. There are more than 1 million HCBS workers in the United States. Half are Black or Hispanic/Latino and the overwhelming majority are female. They are all underpaid. There are many employment vacancies and there is a great deal of turnover in the field.
In this environment, the family caregiver, if an elder is lucky enough to have one, becomes vitally important. About 2/3 of adults needing help with the activities of daily living receive help from an unpaid family member. It is estimated that there are more than 40 million family caregivers in the United States who contribute approximately $470 billion of economic value. In addition to providing services, many families pay for services for their elders. Among Hispanics, out-of-pocket care-giving costs account for 47% of household income with lower percentages for Blacks (34%), Asians (22%) and Whites (18%).
The reality is that the demand for LTSS/HCBS services is high, the cost of those services is high and the supply of those services is unreliable.
(All data from AARP Public Policy Institute LTSS Choices Initiative.)