Options for Long-Term Eldercare - dummies

By Carol Levine, AARP

Your options for the future are expanding — and that’s a good thing. There are many more alternatives for living at home or in the community, where the clear majority of people want to be. Technology is making it possible to have your healthcare monitored at home and to keep you in touch with family and friends. There is a greater awareness of the importance of a stimulating environment and social connections for mental and physical health.

Skilled nursing facilities are changing too, as they move toward a more person-centered focus and introduce elements of stimulating activity and participation for their long-stay residents.

Why changes are being made in eldercare and aging options

There are several reasons for these changes in the landscape.

Money is a factor

One reason is economic: Medicaid — the federal-state program for low-income people — is the major payer of nursing homes and community-based services, and policymakers want to keep those costs in check. According to a 2013 report from the Scan Foundation, in fiscal year 2010 Medicaid paid 62.2 percent of long-term care expenditures. Only 21.9 percent was paid for out-of-pocket; 11.6 percent by other private sources, including long-term care insurance; and 4.4 percent by other public sources, such as the U.S. Department of Veteran Affairs (VA). Medicaid’s long-term care expenditures are expected to increase from $207.9 billion in 2010 to $346 billion in 2040.

To keep this spending in check, Medicaid has tried to move away from what has been called an “institutional bias,” which means that the bulk of funding goes toward skilled nursing facilities, putting it instead toward more community-based care. In 1995, for example, 80 percent of Medicaid spending on long-term care was for institutional care; by 2011 that percentage had dropped to 55 percent. Community-based care is typically cheaper than skilled nursing facility care, which makes it attractive to Medicaid programs faced with escalating costs, and it is also preferred by individuals.

While this should be a win-win situation, it has proven difficult to implement fully, partly because of the need for more housing options and direct-care workers to provide community care. Another reason is that federal rules require state Medicaid programs to provide institutional care and home health services, while coverage of home- and community-based services is optional. States differ in what they cover under this optional category.

Legal reasons

The federal Americans with Disabilities Act (ADA) is another reason for changes. In 1999, the U.S. Supreme Court held in Olmstead v. L.C. that unjustified segregation of persons with disabilities in nursing homes constitutes discrimination in violation of Title II of the ADA. The Court held that public programs such as Medicaid must offer community-based services to people with disabilities when such services are appropriate, the affected person doesn’t oppose community-based treatment, and community-based services can be reasonably accommodated, considering the resources available and the needs of others who are receiving disability services from the entity.

In its ruling, the Supreme Court explained that “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life.” Furthermore, “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.” Although the case that reached the Supreme Court was about two young people with mental disabilities, the Olmstead decision applies to people of all ages and all different kinds of disabilities. (Many states have yet to implement fully a plan for moving eligible people from institutions to the community.)

While the Olmstead ruling is limited to a defined group of nursing-home residents, it acts as an incentive for federal and state programs to develop appropriate community-based alternatives to institutions, which may benefit a larger group of people. It also reaffirms the importance of consumer choice in long-term care.

People want change

In addition to economic incentives and legal rulings, consumer demand has also played a part in moving away from old forms of long-term care — think traditional skilled nursing homes — to more home-like and person-centered settings. As people live longer — often into their 90s and beyond — the length of time a person needs various forms of care has increased and has required accommodation to various levels of need.

Although the trends of home-like and person-centered settings are positive, implementation across the country is inconsistent and variable. At best, the system is a patchwork quilt of settings and services, some strong and some weak, with different eligibility requirements and payment sources. But compared to a few decades ago, the quilt itself is bigger because people have demanded better options.

Keep up with insider language for long-term services and supports

Every industry and service enterprise has its own language. As with long-term care and long-term services and supports, the terms are constantly evolving. Those who are fluent in this language sometimes forget that newcomers to the field don’t understand their acronyms, shorthand, and jargon. Throughout this book I explain terms as they come up, and I include a glossary in Appendix A. Just to get started, however, here are a few of the terms that you may encounter. As you move forward, don’t hesitate to ask when someone uses a term you don’t understand or seems to be using a term in a way that is unfamiliar:

  • Activities of daily living (ADLs): These activities are ordinary tasks like bathing, eating, getting dressed, and going to the bathroom that most people don’t think twice about but that become difficult for a person who is ill or frail or has a disability. Assistance with ADLs can range from lending a hand, literally or figuratively, to heavy lifting and taking total responsibility for carrying out the task. (Also see IADLs later in this list.) The number of ADLs is often used as a benchmark for eligibility for long-term care insurance benefits or nursing-home or home-based services.
  • Acute care: This type of care is provided in hospitals to treat an illness or accident that needs immediate attention. Acute care is distinguished from chronic care, which treats illness that lasts for a long time; post-acute care, which includes care at home or in a skilled nursing facility after a hospitalization; and long-term care, which may involve episodes of both acute care and chronic care. Coordinating care among acute care and chronic and long-term care is often a job that falls to family members or to the person needing the care.
  • Assisted-living facilities: Even though most people have heard of assisted living, there is no standard definition. States vary in what they call these facilities and how they regulate them, if they do at all. Generally, however, assisted-living facilities are group settings for people who need assistance in ADLs or IADLs but do not require the medical care typically provided in skilled nursing facilities.
  • Instrumental activities of daily living (IADLs): These activities are the common household or management tasks such as paying bills, organizing transportation, shopping, and doing laundry. They often go hand in hand with ADLs because the person who needs assistance with physical care may not be able to drive or shop alone. Even using the phone with all the complicated prompts that you encounter today may be difficult for someone with, for example, severe arthritis. But needing assistance with ADLs or IADLs is not necessarily associated with cognitive decline.
  • Skilled nursing facility (SNF): These facilities provide skilled care that can only be provided by a nurse, such as injections, and rehabilitation services, such as physical therapy, and are certified to meet federal and state standards.
  • Transfer: Here’s a term that has several meanings. In long-term care jargon, it usually means moving a person from bed to chair or the reverse. Someone who is a two-person transfer requires two aides to do the job. This may be because the person is obese or paralyzed, or has another condition that makes it unsafe for both the person and the helper to manage alone. The second meaning of transfer refers to moving a person from one setting to another, such as from an assisted-living facility to a hospital emergency department. This is often called a transition.

A good place to look up terms that relate to Medicaid and financial issues is the glossary. Another resource is the United Hospital Fund’s Next Step in Care “Terms and Definitions.”. For medical terms, consult a medical dictionary or the resources, including videos, from the National Institutes of Health Medline Plus.

You will find that different people interpret terms differently and that agencies and insurance companies often have their own interpretations of what counts as, for example, medically necessary, which is often the trigger for benefits. To keep everything straight, I suggest writing down the information you’re given when it relates to eligibility or another aspect of services, along with the name, title, and contact information of the person who gave you the information. And if you don’t like the definition you’re given by someone, you may be able to get a more favorable interpretation from a supervisor after you’ve explained the situation.