The role of care managers within state systems is driven by the needs of the population(s) served, particular program goals the care manager works within, and what often can be a complex maze of programmatic, state, and federal requirements. Similar to care managers in other systems of care, the functions of care management within state systems typically include:
- engaging individuals seeking help to assess needs
- developing plans of care ensuring smooth transitions between care settings
- educating individuals about options
- advocating with other systems of care
- facilitating timely access to available services within the context of maximizing quality and cost effectiveness
Care managers working directly for or contracting with the state are considered a vital part of a state’s safety net. They also are responsible for determining eligibility for programs, allocating finite resources, monitoring services provided, following rules and regulations, and problem-solving a broad range of issues as the individuals needing services often have limited resources, health disparities, and complex health and psychosocial-related needs. Care managers are key to ensuring that individuals who have turned to the state for assistance are able to access the services they need, exercise choice and control of the services they receive, and achieve the individual’s and the state’s goals for the programs.
Care Management within Long Term Services and Supports
One of the fastest growing segments of care management within state systems is supporting individuals with disabilities and older adults who need assistance accessing Long Term Services and Supports (LTSS). This is due to the changing demographics of the nation, with a rapid increase in the number of individuals ages 65 and older as the Baby Boom generation ages, as well as the significant gains in life expectancy achieved in the past several decades. Given the role of states in operating care management systems for individuals in need of LTSS funded under Medicaid, the tremendous growth in state caseloads, and the growing impact LTSS has on state and federal budgets, this article will focus on LTSS care management administered by states.
LTSS is typically defined as a range of services and supports for individuals who need assistance with daily living tasks such as bathing, dressing, ambulation, transfers, toileting, medication assistance and administration, personal hygiene, and other health-related tasks. It also encompasses assistance with tasks such as housework, meal preparation, essential shopping, and transportation. Although individuals of all ages receive these services, including children and working adults, the need for LTSS is strongly correlated with advanced age. National estimates predict that 70 percent of people older than age 65 will need some form of LTSS in their lifetime.
The majority of individuals who need LTSS receive at least some assistance from their family and friends and may never need to access safety net services operated by state governments. However, having a family member provide care is not always a viable option or enough to meet the individual’s needs. When family is not available or when additional services are needed, people pay out of pocket for the care they need. However, LTSS are expensive and few people are able to afford such services for long periods of time. Once someone has spent down their savings, they often must turn to Medicaid to access the LTSS they need. Medicaid is the primary payer of LTSS in the United States and is funded as a partnership between federal and state governments. In this partnership eligibility determination, needs assessment and person-centered planning are expected duties of a care manager.
In 1981, the Social Security Act was amended to allow states to submit a waiver to the federal government to provide a broad array of home- and community-based services as an alternative to nursing facility care, a required service in Medicaid programs. Over the past four decades every state has developed federal authorities to provide Medicaid-funded LTSS outside of institutional settings.
This rebalancing of LTSS has yielded significant savings, while also providing many more options to individuals and families who are making decisions for where and how they want to receive care. Rebalancing away from expensive institutional care creates savings that can be reinvested to ensure the community-based infrastructure is able to meet the changing needs and preferences of individuals choosing to live outside of institutions. Without responsive and competent care managers, these accomplishments cannot be achieved. Care management skills, capacity, and expertise also has had to change over time as the complexity of the service delivery system and needs of those served evolves. Care managers serve as a nexus between individuals with functional needs due to disability or age and the services that they may not know they need or do not know are available.
What It Takes to Be a Care Manager
Excellent clinical and communication skills are core competencies care managers must master. Such skills ensure care managers can help clients identify what is important to them, and then focus on the preferences and goals of the person seeking services. They also must balance what is important to the individual with ensuring that issues of health and safety are discussed and addressed in plans of care. There may be instances where client choice could significantly jeopardize health and safety. Those issues need to be balanced, weighed, and solved to mitigate risk. This is necessary to achieve not only informed decision-making by the individual receiving services, but also because states and their contractors may carry liability associated with the professional involvement of care managers and those they are serving.
One of the most important aspects of LTSS care management is delivering a significant portion of assessment and service planning face-to-face with the individual receiving services in the environment in which they live. This helps to identify an individual’s strengths and limitations and how they present themselves in the context of the physical and emotional environment in which they operate daily. It helps the care manager to learn and understand the client’s life experience and realities of their present situation. This results in a better understanding of natural support systems and how they do or do not align with the individual’s goals.
‘The average person receiving LTSS in Washington State has been diagnosed or treated for five chronic conditions.'
The key to strong assessment and service planning is the ability to listen, gather information, identify whether there have been non-trivial changes in condition or goals, and to connect the dots across the facets of an assessment that covers medical, behavioral, functional, environmental, psychosocial issues, and more. Seeing individuals in their homes also can provide insight into barriers that may affect independence or quality of life. These may include things such as stairs that cannot be navigated in a wheelchair, potential environmental modifications, lack of running water necessary to bathe, or lack of food. Such discoveries inform services that may be needed to assist the individual to live in their setting of choice.
In addition to the important skills of options counseling, professional decision-making, communication, and compassion, the reality is there are many rules and regulations governing LTSS programs that require care managers to be skilled at documentation, detail-oriented, able to manage within prescribed timeframes, and navigate an increasing number of computer applications. The need to be present and meaningfully connect with those seeking services to develop a person-centered plan often rivals the mandate to work within timeframes set by policy.
States use a number of approaches to hire or contract care management services, including: hiring state employees, contracting with Area Agencies on Aging (AAAs) or other community-based organizations, or entering at-risk agreements with managed care entities who operate LTSS on the state’s behalf. In Washington, the state operates LTSS directly, using a combination of state employees and contracts with AAAs. For more than three decades, Washington has emphasized the importance of giving service recipients choice of where they receive services. As a result, more than 86 percent of clients are served outside of skilled nursing facilities. The overwhelming majority are served in their own homes.
Many states administer their federal authorities and/or specialize their care management based upon age and/or disability type. This is reflected in the almost 300 home- and community-based waivers states operate that often limit services to a group of people based upon age or disability. States also use state plan authorities, which cannot be limited based upon diagnosis, age, or geography. However, states may assign eligibility and care management of populations to particular state or contracted entities with specialized population-based expertise.
How a state decides to fund care management and the agency or administration operating the services also can influence the choices an individual has in who provides their care management services. States may specialize care management functions based upon setting, such as in-home, community residential, and nursing facility. Some care managers focus exclusively on transitions from institutional settings such as acute and psychiatric hospitals, nursing facilities, and jails. In these function-based specialized models, an individual may be transitioned to a different agency or care manager after transition from an institutional setting. This agency or person may provide on-going eligibility determination, assessment, service planning, and care management.
State of Washington LTSS Methodology
Washington’s LTSS is provided under fee-for-service contracts the state and local AAAs have with providers. Individual care managers are assigned to work in nursing facilities to ensure that individuals know they are eligible to receive services in community-based settings and to facilitate eligibility and care transitions. Almost 4,000 individuals receiving Medicaid who wish to relocate are supported to transition from nursing homes each year. A legislative council forecasts and approves caseload growth and per capita expenditures, and then projects entitlement caseloads used by the legislature in developing budget appropriations.
Through this process the State of Washington has been able to facilitate moving funding from nursing home budgets to community-based settings to support individuals’ ability to receive services in the settings of their choice. State employees conduct care management for initial LTSS eligibility, institutional transitions, and individuals receiving services in residential settings. The state’s thirteen AAAs manage the care for individuals who receive services in their own home. All LTSS services, including the Older Americans Act state-funded programs and Medicaid state plan and waivers, are administered in a single state agency. This is a key factor in the ability to innovate, test, and implement new strategies that result in maximizing choice and innovation.
Changes in LTSS over time have an impact on care management:
In the beginning of Washington State’s work to offer choice outside of skilled nursing facilities, both the programs and the population served looked vastly different than they do today. The work of care managers in many ways was easier then. What were only two Medicaid authorities with a small number of services is now a combination of seven Medicaid authorities, each with unique sets of services, providers, and different levels of financial and functional eligibility. An assessment that consisted of two pages completed by pen and paper in the 1990s was primarily focused on assistance needed with daily living tasks to determine how much personal care assistance would be authorized. Today, care managers use an online assessment embedded with complex algorithms via a laptop computer in the home or institutional setting.
The service plan includes a broad range of services and supports with a broader focus than just daily living tasks. These differences are driven by changes in the populations accessing LTSS, increases in the acuity of people served outside of institutions, and a more rigorous set of rules and regulations care managers must adhere to at federal and state levels.
Changes in clients served:
Today, the average person receiving LTSS in Washington State has been diagnosed or treated for five chronic conditions and has taken seven to eight therapy class medications in the previous 12 months. For example:
- 1 in 7.5 have a severe and persistent mental health diagnosis
- 1 in 10 have a substance use disorder
- 1 in 4 have dementia or cognitive impairment
- 2 in 5 have diabetes
- 2 in 5 experience depression
The complexity of recipients has increased the need for care managers to learn about chronic disease management and when to use nursing resources to inform assessment and service planning. It also has resulted in the need to learn how to engage individuals to change behaviors to improve health and wellness. As a system, new services have been developed to address depression, behavior supports, training to assist individuals to manage new diagnoses and impacts on functioning, and how to support individuals outside of institutional settings who need assistance with tasks that are part of healthcare professionals’ scope of practice.
The average age of individuals served has decreased as the numbers of people with disabilities such as traumatic brain injuries, intellectual disabilities, and behavioral health have increased as a proportion of overall people served. Today, 56 percent of individuals served in Washington (not including individuals with intellectual and developmental disabilities) are ages 65 and older. Seventeen percent are between the ages of 18 and 44, and 27 percent are between the ages of 45 and 64. As a result of this shift to working with a larger proportion of individuals who are working-age, there is a greater need for care managers to gain skills in topics such as employment, peer supports, housing, and behavior supports.
The number of people of color, ethnic minorities, and languages represented in the population of individuals receiving LTSS also has grown. In the early 2000s, one in five Washingtonians served was a minority and in 2019 that number was one in three. Today, there are 74 languages spoken by individuals receiving LTSS in Washington State. This has made it necessary to ensure that care managers are recruited who represent the populations served.
The goal is to provide culturally relevant services and to ensure communication is not a barrier to assisting those in need. States have implemented methods to expand linguistic capability in their care management systems. This has included the use of interpreters, but also the creation of certification processes for care managers to demonstrate proficiency of languages spoken other than English. Pay differentials are used as a way to recruit and retain care managers that speak and translate the languages spoken by populations served. Another strategy is to contract with organizations embedded in these local ethnic communities to increase cultural and linguistic access to services. More recently states have been working on diversity, equity, inclusion, and health disparities and are taking steps to ensure their staff and contractors more closely reflect the populations served.
Supporting individuals to experience smooth transitions as they move from one care setting to another has always been an integral function of an LTSS care manager. However, changes in the healthcare delivery system, reimbursement methodologies, and downsizing of institutional settings have resulted in shorter lengths of stays in hospitals and nursing home rehabilitative centers. Such shorter stays have created new gaps in service that must be addressed. There is increased pressure on LTSS care managers and community-based providers to ensure timely transitions. This also increases the need for more coordination with healthcare and LTSS providers to ensure medical needs are addressed and follow-up appointments are met following the transition.
‘Effective care managers establish rapport and trust and, as a result, they are often the first person an individual will call to problem-solve issues.’
Increasingly, individuals prefer to return directly home with services rather than to receive temporary rehabilitative stays in nursing homes. States have developed statutes, providers, and reimbursement mechanisms in response to these changes. However, these changes add complexity and generate more coordination of care for care managers. States have tested and implemented evidence-based care transitions models in their care management systems to reduce re-hospitalizations and improve health outcomes for LTSS recipients.
Other practices and evidence-based models frequently used within a long-term services care management context are person-centered thinking practices and Motivational Interviewing (MI). Person-centered thinking was first practiced with individuals with developmental and intellectual disabilities and has evolved over time to be used across all populations served in Medicaid LTSS (O’Brien and O’Brien, 2000).
Technical assistance and training opportunities have been available through the Administration for Community Living, the Centers for Medicare & Medicaid Services, national technical assistance centers, and expert consultants. Federal statutes and guidelines require person-centered approaches to service planning and the delivery of services. Engaging individuals in what is important to them is key for individuals to make behavior changes that can help them achieve goals of improved health and independence. MI is an evidence-based practice that has made a difference for individuals wanting to transition from institutional settings and to improve health and reach self-identified goals. The purpose of MI training is to “strengthen and support personal motivation for and commitment to a detailed goal by provoking and investigating the person’s own motives for change within an atmosphere of acceptance and compassion” (Miller and Rollnick, 2013, p. 29). Using MI has become a “go-to” tool in working with clients with complex needs.
The role of a state care manager has gotten more complex as the environment, federal authorities, regulation, population served, and provider network has become more diverse. They are tasked with a broad role, which includes helping individuals to navigate a complex number of options and choices. Effective care managers establish rapport and trust and, as a result, they are often the first person an individual will call to problem-solve a broad array of issues such as housing, nutrition, finding medical providers, services provision, and psychosocial issues with the family.
States and their contractors strive to ensure care managers have the tools needed to complete their job. In reality, the work is multifaceted and services rarely follow a linear path. Settings and providers chosen by individuals do not always work out, caregivers quit, and physical and cognitive functioning change over time, as do natural support systems. When those things occur, care managers regroup, work with the individual to achieve his or her goals, and establish a new or revised plan.
COVID-19 has had dramatic effects on older adults and individuals with underlying chronic conditions. Recipients of LTSS, particularly those living in congregate care settings, have experienced a disproportionate prevalence of the disease, as well as deaths. It also has impacted state-operated LTSS and care management systems in ways that are likely to be experienced long-term. States have sought significant flexibilities from the federal government to protect recipients and providers from exposure and spread of COVID-19. They also have used these flexibilities to streamline eligibility determination, ensure that individuals in need of LTSS are able to access services in new ways, and to assist clients, families, and provider networks to respond to changing public health guidance as more has become known about the disease.
COVID-19 also is significantly impacting state budgets. Many states have implemented or are in the planning stages of budget cuts. These include actions such as staff reductions or furloughs, hiring freezes, and reduced or frozen salaries. Cuts in services may also be implemented as a way of reducing expenditures. Balancing expectations and requirements with available funding to support care management is always a constant struggle for states. Increases in the number of clients each care manager supports reduces the quality and quantity of service provided to recipients.
Much has changed over the forty-five years since LTSS could be funded by Medicaid outside of institutional settings. State systems of care management and LTSS will continue to evolve as the needs and preferences of individuals served in these programs changes. One thing that will not change is that individuals want care managers and care management systems to respect and embrace their values: to exercise autonomy and control over their lives; to have robust person-centered options from which to choose; and to access culturally competent service.
Sonya Sanders, MA, is a regional administrator in the Home and Community Services Division at the Aging and Long-Term Support Administration in Seattle, Washington. She can be contacted at Sonya.sanders@dshs.wa.gov. Bea Rector, MPA, is director of the Home and Community Services Division at the Aging and Long Term Support Administration in Olympia, Washington. She can be contacted at Bea.rector@dshs.wa.gov.
References
Miller, W. R., and Rollnick, S. 2013. Motivational Interviewing (3rd ed.). New York: The Guilford Press.
National Association of State Directors of Developmental Disabilities Services. 2020. “The Origins of Person-Centered Planning.” Retrieved September 6, 2020.
O'Brien, C. L., and O'Brien, J. 2000. “The Origins of Person-centered Planning: A Community of Practice Perspective. Retrieved March 4, 2021.
