Long-Term Care Options and Quality Issues (Chapter 9 of Advising the Older Client or Client with a Disability)
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Chapter 9: Long-Term Care Options and Quality Issues
Alison E. Hirschel, Michigan Elder Justice Initiative

Care in the Home
Non–Nursing Home Living Options:Assisted Living, Adult Foster Care Homes, Homes for the Aged, andContinuing Care Retirement Communities
Hospice Services
Nursing Homes
Selecting a Nursing Home
Typical Problems Applicants Face
Nursing Home Contracts
Residents’ Rights
Handling Problems and Abuses in Long-Term Care Services

I.   Overview

§9.1   This chapter outlines the most common types of long-term care options available to older adults and persons with disabilities and explains how to evaluate each option in view of the client’s current and anticipated needs and resources. It also discusses how to respond to typical issues that may arise and how to seek and finance high-quality and appropriate services and supports.

With the aging of the baby boomer population and increased life expectancy, the percentage of older adults is rising rapidly. U.S. Census Bureau, Facts for Features—Older Americans Month: May 2011 (Mar 23, 2011). By 2050, 20 percent of the nation’s population will be 65 or older. Id. Not surprisingly, increased age correlates with an increased dependence on long-term care. According to a U.S. Department of Health and Human Services (HHS) study, referenced at the LongTermCare.gov website, 70 percent of people turning age 65 can expect to use some form of long-term care during their lifetime. Of course, long-term care is not the exclusive domain of older adults. According to the Kaiser Family Foundation, in 2000, 36 percent of people with long-term care needs and 9 percent of all nursing home residents were under the age of 65. See also Georgetown University Long-Term Care Financing Project, Who Needs Long-Term Care? Fact Sheet, May 2003 (reporting that 37 percent of all long-term care consumers are under age 65).

The devastating impact of diseases such as arthritis, hypertension, heart conditions, diabetes, Parkinson’s disease, and other debilitating conditions is only beginning to be appreciated by those planning, providing, or paying for long-term care. And many younger long-term care consumers may require long-term care planning and services—sometimes for decades—as the result of developmental disabilities, traumatic brain injuries and other accidents, or chronic conditions.

Despite the increase in the number of people requiring long-term care, data released by the Centers for Disease Control and Prevention, National Center for Health Statistics, National Nursing Home Survey, indicate that the occupancy rate of the nation’s nursing homes is actually declining. See CMS, Introduction to the CMS Nursing Home Data Compendium (2013). Adults who are physically or cognitively impaired are using a much wider range of long-term care service options like adult foster care homes, homes for the aged, and unlicensed assisted living facilities that may be both more appealing and more affordable than a nursing facility. Because of changes in public and private health insurance coverage, advances in medical technology, changing attitudes among consumers and service providers, and expanded opportunities for home and community-based care, health care at home has become a viable option for many adults with chronic illnesses or complex conditions who might in the past have been forced to seek nursing home care. Indeed, many advocates in the disability community assert that every individual can be cared for in the community, no matter how complex their needs, if they are offered proper services and supports.

And for the first time, in 2017 more than half the states in the country reported spending more than half of their Medicaid long-term care budgets on home- and community-based options instead of nursing facility care. The Henry J. Kaiser Family Foundation, Medicaid Pocket Primer. Sadly, Michigan has not achieved that goal and ranks near the bottom of the country in the percentage of funding it spends on home- and community-based services compared to nursing facility care. The State of Michigan’s Aging and Adult Services Agency website contains a variety of information about various long-term care options. Both because of clients’ frequent strong preference to remain in the community and because of the complex eligibility and financial issues involved in choosing a long-term care setting, attorneys advising older clients and clients with a disability must be prepared to discuss the whole range of options for addressing clients’ long-term care needs.

In four regions of the state, MI Health Link, a long-term care, health, and behavioral health demonstration project, is available for clients who are eligible for both Medicaid and Medicare. The demonstration project, which is a state option under the Patient Protection and Affordable Care Act, is being offered by health plans (integrated care organizations [ICOs]) and prepaid inpatient health plans (PIHPs) in Macomb County, Wayne County, eight counties in southwest Michigan (Barry, Berrien, Branch, Calhoun, Cass, Kalamazoo, St. Joseph, and Van Buren), and all of the Upper Peninsula. Except in the Upper Peninsula, where the Upper Peninsula Health Plan is the only ICO, beneficiaries will have a choice of plans.

The vast majority of the more than 100,000 eligible individuals in the demonstration regions were automatically (passively) enrolled in MI Health Link unless the beneficiary or an authorized person on the beneficiary’s behalf called Michigan ENROLLS, the enrollment broker, to express his or her desire to opt out of or disenroll from the program. Passive enrollment began in early 2015. A second round of passive enrollments began on June 1, 2016 and continues on the first of each month as the program moves forward. Beneficiaries in a few categories—including those in employer- or union-sponsored health plans, MI Choice, or a Program of All-Inclusive Care for the Elderly (PACE) and Native Americans—will not be automatically enrolled but can choose to participate if they wish. However, participants in MI Choice who are hospitalized or enter a nursing home temporarily could be automatically enrolled in MI Choice during that period. See MI Health Link, MI Choice Participants and MI Health Link Q&A. Individuals who were passively enrolled in the past and opted out of MI Health Link should not be included in the upcoming round of passive enrollments or any other future passive enrollment.

MI Health Link is not available to individuals who are Medicaid-deductible (spend-down) beneficiaries. Previously, MI Health Link participants who wished to elect hospice care had to disenroll from MI Health Link, but that issue was resolved in 2016 so that participants may remain in the demonstration project and also receive hospice care.

Individuals who are subject to automatic enrollment but choose to opt out may continue receiving health care services funded by traditional Medicaid and Medicare. However, some beneficiaries who were enrolled in Medicaid-managed plans before the MI Health Link rollout were advised that their prior plan is no longer available. In that case, the beneficiary was switched to traditional Medicaid. It is very important to note that beneficiaries can enroll, disenroll, or switch plans every month, as their needs or preferences change. Beneficiaries or their authorized representatives can call Michigan ENROLLS to enroll, disenroll, or switch plans. Information about navigating the enrollment and disenrollment process is available at the state’s MI Health Link website in a document entitled Calling Michigan ENROLLS and in An Advocate’s Guide to the MI Health Link Program.

MI Health Link offers acute care, primary care, pharmacy services, behavioral health services, dental care, and long-term supports and services. It is designed to integrate all Medicare and Medicaid benefits, rules, and payments into a single, coordinated health system. Each participant in MI Health Link has a care coordinator who is supposed to use person-centered planning to ensure the program meets all the beneficiaries’ needs and preferences across the different health care and service systems. It also offers other benefits, such as no copays on prescription drugs, a 24-hour nurse line, likely better access to dental care, and other advantages. While it was hoped that MI Health Link would offer better transportation options, there have been difficulties and beneficiaries have experienced cancellations and missed rides.

The state’s goals for the program are laudable: improved coordination of care, person-centered and holistic provision of supports and services, increased access to home and community-based services, enhanced quality, simplified billing, and easier access to electronic medical records for both providers and beneficiaries. Advocates have been supportive of the goals of the program but concerned about the disruption and confusion the new program caused and the overwhelming complexity of this ambitious and innovative undertaking.

The program was implemented in several phases. In the Upper Peninsula and southwest Michigan, dually eligible beneficiaries began receiving information about the program in early 2015, and those who voluntarily enrolled could start receiving services on March 1, 2015. Individuals who were passively enrolled could have started receiving services on May 1. In Wayne and Macomb counties, beneficiaries began receiving information about the program in the spring of 2015, and services were offered to voluntary enrollees in May 2015. Passive enrollments were effective in Wayne and Macomb beginning in July.

To participate in MI Health Link, beneficiaries had to sever relationships with other types of providers, such as primary care doctors or specialists who are not in their ICO’s provider network. In those cases, the ICOs are required to ensure continuity of care for a period of time and to help smooth the transition to new providers in the ICO’s provider network. Beneficiaries who wish to retain their current providers who are not part of a provider network will likely prefer to opt out of MI Health Link.

There are some special considerations, policies, and issues for individuals who require long-term care and choose to participate in (or fail to opt out of or disenroll from) MI Health Link. Current participants in MI Choice or PACE who choose to leave those programs and enroll instead in MI Health Link (as noted above, they will not be automatically enrolled) may have to go on waiting lists if they decide to re-enroll in PACE or MI Choice in the future. Moreover, while the services offered in MI Health Link’s waiver are very similar to the services individuals receive in MI Choice, there is no guarantee that the care plan or services offered by the ICO will be identical to the one offered by the waiver agent. Some beneficiaries have found services in the MI Health Link waiver to be less generous than some of those available by some MI Choice waiver programs. There are also some differences in covered services. For example, the MI Health Link waiver, unlike MI Choice, restricts private-duty nursing to 16 hours per day. See Comparison of Home and Community Based Long Term Care Programs for a comparison of services available under the programs. Moreover, personal care hours are a state plan service in MI Health Link and are determined according to the assessment tool used in the Home Help program, not the tool used in MI Choice, often resulting in fewer hours of service.

Nursing home residents also can participate in MI Health Link. While some nursing facility providers have scoffed at the need for additional care coordination in a nursing home and complained about automatic enrollment of facility residents, many hoped that individuals who have received poor quality care, a lack of access to specialists or care coordination, and difficulty returning to the community may find access to an ICO care coordinator to be beneficial. It is not clear this goal has often been realized or that care coordinators are able to or interested in tangling with nursing home staff to achieve better services or outcomes for beneficiaries.

Beneficiaries who already reside in nursing homes when they are enrolled in MI Health Link may participate in MI Health Link and remain in their facilities even if the facility is not participating in the ICO’s provider network. Indeed, many residents of facilities that are not part of the MI Health Link provider network will be automatically enrolled and will remain in the same facilities. Individuals who seek nursing home placement after enrollment in MI Health Link will have to either choose an in-network provider or disenroll from MI Health Link so they can be admitted to an out-of-network facility. There are a few exceptions. For example, MI Health Link beneficiaries who have spouses or family members already residing in out-of-network facilities or who live in a retirement community with an out-of-network nursing facility may enter those facilities and remain in MI Health Link.

Home Help participants also need assistance when they are enrolled in MI Health Link if they want to continue using the same personal care providers. Each provider must be enrolled as a provider in the ICO in which the beneficiary is enrolled, a task that may seem daunting to nonagency providers. Providers can call the Michigan Department of Health and Human Services (DHHS) provider support line at 800-979-4662 with questions about how to proceed. DHHS also has created a simple Q&A document that should answer most of the providers’ questions. See MI Health Link, MI Choice Participants and MI Health Link Q&A. The ICOs will conduct their own assessments of beneficiaries to determine the hours of personal care services available to the beneficiary.

There has been a mix of experiences thus far. Many beneficiaries like that there are no copays in the program. Some beneficiaries have had wonderful experiences with their health plans and their care coordinators and have seen their lives improve dramatically after enrolling in MI Health Link. Many have praised the dedication and hard work of their care coordinators in helping to secure necessary services. Other beneficiaries have had great difficulty simply reaching their care coordinators, and advocates have been concerned about the size of many care coordinators’ caseloads. Some beneficiaries have been enrolled in the waiver and receive personal care services, home delivered meals, durable medical equipment, and home modifications, while other beneficiaries have had to fight for these services with ICOs that have had little experience with long-term care before MI Health Link. There seems to be considerable variation among health plans. Some are very person centered and innovative. Others seem more bureaucratic and generate more complaints. Individuals in the lower peninsula who are dissatisfied with any aspect of their MI Health Link may wish to switch to a different MI Health Link plan that is available in the beneficiary’s region or disenroll altogether and return to traditional Medicaid and Medicare.

Information on MI Health Link and a resources toolkit for providers containing helpful documents are available at the DHHS MI Health Link website. In addition, the MI Health Link Ombudsman was launched in December 2015 to assist beneficiaries and provide systemic advocacy to improve the program. This service is offered by the Michigan Elder Justice Initiative (MEJI) and its partners at the Counsel and Advocacy Law Line (CALL). MEJI has also created and continues to update frequently an online manual, An Advocate’s Guide to the MI Health Link Program, a detailed resource with many useful links. To contact the MI Health Link Ombudsman, call 888-746-6456 between 8 a.m. and 5 p.m. Monday–Friday, e-mail help@mhlo.org, or visit its website. Moreover, the Michigan Medicare/Medicaid Assistance Program (MMAP) helps beneficiaries understand what the various plans offer and answers basic questions about the program. MMAP can be reached at 800-803-7174. Questions about enrollment and disenrollment can be directed to the enrollment broker, Michigan ENROLLS. To reach Michigan ENROLLS, call 800-975-7630. General comments or questions can be sent to the MI Health Link mail box at IntegratedCare@michigan.gov; and suggestions, feedback, and comments on the program can be submitted to MSA-MHL-Feedback@michigan.gov.

II.   Understanding Care Needs

A. Activities of Daily Living and Instrumental Activities of Daily Living

1. In General

§9.2   Understanding the long-term care needs of individuals and the options designed to serve them requires familiarity with the concepts of activities of daily living (ADLs) and instrumental activities of daily living (IADLs). ADLs include activities such as toileting, eating, bathing, dressing, and transferring (i.e., from bed to chair or chair to toilet). IADLs include activities necessary to live independently in the community, such as taking medications or grocery shopping. Assessing individuals’ ability to perform ADLs and IADLs is a way to quantify the needs, abilities, strengths, and care requirements of people with disabilities. Generally, health and social services providers assess a client’s abilities on a sliding scale depending on whether the client can perform the task independently, with cuing or supervision, with some assistance, or is totally dependent on caregivers to perform the task.

To be effective, a practitioner must be conversant with these issues and knowledgeable about his or her client’s true needs and abilities. ADL and IADL assessments and scores are used by clinicians and providers to develop care plans and by public and private insurers and payers to determine eligibility and make coverage decisions. For example, a claim for benefits under a long-term care insurance policy may require the inability to perform two or more ADLs, based on a doctor’s assessment. Furthermore, DHHS uses the functional assessments and ADL/IADL definitions set forth in the DHHS Adult Services Manual (ASM) to evaluate applicants for purposes of the Adult Home Help Services program described in §9.17. An individual who can independently perform all ADLs and IADLs will likely be ineligible for Home Help services and many other publicly funded long-term care services.

During assessments, clients may minimize the extent of their needs because they are embarrassed, in denial, or cognitively impaired. Advocates must counsel clients to be realistic and straightforward about their abilities and limitations. If the client is not a reliable reporter, the advocate should ensure that another person is present when completing the assessment so that the assessor obtains a true picture of the client.

2. Activities of Daily Living Versus Instrumental Activities of Daily Living

§9.3   A client’s inability to perform either ADLs or IADLs can result in the need for long-term care, the loss of independence, and declining quality of life and health. While it is obvious that a client’s health will be impaired by an inability to bathe or eat, failure to obtain assistance with IADLS can also have an extremely deleterious effect on a client’s well-being and health status. For example, an inability to shop for food can lead to malnutrition; an inability to perform household cleaning and chores can put clients at risk of eviction and can result in homes that range from cluttered and dirty to truly dangerous; and an inability to manage money may put a client in such peril that others step in to seek placement of the client in an institution. However, IADLs are generally not sufficiently related to medical or nursing services to qualify for coverage by Medicare, Medicaid, or long-term care insurance. Many adults are forced to rely on family or other informal caregivers or community groups to perform these functions but may be victimized by those who purport to assist them. See chapter 14 for a discussion of how to recognize and prevent financial abuse of elders and people with disabilities.

Many housing options offer not only living space but also amenity packages, including personal care services that address ADL needs; housecleaning, laundry services, transportation, and other options that address IADL issues; and other services for additional fees. As noted in §§9.83–9.90, clients should examine admissions contracts carefully, inquire energetically to see which services are covered in the monthly rental or fees, ask how much each additional service will cost, and ascertain how much notice they will be given before the fee is increased and who determines whether a client needs an à la carte service or is no longer suitable for the facility.

B. Public Policy Perspectives

§9.4   Many Americans mistakenly believe that Medicare covers most beneficiaries’ long-term care needs. There is widespread confusion regarding the respective roles of Medicare and Medicaid, the nation’s two largest health care payers. Medicaid is often regarded as a program primarily directed at low-income women and children, but that image is at odds with reality. Although 75 percent of Medicaid enrollees are children and their parents, 70 percent of spending for benefits goes toward care for the program’s enrollees who are older adults or people with disabilities. Statement of Donald B. Marron, Acting Director, Congressional Budget Office, before the U.S. Senate Special Committee on Aging, Testimony on Medicaid Spending Growth and Options for Controlling Costs (July 13, 2006). Many of these individuals were not indigent until they depleted their savings paying for health and long-term care. Thus, in the area of long-term care, Medicaid serves as a substantial safety net for the middle class as well as for the poor. Elder law attorneys and attorneys for people with disabilities should be aware that any reduction in Medicaid funding or change in Medicaid eligibility criteria may have a direct impact on clients who need long-term and other health care; this is a particular concern at a time when the administration is proposing very significant Medicaid cuts. Similarly, substantial increases in funding for Medicaid may mean expanded funding for home and community-based care and other improvements in benefits and services available to clients.


1 Portions of this chapter have been adapted from a previous chapter written by Hollis Turnham.

Forms and Exhibits

Form 9.01 Checklist for Homemaker and Home Chore Services
Form 9.02 Checklist for Home Health Agency Services
Form 9.03 Checklist for Assisted Living and Other Care Homes
Form 9.04 Checklist for a Continuing Care Retirement Community
Form 9.05 Assisted Living Disclosure Form
Form 9.06 Checklist for Hospice Services
Exhibit 9.01 Medical Level of Care Determination Exception Process
Exhibit 9.02 Residents' Rights, 42 USC 1396r(c)