Discussion Board 2 Long Term Care

Serving Low-Income Seniors Where They Live: Medicaid’s Role in Providing Community-Based Long-Term Services and Supports

Rachel Garfield, Katherine Young, MaryBeth Musumeci, Erica L. Reaves, Kaiser Family Foundation

Judy Kasper, Johns Hopkins Bloomberg School of Public Health

Seniors managing chronic health conditions or experiencing an age-related decline in physical or cognitive

functioning may need long-term services and supports (LTSS) to complete daily self-care activities (such as

eating, bathing or dressing) or household activities (such as preparing meals or doing laundry). LTSS include a

range of services, including adult day health care programs, home health aide services, personal care services,

and case management services, among others.1 LTSS needs may be met through both paid services and unpaid

services provided by friends or family members. While some people who need LTSS choose or require care

based in nursing facilities, most people with LTSS needs live in the community.

Medicare is the primary source of health insurance for nearly all seniors, but the program does not cover LTSS,

and few Medicare beneficiaries have private insurance that covers these services. For some low-income

Medicare beneficiaries (called “dual eligible beneficiaries”), Medicaid fills this gap by providing wraparound

coverage for a range of services, including LTSS. Helping these individuals remain in the community rather

than reside in a nursing facility is a goal of both beneficiaries and states, in part due to the Americans with

Disabilities Act’s community integration mandate.2 Understanding the community-based LTSS population

served by Medicaid is important for designing effective care delivery systems, particularly as states are

increasingly developing new systems of integrated and managed care for this population, and because

Medicaid is the nation’s primary payer for LTSS.3

In addition, other low-income seniors may have LTSS needs but may not meet Medicaid eligibility criteria or be

enrolled in the program. Some Medicaid waiver programs that provide home and community-based LTSS have

waiting lists for coverage.4 Since many of these people may become eligible for Medicaid should they ever need

institutional-based LTSS, it is important to understand the needs and characteristics of this population as well

as that already served by Medicaid.

To better understand the low-income population with LTSS needs, including those covered by Medicaid and

those who are not, this issue brief examines the need for LTSS among seniors who live in the community5 and

need LTSS. We use the 2011 National Health and Aging Trends Study (NHATS) to examine rates of need for

LTSS and detail the characteristics of seniors who need these services. Throughout the brief, we compare dual

eligible beneficiaries to low-income seniors without Medicaid. We also examine a third group, higher income

seniors without Medicaid, to understand the role of income. Because LTSS needs increase with age, we also

Serving Low-Income Seniors Where They Live: Medicaid's Role in Providing Community-Based Long-Term Services and

Supports 2

examine differences by age. A full description of the NHATS data and the analytical approach are included in

the methods section at the end of this issue brief.

LTSS needs are relatively common among seniors living in the community. Overall, 46 percent of seniors in the

community report having any type of LTSS need (data not shown). LTSS needs fall into two major categories:

self-care needs and household activity needs.

Sometimes called “activities of daily living,” self-care needs (e.g., bathing, dressing, or eating) are those

considered essential to daily functioning. The number and extent of such needs are used as the basis to

determine Medicaid eligibility for LTSS. More than a third (36%) of seniors in the community have a self-care

or mobility need (Figure 1). With the exception of toileting and eating (which are less common), different types

of self-care/mobility needs (bathing, dressing, going outside, getting around inside, and getting out of bed) are

about equally prevalent. While Medicaid eligibility standards may require that an individual have several self-

care needs, even having one self-care need could be incapacitating if that need is unmet.

Household activity needs (e.g., preparing meals or managing medication) are sometimes called “instrumental

activities of daily living.” Household activity needs are also common, with a third (33%) of seniors in the

community having such a need (Figure 2). Within household activity needs, different types of needs (help with

meal preparation, laundry, paying bills, and medication management) were about equally prevalent, with the

exception of shopping for groceries or personal items, which was more common. While not as essential to

functioning as self-care needs, household activity needs are an important measure of a person’s ability to live

independently in the community.

Figure 1

7%

9%

15%

17%

18%

18%

19%

36%

Eating

Toileting

Bathing

Dressing

Going outside

Getting around inside

Getting out of bed

Any Self-Care Need

Share of Community-Based Seniors with a Self-Care or Mobility Need

Share who need help with:

SOURCE: KCMU analysis of 2011 NHATS data.

Figure 2

14%

15%

15%

16%

22%

33%

Rx Management

Bills/Banking

Laundry

Meal Prep

Shopping

Any Household Need

SOURCE: KCMU analysis of 2011 NHATS data.

Share of Community-Based Seniors with a Household Activity Need

Share who need help with:

Serving Low-Income Seniors Where They Live: Medicaid's Role in Providing Community-Based Long-Term Services and

Supports 3

The need for LTSS is more common among some

groups of seniors than others. Dual eligible seniors

are more likely to have an LTSS need than low-

income seniors who do not have Medicaid. Almost

seven in ten dual eligible beneficiaries reported an

LTSS need, a significantly higher rate than among

low-income seniors without Medicaid (52%) or

higher-income seniors without Medicaid (36%) (data

not shown). This pattern holds across different types

(household and self-care) of need (Figure 3). Dual

eligible beneficiaries also are more likely than other

seniors to report having three or more LTSS needs.

This finding in part reflects Medicaid eligibility

policy: seniors may become eligible for Medicaid

LTSS coverage based on their low income and functional needs or by “spending down” their income and

resources to cover medical and LTSS expenses. However, many low-income seniors who do not have Medicaid

also need LTSS. Unless these individuals have private insurance coverage for LTSS, they must pay out-of-

pocket for services, rely on family or friends, or go without needed services. For low-income seniors without

Medicaid, accessing needed services may be particularly difficult, given limited resources.

Not surprisingly, older seniors are most likely to need LTSS. Compared to 37% of seniors aged 65 to 74 and

about half of those aged 75-84, nearly three quarters (74%) of those aged 85 and older have an LTSS need

(Figure 4 and Table 1). This pattern is expected given that functioning declines with age, but it also

demonstrates high levels of need among the “very old” (age 85+) who may face additional challenges in

accessing needed services (such as transportation or mobility limitations). It also indicates that, as the

population ages, overall rates of need for LTSS may increase. Differences in rates of need by age exist among

both dual eligible beneficiaries and seniors without Medicaid, though dual eligible beneficiaries at all ages are

more likely to need LTSS than both other low-income and higher-income seniors without Medicaid. Again,

different rates of need by coverage group reflect Medicaid’s role in providing assistance to those with LTSS

needs.

Figure 3

16%

37%

19%* 10%* 13%

32%

16%* 7%*

20%

24%

22%

18%* 21%

25%

24%

17%*

All Dual Eligibles Low-Income without

Medicaid

Higher-Income without

Medicaid

All Dual Eligibles Low-Income without

Medicaid

Higher-Income without

Medicaid

3 or more needs

1 or 2 needs

NOTES: Significantly different from dual eligible beneficiaries at p<0.05 level. SOURCE: KCMU analysis of 2011 NHATS data.

Share of Community-Based Seniors with LTSS Need, by Coverage Group and Type of Need

Household Activity NeedsSelf-Care Needs

36%

61%

41%

28%

33%

57%

40%

24%

Figure 4

Share of Community-Based Seniors with LTSS Need, by Age and Coverage Group

37%*

63%*

41%*

28%*

51%*

70%*

56%*

41%*

74%

84%

74% 68%

All Dual Eligible Low-Income without Medicaid

Higher-Income without Medicaid

65-74 75-84 85+

NOTES: Significantly different from age 85+ at p<0.05 level. SOURCE: KCMU analysis of 2011 NHATS data.

Figure 5

45%

70%

52%

35%

54%*

67%

54%

43%*

58%*

77%

52%

All Dual Eligible Low-Income without Medicaid

Higher-Income without Medicaid

White Non-Hispanic Black Non-Hispanic Hispanic

NA

NOTES: Rate among Hispanic Higher-Income Medicare-only beneficiaries not shown because estimate does not meet standards for statistical reliability. *Significantly different from White Non-Hispanic at p<0.05 level. SOURCE: KCMU analysis of 2011 NHATS data.

Share of Community-Based Seniors with LTSS Need, by Race/Ethnicity and Coverage Group

Share with any need:

Serving Low-Income Seniors Where They Live: Medicaid's Role in Providing Community-Based Long-Term Services and

Supports 4

Women also are more likely to need LTSS, with more than half of elderly women (52%) having an LTSS need

compared to four in ten men. Even controlling for coverage group/income and age, women are more likely than

men to need LTSS (see Table 1). In addition, people of color are more likely to have an LTSS need than White,

Non-Hispanics. More than half of Black (54%) or Hispanic (58%) seniors have an LTSS need, compared to 45

percent of White Non-Hispanics. Some of the differences in rates of need by race/ethnicity likely reflect

income; when examining rates of need within income/coverage group, there was no difference in rates of need

by race/ethnicity among either dual eligible beneficiaries or low-income seniors without Medicaid (Figure 5

and Table 1).

Lastly, most seniors (about 90%, data not shown) are linked to a regular source of health care and the

percentage with LTSS need is higher than among the small percentage of seniors who are not linked to care.

However, nearly four in ten (38%) seniors who say they do not have a regular health care provider need LTSS,

and three in ten who have not seen a regular provider in the past year need LTSS (Table 1). While these rates of

need are lower than those among seniors who do have regular providers or did see their provider in the past

year, they indicate relatively high levels of need among seniors who do not appear to be linked to a regular

source of care. Health care providers may be an important resource for screening for LTSS needs and

connecting low-income people to Medicaid coverage and services, and people who are not linked to care may

be harder to reach. Identifying people with LTSS needs as early as possible and connecting them to services can

be cost-effective over time by preventing or postponing the need for more intensive services or institutional

care as functioning declines due to unmet needs.

In recent years, many states have undertaken efforts to coordinate Medicaid LTSS with other services,

including both those provided by Medicaid and by Medicare, or to actively manage LTSS through managed

care programs. Understanding the health and social characteristics of seniors with LTSS needs can help

policymakers design programs to address the needs of this population. Among both dual eligible beneficiaries

and low-income seniors without Medicaid, most seniors with an LTSS need have physical or mental health

problems and live in a private residence. However, there are notable differences between the LTSS population

served by Medicaid and the LTSS population that does not have Medicaid: Medicaid beneficiaries are frailer in

that they have poorer health, higher rates of mobility impairment, and higher rates of cognitive impairment or

mental illness. They also are more likely to live alone or in poor housing conditions. Still, the population of

low-income seniors without Medicaid who need LTSS also is vulnerable, with notable shares having significant

physical or mental impairment and living in arrangements that may make it difficult to obtain needed

assistance.

Serving Low-Income Seniors Where They Live: Medicaid's Role in Providing Community-Based Long-Term Services and

Supports 5

Figure 6

43%

62%

45%*

31%*

All Dual Eligible Low-Income without Medicaid

Higher-Income without Medicaid

NOTES: Includes seniors living in the community who have an LTSS need. * Significantly different from dual eligible beneficiaries at the p<0.05 level. SOURCE: KCMU analysis of 2011 NHATS data.

Self-Reported Health Status of Community-Based Seniors with an LTSS Need, by Coverage Group Share who report fair or poor health:

Poor health and the need for LTSS are closely related. Overall, over half (57%) of seniors with an LTSS need

live with at least three chronic conditions (such as high blood pressure, arthritis, osteoporosis, diabetes, or

heart disease6), and this rate is similarly high among

dual eligible beneficiaries and low-income seniors

without Medicaid with an LTSS need (Table 2). While

not surprising, these patterns show a strong

relationship between physical illness and LTSS needs.

Similarly, many (43%) seniors with an LTSS need say

their overall health is fair or poor, though dual eligible

beneficiaries are more likely than low-income seniors

without Medicaid to say that their overall health is fair

or poor (Figure 6). This difference may reflect dual

eligible beneficiaries having more complex health

needs or comorbidities than seniors without Medicaid.

Mobility problems are also common among seniors with LTSS needs. Overall, nearly four in ten (39%) seniors

with an LTSS need use a mobility device (cane, wheelchair, walker or scooter) either inside or outside their

home. Among dual eligible beneficiaries with an LTSS need, however, rates are higher, with more than half

(53%) requiring a mobility device in or outside the home (Figure 7). Though older (age 85+) beneficiaries in all

coverage/income groups are more likely to use a mobility device than younger seniors, the pattern of dual

eligible beneficiaries being more likely to use mobility devices holds across age groups (Table 2). This finding

may point to a need for special transportation programs for dual eligible beneficiaries, particularly if they

require health or social services outside the home.

Falls are a serious problem among older adults, occurring frequently and leading to serious injury or even

death; fear of falls is also common and can lead to self-imposed restrictions on activity that in turn contribute

to mobility impairment.7 Indeed, corresponding to mobility impairments, half of seniors with an LTSS need

Figure 7

39%

53%

42%*

29%*

All Dual Eligible Low-Income without Medicaid

Higher-Income without Medicaid

NOTES: Includes seniors living in the community who have an LTSS need. * Significantly different from dual eligible beneficiaries at the p<0.05 level. SOURCE: KCMU analysis of 2011 NHATS data.

Mobility Impairment among Community-Based Seniors with an LTSS Need, by Coverage Group Share who use a mobility device inside or outside of the home:

Figure 8

50%

58% 53%*

44%*

All Dual Eligible Low-Income without Medicaid

Higher-Income without Medicaid

NOTES: Includes seniors living in the community who have an LTSS need. * Significantly different from dual eligible beneficiaries at the p<0.05 level. SOURCE: KCMU analysis of 2011 NHATS data.

Fall Incident or Fear of Falling Among Community-Based Seniors with an LTSS Need, by Coverage Group Share who report falling or fear of falling in the prior month:

Serving Low-Income Seniors Where They Live: Medicaid's Role in Providing Community-Based Long-Term Services and

Supports 6

report that they have either had a fall or feared falling in the prior month, and dual eligible beneficiaries with

an LTSS need are more likely than other seniors to report falling or having a fear of falling (Figure 8). However,

because fall incidents or risk increase with age, among seniors with an LTSS need in the age groups 75-84 or

85+, there is no difference across coverage/income groups in the likelihood of falling or fear of falling (Table 2).

Because falls lead to increased health care utilization and costs,8,9 high rates of falling and fall risk may be of

concern for programs serving the community-based LTSS population.

Similar to those with physical limitations, people with cognitive impairments may require extra assistance and

substantial supervision in managing day-to-day self-care or household activities. They may also be particularly

challenging to serve, as these impairments sometimes manifest in difficult behavior. Overall, nearly one in

three (32%) seniors with an LTSS need has a cognitive impairment, defined here as possible or probable

dementia.10 However, among dual eligible beneficiaries, the rate is 47 percent, significantly higher than among

seniors without Medicaid (Figure 9). The likelihood of having a cognitive impairment increases with age, and

by age 85, there are no statistical differences in the prevalence of cognitive impairment between dual eligible

beneficiaries and low-income seniors without Medicaid (Table 2). Recently proposed federal regulations for

staffing in nursing facilities call for additional training in caring for people with dementia,11 but no similar

federal requirements exist for care delivered in the community.12 Thus, states and other programs serving the

LTSS population in the community may need to develop their own guidelines to ensure best practices in caring

for the seniors with dementia or other cognitive impairment.

Integrated care that coordinates physical and behavioral health is a goal of many recent initiatives to serve the

LTSS population in the community. More than six in ten (61%) seniors with an LTSS need report feeling

depressed or having anxiety. Among seniors with an LTSS need, dual eligible beneficiaries are more likely than

seniors without Medicaid to report symptoms of depression or anxiety (Figure 10). These patterns vary when

looking at specific age groups, as rates of depression and anxiety generally even out between coverage/income

groups at older ages (Table 2). As with the high prevalence of physical comorbidities or multiple chronic

conditions, high rates of behavioral health need among people with LTSS needs may represent an opportunity

for additional coordination of services.

Figure 9

32%

47%

36%*

21%*

All Dual Eligible Low-Income without Medicaid

Higher-Income without Medicaid

NOTES: Includes seniors living in the community who have an LTSS need. * Significantly different from dual eligible beneficiaries at the p<0.05 level. SOURCE: KCMU analysis of 2011 NHATS data.

Cognitive Impairment among Community-Based Seniors with an LTSS Need, by Coverage Group Share with probable or possible dementia:

Figure 10

61%

69%

62%* 56%*

All Dual Eligible Low-Income without Medicaid

Higher-Income without Medicaid

NOTES: Includes seniors living in the community who have an LTSS need. * Significantly different from dual eligible beneficiaries at the p<0.05 level. SOURCE: KCMU analysis of 2011 NHATS data.

Depression or Anxiety among Community-Based Seniors with an LTSS Need, by Coverage Group Share who report feeling depressed or having anxiety:

Serving Low-Income Seniors Where They Live: Medicaid's Role in Providing Community-Based Long-Term Services and

Supports 7

In addition to maintaining self-sufficiency and promoting independence, delivering care in the least-restrictive

setting, and lowering long-term care costs, a central goal of helping people with LTSS needs remain in the

community is to preserve social networks and community integration. Notably, among seniors with an LTSS

need, only 6 percent say they have no one to talk to about important things—a proxy for social isolation. These

rates are low across all coverage/income groups. When looking at specific age groups, however, younger (age

65-74) dual eligible beneficiaries are particularly likely to report not having someone to talk to (12%, versus 5%

for seniors without Medicaid in the same age range) (Table 2). The higher rate among this group may indicate

barriers to being integrated into the community and a need for more social interaction for this population.

People who live in assisted living or senior housing/retirement communities may have access to more social or

supportive services than those who do not live in such places. Overall, the majority (85%) of seniors with an

LTSS need live in a private residence, versus an assisted living facility or senior housing/retirement

community. However, dual eligible beneficiaries are less likely than seniors without Medicaid to live in a

private residence and are more likely to live in senior housing or a retirement community (Figure 11), perhaps

reflecting a greater level of need among dual eligible beneficiaries. These differences decrease at older ages

(Table 2).

In addition, dual eligible beneficiaries with LTSS needs are more likely than seniors without Medicaid to live

alone (Figure 12). This pattern holds for those ages 65 to 84, but differences decrease at older ages (Table 2).

Notably, much of the low-income LTSS population without Medicaid lives alone. While people who live alone

but have Medicaid coverage may receive personal care services to help them with day-to-day tasks, those who

live alone, need LTSS, and do not have Medicaid must either pay for help out-of-pocket or rely on someone to

come to their home daily to help them. Some people with LTSS needs live with someone else, in addition to a

spouse or partner, perhaps because they select living arrangements that enable them to receive assistance from

extended family or friends. Dual eligible beneficiaries are more likely than seniors without Medicaid to live

with someone besides a spouse or partner, though many low-income seniors without Medicaid also have such

living arrangements.

Figure 11

85% 76%

85%* 88%*

5%

7%

4% 4% 10%

15% 9%* 7%*

All Dual Eligible Low-Income without Medicaid

Higher-Income without Medicaid

Senior Housing/ Retirement Community

Assisted Living

Private Residence

NOTES: Includes seniors living in the community who have an LTSS need. Total percentages do not add up to 100 percent because a small percentage of NHATS participants refused to answer or did not know their residence type. Private residence includes a small percentage of people living in Continuing Care Retirement Communities. * Significantly different from dual eligible beneficiaries at the p<0.05 level. SOURCE: KCMU analysis of 2011 NHATS data.

Residence Type of Community-Based Seniors with an LTSS Need, by Coverage Group

Share who live in residence type:

Figure 12

33% 44%

33%* 28%*

39% 16% 36%* 52%*

19% 31%

21%* 11%*

9% 9% 9% 9%

All Dual Eligible Low-Income without Medicaid

Higher-Income without Medicaid

Live with Other Person

Live with Spouse/Partner & Others

Live with Spouse/Partner Only

Live Alone

NOTES: Includes seniors living in the community who have an LTSS need. * Significantly different from dual eligible beneficiaries at the p<0.05 level. SOURCE: KCMU analysis of 2011 NHATS data.

Living Situation of Community-Based Seniors with an LTSS Need, by Coverage Group

Serving Low-Income Seniors Where They Live: Medicaid's Role in Providing Community-Based Long-Term Services and

Supports 8

Figure 13

26%

37%

27%*

19%*

All Dual Eligible Low-Income without Medicaid

Higher-Income without Medicaid

NOTES: Includes seniors living in the community who have an LTSS need. * Significantly different from dual eligible beneficiaries at the p<0.05 level. SOURCE: KCMU analysis of 2011 NHATS data.

Housing Condition of Community-Based Seniors with an LTSS Need, by Coverage Group Share whose home needs interior or exterior repair or attention:

Further, among all seniors with an LTSS need, many live in a home that needs repair to the interior or exterior

(26%). These repair needs may include minor conditions (e.g., flaking paint, a broken lamp) or more serious

conditions (e.g., pests, tripping hazards) that pose a health hazard. Poor housing conditions may reflect the

occupant’s limited income or ability to keep up on repairs, but a growing body of evidence indicates that these

conditions can also have a deleterious effect on

overall health and functioning.13 Thus, housing

conditions may represent a challenge for programs

and individuals trying to serve the population with

LTSS needs, particularly since such repairs are not

covered by Medicaid despite their impact on health.

Dual eligible beneficiaries are more likely than

seniors without Medicaid to live in a residence in

need of interior or exterior repairs (Figure 13).

Among older seniors (ages 85 and older), fewer

differences in housing conditions are found across

income groups, with low-income seniors without

Medicaid as likely as dual eligible beneficiaries to live

in a residence that needs repair (Table 2).

Understanding the community-based population of seniors with LTSS needs is particularly important for

designing effective systems to serve their needs. This population is at high risk for needing institutional care,

which can be costly and is not the preferred site of care for most people. In addition, people in the community

who need LTSS may not be linked to services or programs to meet their needs, placing them at risk of

developing more extensive, and costly, needs over time. These outcomes are particularly likely for low-income

seniors who do not have Medicaid, as they likely lack other coverage for LTSS and have limited resources to

purchase these services. Should the low-income population without Medicaid reach the point where they need

institutional care, many would likely become eligible for Medicaid.

Medicaid currently plays an important role in helping people with LTSS needs maintain health and functioning

in the community. Because many dual eligible beneficiaries qualify for Medicaid as a result of a disability, high

medical expenses, or a need for LTSS, rates of LTSS need are particularly high among seniors with Medicaid.

Further, Medicaid seniors with LTSS needs are in worse overall physical or mental health than other seniors,

indicating that Medicaid is serving the LTSS needs of a population with particularly complex health, social, and

environmental needs.

The high level of LTSS need among Medicaid beneficiaries has implications for how to best deliver services to

these seniors. This analysis shows high rates of comorbid physical and mental health problems among dual

eligible beneficiaries with LTSS needs; it also finds a need for social supports such as efforts to improve

housing conditions, reduce fall risk, and, in some cases, address social isolation. Delivery system reform

initiatives seeking to better coordinate care across the domains of medical and LTSS and to integrate physical

Serving Low-Income Seniors Where They Live: Medicaid's Role in Providing Community-Based Long-Term Services and

Supports 9

and behavioral health services could allow these beneficiaries’ needs to be met in a more holistic manner while

potentially improving health outcomes and lowering costs. As of October 2014, 19 states had waivers to operate

capitated managed long-term services and supports programs, most of which require beneficiaries to enroll in

a Medicaid managed care organization to receive services, and as of July 2015, 12 states were implementing

demonstrations seeking to better integrate services and align financing for dual eligible beneficiaries. Many of

these programs aim to increase access to community-based services, and most integrate LTSS with acute and

primary care as well as behavioral health services.14 Work is ongoing to measure how well these programs are

meeting their goals and the needs of beneficiaries.15

States can select from among a variety of optional services to meet Medicaid beneficiaries’ LTSS needs, many of

which allow beneficiaries to self-direct their services by selecting their personal care provider and/or

administering their services budget. In recent years, new and expanded options to provide Medicaid LTSS

have become available, although some programs are time-limited and set to expire.16 For example, the

Affordable Care Act provides new Medicaid state plan options, with enhanced federal funding, for states to

cover attendant care services and supports through the Community First Choice program and health home

services to improve care coordination for beneficiaries with chronic conditions.17 As of July, 2015, five states

had adopted the Community First Choice option,18 and as of June, 2015, 19 states had adopted the Medicaid

health homes option.19 States have the flexibility to choose among various optional Medicaid services to design

programs that best meet the needs of beneficiaries, and a better understanding of the characteristics of this

population can assist those efforts.

In addition, the complexity of needs among the Medicaid population may indicate a role for LTSS to prevent

deterioration in health status that could result in more costly long-term institutional care. With dual eligible

beneficiaries more likely to live alone, these seniors may have less access to natural supports (such as a family

caregiver) that could delay the need for formal LTSS. At the same time, supports may be needed to address the

social determinants of health. For example, many dual eligible beneficiaries with LTSS needs live in a home in

need of repairs. Investments to remediate these conditions, such as pests or tripping hazards, while not

medical in nature, might help to avoid future health care costs arising from injuries or medical exacerbations

stemming from these conditions if they remain unaddressed. While Medicaid does not cover home repairs,

states may encourage their Medicaid managed care organizations to offer medically appropriate alternative

services as cost-effective substitutes in lieu of services covered under the Medicaid state plan.20

While Medicaid is serving many seniors with LTSS needs, many low-income seniors who do not have Medicaid

also have LTSS needs. This population still has notable rates of physical and mental health comorbidity, and

many live in housing situations that may make it difficult to meet their needs in addition to lacking financial

resources to pay for care out-of-pocket. Providing LTSS to meet this population’s needs may be cost-effective

over the long-term as unmet needs may worsen and require more costly services to address in the future. In the

absence of other public or private sources of LTSS coverage, Medicaid remains the nation’s primary payer for

these services. States have a number of options to expand Medicaid eligibility to offer services to those in need

of LTSS where medically necessary. For example, the Affordable Care Act expanded the § 1915(i) state plan

option to create a new Medicaid eligibility pathway, including access to home and community-based services.21

Through this option, states can choose to cover (1) people who are not otherwise eligible for Medicaid with

Serving Low-Income Seniors Where They Live: Medicaid's Role in Providing Community-Based Long-Term Services and

Supports 10

income up to 150 percent of the federal poverty level and no resource limit and/or (2) people who would be

eligible for Medicaid under an existing waiver with income below 300 percent of the SSI federal benefit rate.

Importantly, the § 1915(i) option enables states to offer home and community-based LTSS to beneficiaries who

meet state-established functional eligibility criteria that are less restrictive than the state’s institutional level of

care criteria. This allows states to offer home and community-based services as a preventive measure, before a

person’s needs deteriorate to the point where institutional care is required. As of July 2015, 17 states had

adopted the § 1915(i) option.22

States also have flexibility to set financial and functional eligibility criteria for Medicaid home and community-

based waiver programs. At state option, these criteria may be more restrictive than the criteria used to qualify

for Medicaid-funded nursing facility services.23 Limiting access to community-based services in this way can

create a bias toward institutional care and barriers to returning to the community once the more restrictive

waiver eligibility criteria are met. Even though community-based care may be less expensive than comparable

institutional care, people who move into nursing facilities are likely to lose their community-based housing and

other resources and connections that can help support their functioning in the community.

In addition, not all people who qualify for Medicaid home and community-based waivers receive those services.

Unlike nursing facility services, which must be provided to beneficiaries if eligible, states can limit waiver

enrollment. Enrollment caps can result in waiting lists for Medicaid-funded community-based services.

Waiting list length varies by state and within states by waiver population. In 2013, there were over 27,000

people waiting for Medicaid waiver services targeted to seniors, with an average wait time of 13 months, and

over 127,000 people waiting for waiver services targeted to seniors and non-elderly people with physical

disabilities, with an average wait time of 10 months.24 While many people waiting for Medicaid waiver services

are presently living in the community, their unmet LTSS needs may put them at risk of institutionalization

and/or requiring more costly services in the future.

Looking ahead, state and federal policymakers and other stakeholders will be challenged to meet the growing

need for LTSS to support seniors living in the community in a way that accommodates diverse needs, ensures

care quality, and manages costs. Insight into the socio-demographic and health status characteristics of these

seniors, especially dual eligible beneficiaries who rely on Medicaid for their LTSS needs and how they may be

similar to or different from other seniors with LTSS needs, can lead to increased understanding about how to

optimize policies to support these populations.

Serving Low-Income Seniors Where They Live: Medicaid's Role in Providing Community-Based Long-Term Services and

Supports 11

This analysis uses data from the National Health and Aging Trends Study (NHATS), a longitudinal survey of Medicare

beneficiaries ages 65 and older. † Participants are drawn from a nationally representative sample of Medicare

beneficiaries and interviewed annually in-person. To keep the sample as large as possible, we used NHATS Round 1 data,

reflecting the Medicare population in 2011. We subset the data to include only those who lived outside nursing facilities

and completed the interview.

We stratified the analysis by age categories of 65-74, 75-84, and 85 and over. Within each age category, we further

stratified the analysis into dual eligibility/income groups, which included (i) dual eligible beneficiaries with income

below 300% of the 2011 Supplemental Security Income (SSI) federal benefit rate (FBR), (ii) non-dual eligible

beneficiaries with incomes below 300% SSI, who we call “low-income without Medicaid” throughout the analysis, and

(iii) beneficiaries with incomes at or above 300% SSI, who we call “higher-income without Medicaid” throughout the

analysis. We chose to use the 300% SSI break for income to reflect policy rules about which individuals may be eligible

for Medicaid long-term care assistance. Note that dual eligible beneficiaries account for a small share (<2%) of the

higher income group, but we do not stratify the higher income group by dual eligibility status.

NHATS collects information about different sources of income as well as total income; for respondents who do not know

or refuse to provide income information, the survey includes imputed income. If a person is single, does not live with a

partner, or is separated, income includes only the respondent’s own income; if a person is married or living with a

partner, income includes both the respondent’s income and their spouse’s/partner’s income. We randomly selected the

variable ia1toincim5 from the 5 generated income variables and compared it to the 2011 monthly SSI FBR ($2,022 for an

individual and $3,033 for a couple).

We excluded respondents who either refused or did not know if they were married because we were unable to ascertain

which income threshold (single or married) to use in comparing their incomes to the 2011 SSI FBR. We also excluded

participants who did not know or refused to answer their Medicaid enrollment status. The total number of respondents

who could not be categorized into an income or coverage group due to missing data was 217, leading to a final sample

size of 7,395.

First, we analyzed which participants have any LTSS need by looking at self-care/mobility and household activities. We

identified participants as having an LTSS need if they reported having difficulty completing an activity or receiving help

with an activity (for household activities help due to a health or functioning reason). Self-care/mobility activities include

bathing, dressing, toileting, eating, getting out of bed, getting around inside, and getting outside. Household activities

include laundry, shopping, meal preparation, banking, and medication management.

We then looked at socio-demographic characteristics and health status among those who had any LTSS need. All

percentages in Tables 1 and 2 are from the non-nursing facility sample with any self-care or household activity need,

except for “interior or exterior of the home needs repair/service/attention” and “has no one to talk to.” The former

percentage is from the subset of non-nursing facility participants with an LTSS need whose home the interviewer

observed. The latter is from the subset of non-nursing facility participants with an LTSS need who completed the survey

themselves, rather than through a proxy.

† Jill Montaquila, Vicki A. Freedman, Brad Edwards and Judith D. Kasper. 2012. National Health and Aging Trends Study Round 1 Sample Design and Selection. NHATS Technical Paper #1. Baltimore: Johns Hopkins University School of Public Health, http://www.nhats.org/scripts/sampleDesign.htm.

Table 1: Prevalence of Need for LTSS Among Community-Based Seniors, by Coverage Group and by Age, 2011

All Ages/Coverage

Groups

By Coverage Group By Age

Dual Eligible

Low-Income without Medicaid

Higher-Income without Medicaid

Age 65- 74

Age 75- 84

Age 85+

Age

65-74 37%* 63%* 41%* 28%* 37% NA NA

75-84 51%* 70%* 56%* 41%* NA 51% NA 85 Plus (reference) 74% 84% 74% 68% NA NA 74% Gender Female 52%* 74%* 56%*  40%* 40%* 57%* 78%*  Male (reference) 40% 60% 47%  32% 33% 43% 65%  Race/Ethnicity White Non-Hispanic (reference) 45% 70% 52% 35% 35% 49% 72%

Black Non-Hispanic 54%* 67% 54% 43%* 45%* 63%* 78%

Hispanic 58%* 77% 52% -- 47%* 69%* --

Other Race/Ethnicity 41% -- -- -- -- -- --

Usual source of care Has a regular doctor 47%* 70% 53%* 36% 37%* 51% 73% Does not have a regular doctor (reference)

38% -- 42% 30% 24% 52% --

Health Care Utilization Has seen regular doctor in past year

48%* 70% 54%* 37%* 38%* 52%* 74%

Has not seen regular doctor in past year (reference)

30% -- 36% 19% 20% 38% --

NOTES: Dual eligible includes people who receive Medicare and Medicaid and have income below 300% SSI. Low-Income without Medicaid includes Medicare beneficiaries without Medicaid and income below 300% SSI. Higher-Income without Medicaid includes people with income at or above 300% SSI. Dual eligible beneficiaries comprise a small share (<2%) of the ≥300% SSI comparison group population. See methods appendix for more detail. * Significantly different from reference group at the p<0.05 level. -- Estimates with relative standard errors greater than 30% are not provided. SOURCE: KCMU analysis of 2011 NHATS data.

Serving Low-Income Seniors Where They Live: Medicaid's Role in Providing Community-Based Long-Term Services and Supports 12

Serving Low-Income Seniors Where They Live: Medicaid's Role in Providing Community-Based Long-Term Services and Supports 13

Table 2: Characteristics of Seniors with a Need for LTSS, by Health Status and Quality of Life, by Age and Coverage Group, 2011

All Ages/ Coverage Groups

All Ages Age 65-74 Age 75-84 Age 85+

Dual Eligible

Low- Income without Medicaid

Higher- Income without Medicaid

Dual Eligible

Low- Income without Medicaid

Higher- Income without Medicaid

Dual Eligible

Low- Income without Medicaid

Higher- Income without Medicaid

Dual Eligible

Low- Income without Medicaid

Higher- Income without Medicaid

Household Type Live alone 33% 44% 33%* 28%* 44% 25%*^ 18%*^ 41% 32%*^ 31%*^ 51% 48% 49%

Live with spouse/partner 39% 16% 36%* 52%* 18%^ 45%*^ 61%*^ 18%^ 38%*^ 50%*^ -- 18%* 29%*

Live with other person (not spouse/partner)

9% 9% 9% 9% 10% 14%^ 12%^ 9% 10%^ 8% -- 3% 6%

Live with spouse/partner and other(s)

19% 31% 21%* 11%* 28%^ 17%*^ 8%*^ 32% 20%*^ 11%*^ 38% 30% 16%*

Residence Type Private residence or Continuing Care Retirement Community

85% 76% 85%* 88%* 76% 90%*^ 94%*^ 79% 87%*^ 89%*^ 70% 77% 73%

Assisted living 5% 7% 4% 4% -- -- 0% -- 3%^ -- 13% 10% 15%

Retirement community/senior housing

10% 15% 9%* 7%* 15% 8%* 6%* 16% 9%* 7%* 12% 11% 10%

Condition of residence Interior or exterior of the home needs repair/service/attention

26%  37%  27%*  19%*  39%^  28%*  20%*  41%^  27%*  21%*  27%  24%  16%* 

Health Status & Mobility Self-reported fair or poor health

43% 62% 45%* 31%* 69%^ 47%*^ 31%* 58% 46%*^ 31%* 55% 39%* 31%*

Has 3 or more chronic conditions 57% 63% 58% 51%* 63% 57% 49%* 64% 61% 55%* 60% 56% 51%* Uses mobility device inside or outside

39% 53% 42%* 29%* 43%^ 27%*^ 19%*^ 55%^ 42%*^ 30%*^ 75% 63%* 56%*

Had a fall or worried about falling in the last month

50% 58% 53%* 44%* 58% 48%*^ 37%*^ 58% 55% 50% 58% 57% 54%

Cognitive Impairment & Mental Health Probable or possible dementia

32% 47% 36%* 21%* 36%^ 20%*^ 12%*^ 52%^ 39%*^ 23%*^ 64% 58% 42%*

Felt down, depressed, hopeless or nervous, anxious, or on edge

61% 69% 62%* 56%* 71% 64% 55%* 67% 62% 56%* 65% 59% 56%

Has no one to talk to 6% 9% 7% 5%* 12% 5%* 5%* 6% 9% 5% -- 7% 5%

NOTES: Dual eligible includes people who receive Medicare and Medicaid and have income below 300% SSI. Low-Income without Medicaid includes Medicare beneficiaries without Medicaid and income below 300% SSI. Higher-Income without Medicaid includes people with income at or above 300% SSI. Dual eligible beneficiaries comprise a small share (<2%) of the ≥300% SSI comparison group population. See methods appendix for more detail. * Significantly different from dual eligible beneficiaries within the same age group at the p<0.05 level. ^ Significantly different from beneficiaries age 85+ within the same coverage group at the p<0.05 level. -- Estimates with relative standard errors greater than 30% are not provided. SOURCE: KCMU analysis of 2011 NHATS data.

1

See generally Victoria Peebles and Alex Bohl, CMS/Mathematica Policy Research, The HCBS Taxonomy: A New Language for Classifying Home and Community-Based Services (Aug. 2013), available at http://www.mathematica- mpr.com/~/media/publications/PDFs/health/max_ib19.pdf.

2

MaryBeth Musumeci and Henry Claypool, Olmstead’s Role in Community Integration for People with Disabilities Under Medicaid: 15 Years After the Supreme Court’s Olmstead Decision (June 2014) Washington, DC: Kaiser Family Foundation, available at http://kff.org/medicaid/issue-brief/olmsteads-role-in-community-integration-for-people-with-disabilities-under-medicaid-15-years- after-the-supreme-courts-olmstead-decision/.

3

Erica Reaves and MaryBeth Musumeci, Medicaid and Long-Term Services and Supports: A Primer (May 2015), available at http://kff.org/medicaid/report/medicaid-and-long-term-services-and-supports-a-primer/.

4

Terence Ng, Charlene Harrington, MaryBeth Musumeci, and Erica L. Reaves. Medicaid Home and Community-Based Services Programs: 2011 Data Update. (December 2014). Washington, DC: Kaiser Family Foundation, available at: http://kff.org/medicaid/report/medicaid-home-and-community-based-services-programs-2011-data-update/.

5

The analysis includes seniors living in a private residence, assisted living facility, or retirement community and excludes those in nursing facilities. For Medicaid funding purposes, states are currently in the process of determining whether specific settings qualify as “home and community-based” to come into compliance with recent federal regulations. 79 Fed. Reg. 2948-3039 (Jan. 16, 2014), available at http://www.gpo.gov/fdsys/pkg/FR-2014-01-16/pdf/2014-00487.pdf.

6

Chronic illnesses included in this analysis are arthritis, cancer, diabetes, heart disease, high blood pressure, lung disease, osteoporosis, and stroke.

7

Centers for Disease Control and Prevention. Older Adult Falls: Get the Facts, available at http://www.cdc.gov/homeandrecreationalsafety/falls/adultfalls.html.

8

Stevens JA, Corso PS, Finkelstein EA, Miller TR. The costs of fatal and non-fatal falls among older adults. Inj Prev. 2006 Oct;12(5):290-5.

9

Shumway-Cook A, Ciol MA, Hoffman J, Dudgeon BJ, Yorkston K, Chan L. Falls in the Medicare population: incidence, associated factors, and impact on health care. Phys Ther. 2009 Apr;89(4):324-32.

10

Kasper, JD, Freedman VA, Spillman BC. Classification of Persons by Dementia Status in the National Health and Aging Trends Study. Technical Paper #5. 2013, available at www.nhats.org.

11

80 Fed. Reg. 42168-42269 (July 16, 2015), available at https://www.federalregister.gov/articles/2015/07/16/2015-17207/medicare- and-medicaid-programs-reform-of-requirements-for-long-term-care-facilities.

12

Georgia Burke and Gwen Orlowski, Justice in Aging, Training to Serve People with Dementia: Is our Health Care System Ready?, Paper 1: Issue Overview (Aug. 2015), available at http://www.justiceinaging.org/our-work/healthcare/dementia-training- requirements/dementia-training-requirements-state-by-state/ (finding that dementia training requirements for home health aides and personal care assistants subject to state licensure exist in a minority of states and are limited in scope).

13

Braveman, P. et al. Housing and Health: Issue Brief #7 in Exploring the Social Determinants of Health. Robert Wood Johnson Foundation, May 2011, available at: http://www.rwjf.org/content/dam/farm/reports/issue_briefs/2011/rwjf70451.

14

Musumeci M. Financial and Administrative Alignment Demonstrations for Dual Eligible Beneficiaries: States with Memoranda of Understanding Approved by CMS (Sept. 2015) Washington, DC: Kaiser Family Foundation, available at http://kff.org/medicaid/issue- brief/financial-alignment-demonstrations-for-dual-eligible-beneficiaries-compared/; Musumeci M. Key Themes in Capitated Medicaid Managed Long-Term Services and Supports Waivers. (Washington, DC: Kaiser Family Foundation), November 2014, available at: http://kff.org/report-section/key-themes-in-capitated-medicaid-mltss-key-themes/.

15

Musumeci M. Rebalancing in Capitated Medicaid Managed Long-Term Services and Supports Programs: Key Issues from a Roundtable Discussion on Measuring Performance. (Washington, DC: Kaiser Family Foundation), February 2015, available at: http://kff.org/medicaid/issue-brief/rebalancing-in-capitated-medicaid-managed-long-term-services-and-supports-programs-key- issues-from-a-roundtable-discussion-on-measuring-performance/; Musumeci M. Financial Alignment Demonstrations for Dual Eligible Beneficiaries: A Look at CMS’s Evaluation Plan (July 2014), available at http://kff.org/medicaid/issue-brief/financial- alignment-demonstrations-for-dual-eligible-beneficiaries-a-look-at-cmss-evaluation-plan/.

16

The Balancing Incentive Program, which provides enhanced federal funding to help states increase the proportion of LTSS dollars devoted to community-based services instead of institutional care, expires in September 2015, and the Money Follows the Person program, which provides enhanced federal funding to support institutional to community transitions, expires in September 2016. Molly O’Malley Watts et al. Medicaid Balancing Incentive Program: A Survey of Participating States (June 2015) Washington, DC: Kaiser Family Foundation, available at http://kff.org/medicaid/report/medicaid-balancing-incentive-program-a-survey-of-participating- states/; Molly O’Malley Watts, et al. Money Follows the Person: A 2013 State Survey of Transitions, Services and Costs (April 2014), Washington, DC: Kaiser Family Foundation, available at http://kff.org/medicaid/report/money-follows-the-person-a-2013-survey-of- transitions-services-and-costs/.

17

Molly O’Malley Watts et al. How is the Affordable Care Act Leading to Changes in Medicaid Long-Term Services and Supports Today? State Adoption of Six LTSS Options (April 2013), Washington, DC: Kaiser Family Foundation, available at http://kff.org/medicaid/issue-brief/how-is-the-affordable-care-act-leading-to-changes-in-medicaid-long-term-services-and-supports- ltss-today-state-adoption-of-six-ltss-options/. Kaiser Family Foundation State Health Facts, Health Home State Plan Option, available at http://kff.org/medicaid/state-indicator/health-home-state-plan-option/.

18

Kaiser Family Foundation, Section 1915(k) Community First Choice State Plan Option, available at http://kff.org/medicaid/state- indicator/section-1915k-community-first-choice-state-plan-option/.

19

Kaiser Family Foundation State Health Facts, Health Home State Plan Option, available at http://kff.org/medicaid/state- indicator/health-home-state-plan-option/.

20

CMS, Providing Long Term Services and Supports in a Managed Care Delivery System, Enrollment Authorities and Rate Setting Techniques: Strategies States May Employ to Offer Managed HCBS, CMS Review Processes and Quality Requirements (Dec. 2009), available at http://www.pasrrassist.org/sites/default/files/attachments/10-07-23/ManagedLTSS.pdf.

21

Section 1915(i) allows states to offer the same categories of home and community-based services under their Medicaid state plans as are available under waivers. States may target services to specific populations. Section 1915(i) services must be provided statewide and waiting lists are not permitted, although states can further restrict functional eligibility criteria for future beneficiaries if the state exceeds its projected number of beneficiaries served under this option. Molly O’Malley Watts et al. How is the Affordable Care Act Leading to Changes in Medicaid Long-Term Services and Supports Today? State Adoption of Six LTSS Options (April 2013), Washington, DC: Kaiser Family Foundation, available at http://kff.org/medicaid/issue-brief/how-is-the-affordable-care-act-leading-to- changes-in-medicaid-long-term-services-and-supports-ltss-today-state-adoption-of-six-ltss-options/. Kaiser Family Foundation State Health Facts, Health Home State Plan Option, available at http://kff.org/medicaid/state-indicator/health-home-state-plan-option/.

22

Kaiser Family Foundation State Health Facts, Section 1915(i) Home and Community-Based Services State Plan Option, available at http://kff.org/medicaid/state-indicator/section-1915i-home-and-community-based-services-state-plan-option/.

23

Terence Ng et al. Medicaid Home and Community-Based Services Programs: 2011 Data Update (Dec. 2014), Washington, DC: Kaiser Family Foundation, available at http://kff.org/report-section/medicaid-home-and-community-based-services-programs-2011- data-update-eligibility-and-cost-containment-policies-used-in-medicaid-hcbs-programs/.

24

Ibid., at Table 14.

The Henry J. Kaiser Family Foundation Headquarters: 2400 Sand Hill Road, Menlo Park, CA 94025 | Phone 650-854-9400 Washington Offices and Barbara Jordan Conference Center: 1330 G Street, NW, Washington, DC 20005 | Phone 202-347-5270

www.kff.org | Email Alerts: kff.org/email | facebook.com/KaiserFamilyFoundation | twitter.com/KaiserFamFound

Filling the need for trusted information on national health issues, the Kaiser Family Foundation is a nonprofit organization based in Menlo Park, California.