Promoting Community Living for Older Adults Who Need 

Long-term Services and Support

Jane Tilly, DrPH

Center for Policy and Evaluation

Administration for Community Living

August 2016

The views expressed in this paper are those of the author and not necessarily those of the 

Administration for Community Living or the U.S. Department of Health and Human Services.

1 
Promoting Community Living for Older Adults Who Need

Long-term Services and Supports

Executive Summary

Most older adults1 who need long-term services and supports (LTSS) 2 live in the community, 

often with the help of family and friends, and some receive paid services. Many older adults 

receive help through Older Americans Act-funded meals and in-home services. Those older 

adults with few financial resources often rely on Medicaid to pay for their LTSS because this 

program is the primary public payer for these services. About half of older Medicaid 

beneficiaries receiving LTSS do so in their homes and communities, where older adults prefer to 

live. In contrast, 80% of beneficiaries receiving LTSS under age 65 do so. The disparity that 

older Medicaid beneficiaries experience persists, despite the fact that their home and 

community-based services (HCBS) costs are relatively low compared to other categories of 

beneficiaries. 

The high rate of institutionalization of older Medicaid beneficiaries receiving LTSS continues

more than 15 years after the United States Supreme Court’s decision in Olmstead v. LC. This 

decision held that unjustified isolation of people with disabilities violates the anti-discrimination 

Title II of the Americans with Disabilities Act. Olmstead applies to people of all ages who need 

LTSS, including those who acquire their disabilities after they reach age 65. Many older adults 

will need assistance with activities of daily living (ADLs) 3 at some point in their lives. Although 

some older adults who need LTSS for assistance with these activities do not think of themselves 

as people with disabilities, they do meet the legal definition, and the Olmstead decision applies 

to them.

Many states could do more to comply with Olmstead because they have a great deal of control 

over the LTSS that older Medicaid beneficiaries receive. States operate Medicaid under broad

federal guidelines and decide: 1) financial and functional eligibility criteria for LTSS, and 2) the 

range of HCBS that beneficiaries can receive and under what circumstances. 

States can use their Medicaid flexibility and extant research results to ensure that older 

Medicaid beneficiaries receiving LTSS have as much opportunity to live in the community as do 

younger beneficiaries. For example, states could target their home and community-based 

services to those most at risk of entering nursing homes. Research shows that older adults with 

the most risk are those with limitations in 3 or more ADLs, cognitive impairment, or poor 

health. States could also help ensure that HCBS provide relief to family caregivers because

increased caregiver stress is related to more use of nursing homes. 

States that heavily invest in HCBS would likely see decreased use of nursing homes. Numerous 

studies show that increased public spending on HCBS is associated with lower use of nursing 

1 Defined in this policy brief as people who are aged 65 and over.

2 Long-term services and supports include nursing home care. 3 Activities of daily living include such things as eating, bathing, and dressing. 

2 

 
homes for older adults. This is true for Medicaid-funded HCBS, and separately for Older 

Americans Act (OAA)-funded HCBS and meals. 

Older adults with dementia are at high risk of using nursing homes due to cognitive impairment. 

Effective use of proven dementia care interventions for people with the condition and their 

family caregivers has the potential to reduce nursing home use. Researchers identify five 

common components of quality dementia care including: 1) formal diagnosis, 2) education of 

people with dementia and their families, 3) provision of supports and services to them, 4) 

attention to medication needs, and 5) adjustment of care goals over time. 

States vary in terms of their approaches to providing HCBS and many states have the

opportunity to provide more of them to older adults with disabilities, including those with 

dementia. States also have a responsibility to ensure that their nursing homes respond 

appropriately to their residents’ desire to leave the facility and live in their communities. If 

states take these steps, they can improve the lives of older adults with disabilities and their 

caregivers. 

3 
Promoting Community Living for Older Adults Who Need 

Long-term Services and Supports

Most older adults who need LTSS live in the community, often with the help of family and 

friends, and some receive paid services. (Freedman and Spillman, 2014). Many older adults 

receive help through Older Americans Act-funded meals and in-home services. Those with few 

financial resources often rely on Medicaid, which is the primary public payer of long-term 

services and supports (LTSS). About half of older Medicaid beneficiaries who receive LTSS live 

in nursing homes (Eiken and colleagues, September 2015). However, older adults prefer to live

in their homes and communities (Keenan, 2010). 

Older Medicaid beneficiaries’ high rate of institutionalization persists more than 15 years after

the United States Supreme Court’s Olmstead v. LC decision in 1999. The Court held that 

unjustified isolation of people with disabilities in institutions violates the anti-discrimination 

Title II of the Americans with Disabilities Act. The Court added that public entities must provide 

community-based services to persons with disabilities when: (1) such services are appropriate; 

(2) the affected persons do not oppose community-based treatment; and (3) community-based 

services can be reasonably accommodated, taking into account the resources available to the 

public entity and the needs of others who are receiving disability services from the entity (U.S. 

Department of Justice, 2016). 

Olmstead applies to people of all ages who need LTSS, including those who acquire their 

disabilities after they reach age 65. Many older adults will need assistance with ADLs at some 

point in their lives. Although some older adults who need LTSS for assistance with these 

activities do not think of themselves as people with disabilities, they do meet the legal 

definition, and the Olmstead decision applies to them. While Olmstead applies to people of all 

ages with all types of disabilities across the country, progress toward community living varies by 

nursing home, age, type of disability and state.

This policy brief argues that many states could be providing more home and community-based 

services (HCBS) to older adults with disabilities and: 

1. Documents problems with nursing home residents’ access to assistance in leaving their 

facilities to live in their communities. 

2. Documents differences in Medicaid beneficiaries’ receipt of LTSS by age and state. 

3. Offers recommendations to states for promoting community living for older adults with 

disabilities. 

4. Documents the impact of providing increased HCBS to older adults with disabilities. 

5. Describes the special circumstances of older adults with dementia, who are at high risk 

of nursing home use. 

4 
1. Nursing Homes Residents’ Access to Assistance

Nursing home residents, including older adults who want to transition to their homes and 

communities, sometimes do not get the help they seek, according to the U.S. Department of 

Health and Human Services (Schell, 2016). The Department’s Office for Civil Rights examined 

data from the Minimum Data Set’s4 “Section Q,” which enables individuals to express interest 

in learning more about opportunities to live outside of the nursing home. When a resident 

expresses this desire, nursing homes are required to notify a state-designated “local contact 

agency.” These agencies must then contact interested individuals by telephone or in person, 

and provide information/education about home and community-based options.

The Department found that at least 50,000 nursing home residents from over 7000 nursing 

homes said they wanted to talk with someone about leaving their facility, but never received a

referral to a local agency that could help them. Among the reasons nursing homes cited for 

their lack of responsiveness were problems with knowing a local agency that could help 

residents transition to their homes or communities, family not wanting the resident to leave, 

and the facility’s assertion that the resident had too much disability to leave. All of these 

reasons fail to directly consider the residents’ wishes. 

States have a role in ensuring that residents have access to information about transitioning 

from nursing homes. For example, states must make available designated “local contact 

agencies” to provide information to individuals who live in nursing homes about returning to 

the community. Depending on the state, “local contact agencies” may be Aging and Disability 

Resource Centers (ADRCs, or “No Wrong Door” Systems), area agencies on aging, long-term 

care ombudsman programs, centers for independent living, or other entities. Each of these 

entities has the expertise to educate individuals who live or work in nursing homes about HCBS 

options. States can also provide HCBS that can help residents live in the community, if they are 

willing and able to do so. Family considerations, while important to know, do not obviate the 

need to ensure that residents’ wishes are heard and accommodated to the extent possible. 

2. Variations in Medicaid Spending on LTSS by Age and State 

State policy decisions have resulted in a large disparity in the Medicaid HCBS resources 

available to older beneficiaries versus those who are younger. Nationally, older Medicaid

beneficiaries receiving LTSS are much more likely than younger ones to live in institutions. 

About half of the 1.9 million older Medicaid beneficiaries who received LTSS in fiscal year 2011 

lived predominantly in the community. In contrast, 80% of the 1.7 million non-elderly 

beneficiaries did so (Reaves and Musumeci, 2015). Figure 1 provides details about the settings 

in which Medicaid LTSS beneficiaries received services in 2011 by age (Eiken and colleagues, 

September 2015). Figure 2 shows the large state variation in the percentage of adults receiving 

Medicaid LTSS who lived only in institutions in 2011. The percentage of adults aged 65 and 

over receiving Medicaid LTSS in institutions ranged from 12% to 93.9%. Whereas the range for 

those aged 21-64 was 2.6% to 41.5% (Eiken and colleagues, September 2015). Most states 

4 The Minimum Data Set is a resident assessment form, which all Medicare and Medicaid-certified nursing homes 

must use when assessing the needs of their residents. 

5 

 
institutionalized older adults at a rate 2 to 4 times higher than they institutionalized younger 

adults. The range was 1.7 – 14.3 in 2011.5

 States can address these disparities by expanding

the HCBS available to older Medicaid beneficiaries who receive LTSS. 

Figure 1: Percentage of Medicaid LTSS Beneficiaries who Received HCBS by Age Group, 2011 

Source: Eiken and colleagues, September 2015

In fiscal year (FY) 2014, over half (53%) of national Medicaid LTSS spending went for HCBS, with 

the rest going to institutions (Eiken and colleagues, April 2016). These proportions vary 

markedly by state. In FY 2014, 3 states devoted 1/3 or less of their Medicaid LTSS spending to 

HCBS. In contrast, 6 states devoted at least 2/3 of their spending to HCBS (Eiken and 

colleagues, April 2016). Most states have potential to increase the proportion of their Medicaid

LTSS spending devoted to HCBS. 

Expanding HCBS for older adults is particularly advantageous to states because their per capita 

HCBS costs are lower than those of other Medicaid beneficiaries. Older Medicaid beneficiaries’ 

HCBS cost 37.4% less on average than other adults. In FY 2012, Medicaid benefit spending per 

“full-year equivalent enrollee” was $2590 for “aged” beneficiaries who received HCBS, 

compared to $4135 for “disabled” beneficiaries under age 65 (MACPAC, 2015). The disparity

5 Author’s calculations using data from Eiken and colleagues, September 2015. 

6 

 
that older Medicaid beneficiaries experience related to receiving HCBS persists, despite the fact 

that older adults are among the least costly Medicaid HCBS beneficiaries. 

Data Source: Medicaid Analytic eXtract (MAX) Data do not include LTSS beneficiaries enrolled in comprehensive managed care 

plans. Data do not include Arizona, Colorado, the District of Columbia, Hawaii, Kansas, Idaho, Maine, Massachusetts, Ohio, 

Texas, and Wisconsin because MAX does not include 2011 data for these states. Please see Appendix A for data table. 

 

Source: Eiken and colleagues, September 2015

0 10 20 30 40 50 60 70 80 90 100

TN

NM

IN

KY

SD

DE

NH

PA

ND

LA

UT

MD

MT

NE

GA

WY

CT

RI

MS

AL

WV

SC

FL

AR

MI

VA

IA

OK

MO

NY

NJ

VT

NC

MN

NV

IL

WA

CA

OR

AK

Figure 2: Percentage of Adults Receiving Any 

Type of Medicaid LTSS who Lived only in

Institutions, by Age and State, 2011

65+ 21-64

7 
Many states have made substantial progress in providing HCBS to their Medicaid beneficiaries 

who receive LTSS. However, most other states have potential to increase HCBS and likely 

reduce the proportion of nursing home residents who have relatively low care needs. Centers 

for Medicare & Medicaid Services’ (CMS) data from 2014 demonstrate marked variation in the 

proportion of people with low care needs by state. In 9 states, the percentage of nursing home 

residents with no limitations in activities of daily living (ADLs) and mild or no cognitive 

impairment ranged from 3.5-8.4%. In 10 states the percentage ranged from 13.8-21.4%. (CMS, 

2015) 

States have many options for increasing the proportion of older adult Medicaid beneficiaries 

who receive LTSS in their homes and communities. States can do this because they decide: 1) 

within broad federal guidelines, the financial and functional eligibility criteria for LTSS, and 2) 

the range of HCBS which beneficiaries receive and under what circumstances (O’Keeffe and 

colleagues, 2010). For example, states with no Medicaid medically needy program6 for HCBS 

could implement one and enable older adults with costly HCBS to get Medicaid assistance 

before they seek nursing home admission. States could also provide a wide range of flexible 

HCBS to Medicaid beneficiaries and ensure that these services support the families that help 

their loved ones remain at home. 

3. Recommendations for Increased Access to HCBS to Older Adults with Disabilities and 

their Family Caregivers 

Many studies reveal statistically significant risk factors related to older adults’ use of nursing 

homes. These factors include: prior hospitalization, symptom burden, limitations in 3 or more 

ADLs, cognitive impairment, age, and living alone, (Goodwin and colleagues, 2011; Sheppard 

and colleagues, 2013; Allen and colleagues, 2012; Cai and Temkin-Greener, 2015; CastoraBinkley and colleagues, 2014; Stineman and colleagues, 2012; Wang and colleagues, 2013). 

Using this information, states can target these groups and provide them with Medicaid HCBS

before they enter a nursing home and potentially lose their housing in the community. 

In addition to older adults’ health and function, their family caregivers’ stress predicts nursing 

home use. Spillman (2014) found that high caregiver stress led to a 13 percentage point 

increase in the likelihood of nursing home use over 1 year and 20 percentage points over 2 

years. The highest sources of stress for family caregivers were physical and financial. Physical 

stressors may include lifting heavy people or having to stay awake when a person needs help 24 

hours a day. Financial stress may result from having to quit a job to care for a loved one. 

While Medicaid programs cannot serve family caregivers unless beneficiaries receive LTSS, 

states’ can make choices about their Medicaid programs that can help these caregivers. For 

example, states can take advantage of opportunities to pay family caregivers of those Medicaid

beneficiaries who have family they would like to provide services. States can ensure that adult 

day centers and respite services are available to beneficiaries in ways that are helpful to family 

6 Medicaid’s medically needy program is a state option that enables people to subtract their medical and LTSS 

spending from their countable income to qualify for the program.

8 

 
caregivers. States can offer education and helplines to caregivers who have questions about

how to help Medicaid beneficiaries who receive HCBS. 

States can also augment their National Family Caregiver Support Programs (NFCSP), which 

receive funding under the Older Americans Act (OAA) Title IIIE, and connect these programs 

with their Medicaid programs. The NFCSP provides grants to states and territories to help

family care for their loved ones at home by providing: information, access assistance, 

counseling and training, respite care, and supplemental services. Data from the Administration 

for Community Living’s (ACL) national surveys of caregivers of older clients show that OAA 

services, including those provided through the NFCSP, may help caregivers keep their loved 

ones at home (U.S. Department of Health and Human Services, 2016). Nearly 40 percent of 

caregivers reported that their family members would be unable to remain at home without

services and most said that the care recipient would most likely be living in a nursing home or 

assisted living. In another caregiver-support-related study, Washington State analyzed the 

impact of looser eligibility standards for its Family Caregiver Support Program and found that 

the expansion of services was associated with a statistically significant delay in the use of 

Medicaid LTSS (Lavelle 2014). 

The research supports the conclusion that states could make progress in helping older adults 

remain in the community longer, if they target HCBS to older adults at risk of nursing home use 

and provide supports to family caregivers. States could identify the family caregiver(s) of 

Medicaid beneficiaries, and assess and address their unmet needs for information, education, 

and supportive services, especially when following the person-centered service plan involves 

reliance on a family caregiver. 

 

4. Provision of HCBS to Older Adults and its Relationship to their Nursing Home Use

Studies show that increased provision of HCBS is significantly related to lower use of nursing 

homes. This is true for Medicaid-funded HCBS, and separately for OAA-funded HCBS and meals. 

Provision of HCBS likely reduces spending on nursing homes by enabling older adults to stay in 

their communities longer and their family caregivers to potentially experience reduced stress. 

Using national Medicare and MDS data for skilled nursing facility (SNF) users, researchers 

studied the impact of state HCBS spending on dual eligibles7 with nursing home stays exceeding 

100 days. The authors controlled for beneficiaries’ clinical, demographic, socio-economic, and 

geographic characteristics and tested the impact of state SNF and Medicaid HCBS policies and 

spending. Dual eligibles experienced less risk of long stays in nursing homes as their states’ 

Medicaid HCBS spending rose (Rahman and colleagues, 2015). Miller (2011) examined the 

relationship between the percentage of Medicaid LTSS devoted to HCBS and older adults’ use 

of nursing homes, while controlling for their health status and states’ nursing home capacity. 

Over 2000-2007, higher investment in HCBS for older adults was associated with lower use of 

nursing homes. Those states that increase the proportion of their LTSS devoted to HCBS for 

7 Dual eligibles are people who are beneficiaries of Medicare and Medicaid at the same time. 

9 

 
their older Medicaid beneficiaries may well realize decreased use of nursing homes for this 

population.

As spending increases on OAA Title III services, which are primarily HCBS and meals, older 

adults have significantly lower use of nursing homes. Thomas (2014) found that every 1% 

increase in the population aged 65+ receiving OAA III-B personal care was associated with a 

0.8% decrease in the proportion of low care8 residents in nursing homes. Thomas and Mor 

(2013) found that increases in spending on Title III services and the proportion of Medicaid

HCBS funding were associated with decreases in the proportion of low care residents in nursing 

homes. Further analysis found that for every $25 in additional per capita spending on older 

adults’ home-delivered meals there was a decrease in the proportion of low care nursing home 

residents of one percentage point. These studies controlled for states’ Medicaid HCBS 

spending. 

Using data from a sample of dual eligibles researchers found that increased HCBS spending 

reduced risk of nursing home use among beneficiaries with new hip fractures and low incomes. 

Long term nursing home use decreased by 0.17% for each 1 percentage point increase in the 

proportion of the state’s Medicaid LTSS budget allocated to HCBS. (Blackburn and colleagues, 

2015)

Two analyses support the connection between HCBS spending and level of nursing home 

residents’ disability. The higher the proportion of Medicaid LTSS spending devoted to HCBS, 

the higher the functional impairment level of new nursing home admissions and the higher the 

proportion of long-stay residents who return to the community (Walsh, 2006). State level 

Medicaid LTSS spending for 1995–2005 shows that states with extensive, well-established HCBS 

experienced significantly less growth in LTSS spending than states with minimal HCBS (Kaye, 

2009).

This research demonstrates that states with low percentages of Medicaid LTSS funding devoted 

to HCBS could increase such spending and likely reduce older adults’ use of nursing homes and

help ensure that nursing home use is reserved for older adults with higher disability levels. 

Those states that are not already providing a relatively high percentage of LTSS to older adults 

in their homes and communities could consider doing so to reduce nursing home use and serve 

people where most would like to live. 

5. Dementia, Nursing Home Use, and Interventions

Cognitive impairment is a major risk factor for nursing home use and dementia is one of the 

major causes of such impairment among older adults. Thirty-two percent of adults aged 85 and 

older have the condition (Alzheimer’s Association, 2016) and about 60% of nursing home 

residents have moderate or severe cognitive impairment (CMS, 2015). Severity of cognitive and 

physical functional impairment significantly increases the risk of people with dementia using a 

8 Low care residents are those who do not need physical assistance with bed mobility, toileting, transferring, or 

eating and are not classified as needing specialized rehabilitation or clinically complex. Research indicates that low 

care residents have significantly better cognition than other residents (Thomas and Mor, 2013b).

10

 
nursing home. So do behavioral symptoms and family caregiver stress (Gaugler and colleagues, 

2009).

A longitudinal study of older adult participants in the Medicare Alzheimer’s Disease 

Demonstration (1989-1994) examined the risk of nursing home use for people with dementia. 

The participants came from 8 sites across the country and were followed for 3 years. All 

behavioral symptoms predicted nursing home use; the strongest predictors were “danger to 

self or others, forgets what day it is, loses or misplaces things, wakes caregiver up at night, 

hides things, and thinks things are not there.” For all behavioral symptoms, caregiver stress 

affected risk of nursing home use (Gaugler and colleagues, 2011).

Since the major cause of cognitive impairment among older adults is dementia, states could

benefit from using use evidence-based approaches to enable this population to remain in the 

community longer with the help of family caregivers. There is much research that indicates 

how to do this and some examples of states that have developed HCBS systems capable of 

serving those with dementia. 

Interventions for People with Dementia and their Family Caregivers

Tailoring services to the unique needs of older adults with dementia and their family caregivers 

through a “person-centered” approach could help states target their services to the unique 

needs of this high risk population. Person-centered planning is a process directed by the 

person with LTSS needs. The person-centered planning approach identifies the person’s 

strengths, goals, preferences, needs (medical and LTSS), and desired outcomes. The role of 

family, staff, and other team members is to enable and assist the person to identify and access 

a unique mix of paid and unpaid services to meet their needs, and to provide support during 

planning and implementation of a service plan. 

To help states explore a person-centered approach to dementia services for older adults, this 

section of the issue brief focuses on the literature that discusses the effectiveness of specialized 

dementia services. Reilly and colleagues (2015) reviewed case management interventions and 

found that they can: 1) reduce nursing homes and assisted living use, 2) improve quality of life 

for family caregivers, and 3) reduce the caregivers’ use of hospitals and emergency 

departments. Ruiz and Spafford (2015) concluded that multi-component dementia care

interventions that include education, counseling, respite, environmental modification, skills 

training, and case management can reduce caregivers’ stress and improve their quality of life 

and delay institutionalization of the person with dementia. Gitlin and colleagues (2015) 

identified many multi-component interventions that resulted in less caregiver stress and better 

care for the person with dementia. Van’t Leven and colleagues (2013) found similar positive 

results during their review. 

Callahan (2014) describes some common components of quality dementia care interventions. 

These include:

• Obtaining a formal diagnosis

• Treating any preventable causes of cognitive impairment or disability

11
• Educating people with dementia and their families about the condition and how to 

manage its behavioral symptoms

• Referring people with dementia and their families to specialists, if necessary, and 

community-based services

• Regularly assessing medication needs, including those that may enhance cognition

• Discussing care goals and adjusting them over time

• Managing co-morbid symptoms in the context of dementia

Extant blue prints for dementia care can help states improve their HCBS systems. ACL’s

Alzheimer’s Disease Supportive Services Program has fostered dementia capable HCBS systems 

and successfully translated evidence-based interventions into community settings.9 The 

experiences of grantees offer guidance to other states wishing to make progress in this area. In 

addition, CMS has funded several demonstrations of dementia care interventions through its 

Center for Medicare and Medicaid Innovations (CMMI).

Conclusions

Older adult Medicaid beneficiaries who use LTSS more often live in nursing homes than younger 

adults, despite the applicability of the Olmstead decision to everyone with disabilities. The 

situation for older adults and others using Medicaid LTSS varies markedly among the states, 

with many devoting over half of their spending to HCBS and many others doing much less. 

Thus, some states have much room for improving their LTSS systems by providing more HCBS to 

those older adults who prefer to remain at home or in the community.

Older adults most at risk of using nursing homes are those aged 85 and over, or who have 

cognitive impairment, poor health, or have severe disabilities. Studies show that older adults in 

states with more Medicaid and Older Americans Act spending on HCBS are more likely to be 

able to avoid nursing homes and there are effective interventions that could help people with 

dementia and their family caregivers do so. States could take advantage of extant research and

their flexibility under Medicaid to target Medicaid HCBS to those most at risk of needing 

nursing homes and their family caregivers early enough to avoid institutionalization.

Focus on the population with dementia is important because their caregivers experience more 

stress than those caring for people with disabilities who do not have dementia (Kasper and 

colleagues, 2015). Further, several recent literature reviews show that case management, and 

specialized services can reduce caregiver stress and potentially use of nursing homes for this 

population. 

States vary in their approach to providing HCBS and in their functional criteria for nursing home 

care and most could be doing more to promote community living for older adults. States also 

can exert more pressure on nursing homes to honor the preferences residents express to leave 

the facility. In the process, states may realize slower growth in overall LTSS, if they invest 

heavily in Medicaid HCBS (Kaye and colleagues, 2009)

9 More information about this program and its results can be found at: http://www.nadrc.acl.gov/. 

12

 
References: 

1. Allen SM, Lima Jc, Goldscheider FK, Roy J, “ Primary Caregiver Characteristics and 

Transitions in Community-Based Care,” The Journals of Gerontology, Series B: 

Psychological Sciences and Social Sciences, 2012, vol.67, issue3, pgs 362-371.

2. Alzheimer’s Association, 2016 Alzheimer’s Disease Facts and Figures. 

3. Blackburn J, Locher J, Morrisey M, Becker D, Kilgore M, “The Effects of State-level 

Expenditures for Home- and-community-based Services on the Risk of Becoming a Longstay Nursing Home Resident after Hip Fracture,” Osteoporosis International, published 

online on September 23, 2015. 

4. Cai X, Temkin-Greener H, “Nursing Home Admissions among Medicaid HCBS Enrollees,” 

Medical Care, 2015, vol.53, no.7, pgs.566-573.

5. Callahan C, Sachs G, LaMantia K, Unroe K, Arling G, Boustani M, “Redesigning systems fo 

Care for Older Adults with Alzheimer’s Disease,” Health Affairs, 2014, vol.33, no.4, 

pgs.626-632.

6. Castora-Binkley M, Hongdao M, Hyer K, “Predictors of Long-Term Nursing Home 

Placement under Competing Risk: Evidence from the Health and Retirement Study,” 

Journal of the American Geriatric Society, 2014, vol.62, pgs.913-918. 

7. Centers for Medicare and Medicaid Services, Nursing Home Data Compendium 2015 

edition, available at: https://www.cms.gov/Medicare/Provider-Enrollment-andCertification/CertificationandComplianc/NHs.html . 

8. Department of Health and Human Services, Administration for Community Living, 

Justification of Estimates for Appropriations Committee, Fiscal Year 2017. Accessed at: 

http://www.acl.gov/About_ACL/Budget/Index.aspx on May 31, 2016.

9. Department of Justice, Civil Rights Division, Information and Technical Assistance on the 

Americans with Disabilities Act, Accessed at 

http://www.ada.gov/olmstead/olmstead_about , on May 16, 2016. 

10. Eiken S, Sredl K, Burwell B, Saucier P, Medicaid Expenditures for Long-Term Services and 

Supports (LTSS) in FY 2014: Managed LTSS Reached 15 Percent of LTSS Spending, Truven 

Health Analytics, April 2016.

11. Managed LTSS Reached 15 Percent of LTSS Spending

12. Eiken S, Sredl K, Saucier P, Burwell B, Medicaid Long-Term Services and Supports 

Beneficiaries in 2011 Truven Health Analytics, September 2015. 

13. Eiken S, Sredl K, Burwell B, Saucier P, Medicaid Expenditures for Long-Term Services and 

Supports (LTSS) in FY 2013: Home and Community-Based Services were a Majority of 

LTSS Spending, Truven Health Analytics, June 2015.

14. Freedman V, Spillman B, “Disability and Care Needs among Older Americans,” The 

Milbank Quarterly, 2014, vol.92, no.3, pgs. 509-541. 

15. Gaugler J, Wall M, Kate R, Menk J, Khaled S, Johnston J, Schub K, Newcomer R, “Does 

Caregiver burden Mediate the Effects of Behavioral Disturbances on Nursing Home 

Admission?” American Journal of Geriatric Psychiatry, 2011, vol.19, no.6, pgs. 497-506.

13
16. Gaugler J, Fang Y, Krichbaum K, Wyman J, “Predictors of Nursing Home Admission for 

Persons with Dementia,” Medical Care, 2009, vol.47, no.2, pgs.191-198.

17. Gitlin L, Marx K, Stanley I, Hodgson N, “Translating Evidence-based Dementia Caregiving 

Interventions into Practice: State-of-the-Science and next Steps,” The Gerontologist, 

2015, vol.00, no.00, pgs.1-17.

18. Goodwin J, Howrey B, Zhang D, Kuo Y, “Risk of Continued Institutionalization after 

Hospitalization in Older Adults,” Journal of Gerontology: Medical Sciences, 2011, 

vol.66A, no.12, pgs.1321-1327.

19. Kasper J, Freedman V, Spillman B, Wolff J, “The Disproportionate Impact of Dementia on 

Family and Unpaid Caregiving to Older Adults,” Health Affairs, vol.34, no.10, pgs.1642-

1649.

20. Kaye H, LaPlante M, Harrington C, “Do Noninstitutional Long-Term Care Services Reduce 

Medicaid Spending? Health Affairs,2009, vol. 28, no.1, pgs.262-272.

21. Keenan T, Home and Community Preferences of the 45+ Population, AARP, 2010. 

Accessed at: http://www.aarp.org/research/topics/community/info-2014/homecommunity-services-10.html on May 31, 2016.

22. Lavelle B, Mancuso D, Humber A, Felver B, “Expanding Eligibility for the Family Caregiver 

Support Program in State Fiscal Year 2012,” Washington State Department of Social and 

Health Services, Research and Data Analysis Division, April 2014. Accessed at: 

https://www.dshs.wa.gov/sesa/rda/research-reports/expanding-eligibility-familycaregiver-support-program-sfy-2012 on May 31, 2016.

23. Medicaid and CHIP Payment and Access Commission (MACPAC), Medicaid and CHIP 

Data Book, 2015.

24. Miller N, “Relations Among Home-and-community-based Services Investment and 

Nursing Home Rates of Use for Working Age and Older Adults: a State-level Analysis, 

American Journal of Public Health, 2011, vol. 101, no.9, pgs.1735-1741.

25. O’Keeffe J, Saucier P, Jackson B, Cooper R, McKenney E, Crisp S, Moseley C, 

Understanding Medicaid Home and Community Services: a Primer, 2010 edition, 

Department of Health and Human Services, Office of the Assistant Secretary for 

Planning and Evaluation. Available at: https://aspe.hhs.gov/understanding-medicaidhome-and-community-services-primer-2010-edition. 

26. Rahman M, Tyler, D, Thomas K, Grabowski D, Mor V, “Higher Medicare SNF Care 

Utilization by Dual-eligible Beneficiaries: Can Medicaid Long-term Care Policies be the 

Answer?” Health Services Research, 2015, vol.50, no.1, pgs.161-179.

27. Reaves EL, Musumeci MB, Medicaid and Long-term Services and Supports, a Primer. 

Kaiser Family Foundation, December 2015. 

28. Reilly S, Miranda-Castillo C, Malouf R, Hoe J, Toor S, Challis D, Orrell M, “Case 

Management Approaches to Home support for People with Dementia,” The Cochrane 

Collaboration, 2015. 

29. Ruiz S, Spafford M, Research Prioritization Topic Brief: Comparative Effectiveness of 

Multi-component Management Interventions for Community-dwelling Individuals with 

Dementia, PCORI – Patient-centered Outcomes Research Institute, 2015. 

30. Schell W presentation, Data Sharing and Utilization for Civil Rights Compliance and 

Program Enhancement during SAMHSA’s Olmstead Community of Practice National 

14
Webinar, U.S. Department of Health and Human Services Office for Civil Rights, February 

25, 2016.

31. Sheppard K, Brown C, Hearld K, Roth D, Sawyer P, Locher J, Allman R, Ritchie C, 

“Symptom Burden Predicts Nursing Home Admission among Older Adults,” Journal of 

Pain and Symptom Management, 2013, vol.46, no.4, pgs.591-597.

32. Spillman B, Why Do Elders Receiving Informal Home Care Transition to Long Stay Nursing 

Home Residency? 2014, Department of Health and Human Services, Office of the 

Assistant Secretary for Planning and Evaluation. 

33. Stineman M, Xie D, Streim J, Pan Q, Kurichi J, Henry-Sanchez J, Zhang Z, Saliba D, “Home 

Accessibility, Living Circumstances, Stage of Activity Limitation, and Nursing Home Use, 

Archives of Physical and Medical Rehabilitation, 2012, vol.93, pgs.1609-1616.

34. Thomas K, “The Relationship between Older Americans Act In-home Services and Lowcare Residents in Nursing Homes,” Journal of Aging and Health, 2014, vol.26, no.2, 

pgs.250-260.

35. Thomas K, Mor V, “The Relationship between Older Americans Act Title III State 

Expenditures and Prevalence of Low-care Nursing Home Residents,” Health Services 

Research, 2013, vol.48, no.3, pgs.1215-1226.

36. Van’t Leven N, Prick A, Groenewoud J, Roelofs P, de Lange J, Pot A, “Dyadic 

Interventions for Community-dwelling People with Dementia and their Family 

Caregivers: a Systematic Review,” International Psychogeriatrics, 2013, vol25, no.10, 

pgs.1581-1503.

37. Walsh E, Green A, Kaganova Y, Design of Evaluation Options of the System Change 

Grants Final Report, 2006 Research Triangle Institute for the Centers for Medicare & 

Medicaid Services. Available at: https://www.cms.gov/Research-Statistics-Data-andSystems/Statistics-Trends-and-Reports/Reports/Downloads/Walsh.pdf . 

38. Wang S, Shamliyan T, Talley K, Ramakrishnan R, Kane R, “Not Just Specific Diseases: 

Systematic Review of the Association of Geriatric Syndromes with Hospitalization or 

Nursing Home Admission,” Archives of Gerontology and Geriatrics, 2013, vol.57, pgs.16-

26.

15
Appendix A. Data Table for Figure 2, Percentage of Adults Receiving any Type of 

Medicaid LTSS who Lived only in Institutions, by Age and State, 2011

State 21-64 65+

TN 41.5 93.9

NM 25.3 85

IN 32.4 82.1

KY 23.6 74.9

SD 18.6 74

DE 39.7 70.7

NH 10.3 68

PA 18.4 66.6

ND 16.4 65.8

LA 37.9 65.5

UT 31.2 65.5

MD 23.1 64.7

MT 7.7 62.1

NE 23.4 60.4

GA 17.3 59.3

WY 6.8 58.3

CT 17.6 57.1

RI 12.7 56.4

MS 21.6 56.2

AL 6 55.5

WV 15.2 55.2

SC 13.8 54.9

FL 22.9 53.6

AR 26.9 52.7

MI 14 52.7

VA 18.4 51.6

IA 18 50.9

OK 22.8 49.5

MO 13.2 48.4

NY 18.4 46.6

NJ 24.2 44.5

VT 10.5 44.3

NC 13.4 41.9

MN 2.6 37.1

NV 12.6 36.3

IL 20.1 36.1

WA 10.9 25.5

CA 10.2 21.2

16
OR 6.3 19.2

AK 4.6 12

Data Source: Medicaid Analytic eXtract (MAX) Data do not include LTSS beneficiaries enrolled in comprehensive managed care 

plans. 

Data do not include Arizona, Colorado, the District of Columbia, Hawaii, Kansas, Idaho, Maine, Massachusetts, Ohio, Texas, and 

Wisconsin because MAX does not include 2011 data for these states.

Source: Eiken and colleagues, September 2015

17