1. 2017 Consumer Voice Annual Conference November 6, 2017
Promoting Community Living for Older Adults Who Need Long-term Services & Supports (LTSS)
2017 Consumer Voice Annual Conference
November 6, 2017

2. Summarizes the evidence about the effects of providing more HCBS
Jane Tilly, DrPH
Senior Policy Advisor, Center for Policy Evaluation Administration for Community Living, USHHS
Promoting Community Living for Older Adults Who Need Long-term Services and Supports (PDF, 297KB):
Describes how states may be able to reduce older adults’ use of nursing homes by providing more HCBS
Summarizes the evidence about the effects of providing more HCBS
Offers recommendations for states’ consideration
Describes the special circumstances of older adults with dementia.

3. Institutionalization among Older Adults
Supreme Court held that unjustified isolation of people with disabilities violates Americans with Disabilities Act.
Olmstead applies to people of all ages who need LTSS, including those acquiring disability at age 65+.
High rate of institutionalization older Medicaid LTSS beneficiaries 15+ years after the Olmstead decision.

4. % Medicaid LTSS Beneficiaries w/ HCBS, by age in 2011
Source: 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.

5. LTSS Disparities
~50% of Medicaid beneficiaries 65+ receiving LTSS live in their homes or communities, where they prefer to be.
80% of beneficiaries receiving LTSS <65 live in community.
Disparity exists despite HCBS costs being lower on average for beneficiaries 65+.

6. State Flexibility to Help 65+ Live in Community
Many states could do more to comply with Olmstead because they have a great deal of control over Medicaid LTSS.
States operate Medicaid under broad federal guidelines. They determine the:
financial and functional eligibility criteria for LTSS
range and amount of HCBS that beneficiaries can receive and under what circumstances.
States help ensure NF residents have information when they want to leave a nursing home.

7. Nursing Homes Residents’ Rights: Access to Assistance (1)
HHS’ Office for Civil Rights examined data from the Minimum Data Set’s “Section Q,” which asks people if they want to learn more about living outside the NF.
NFs must tell a state-designated “local contact agency” about residents who want more information about leaving and the agencies must contact residents and provide information about HCBS options.
50,000 nursing home residents requesting assistance from over 7,000 nursing homes never received a referral to a local agency that could help them.

8. Nursing Homes Residents’ Rights: Access to Assistance (2)
States must make available designated “local contact agencies” to provide information to NF residents about living in the community.
“Local contact agencies” may be ADRCs, AAAs, LTC Ombudsmen, CILs, others with required expertise.
Family considerations, while important, do not cancel out residents’ wishes and accommodation of them.

9. Medicaid Spending on LTSS by Age and State
States take varying approaches to implementing LTSS policies.
Result is variation in the Medicaid HCBS resources available to beneficiaries 65+.
FY 2014, over half 53% of national Medicaid LTSS spending went for HCBS, with the rest going to institutions; marked state variation.

10. 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.

11. State Variation in % of NH Residents Needing Assistance, 2014
Large state variation in % of NF residents with no ADL limitation and little or no cognitive impairment.
In 9 states, % of NF residents ranged from %.
In 10 states that percentage ranged from %.
Expanding HCBS for 65+ can be an advantage; their HCBS cost 37.4% less on average than other adults.

12. Helping 65+ Live in the Community
Those at risk of NF use: prior hospitalization, symptom burden, limitations in 3 or more ADLs, cognitive impairment, age, and living alone.
States can help older adults by providing them with Medicaid HCBS before they enter a nursing home and potentially lose their housing in the community.

13. Results of HCBS Provision
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.
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.

14. Dementia, Nursing Home Use, and Interventions
Cognitive impairment is a risk factor for nursing home use and dementia is one of the major causes among older adults.
32% of adults aged 85 and older have dementia and about 60% of nursing home residents have moderate or severe cognitive impairment.
Severe cognitive and physical functional impairment increases the risk of people with dementia using a nursing home. So do behavioral symptoms and family caregiver stress.

15. Role of Caregiver Stress in Institutionalization
Family caregivers’ stress predicts nursing home use.
High caregiver stress led to a 13% increase in the likelihood of nursing home use over 1 year and 20% over 2 years.
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.

16. Dementia Interventions
Specialized dementia services are effective with individuals with dementia.
Case management interventions:
reduce nursing home and assisted living use
improve quality of life for family caregivers
reduce the caregivers’ use of hospitals and emergency departments.
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.

17. Common Elements of Dementia Care Interventions
Common components of quality dementia care interventions include:
Obtaining a formal diagnosis
Treating any preventable causes of cognitive impairment or disability
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

18. Offering adult day centers and respite services to beneficiaries.
States Can Consider Assisting the Caregivers of Medicaid LTSS Beneficiaries
Paying family caregivers of Medicaid beneficiaries who wish to provide services.
Offering adult day centers and respite services to beneficiaries.
Offering education and helplines to caregivers of Medicaid HCBS beneficiaries.

19. National Family Caregiver Support Program (NFCSP)
Augmenting National Family Caregiver Support Program (NFCSP) and connecting it with Medicaid.
OAA funds the NFCSP, which provides state and territorial grants to help families provide care through services: information, access to assistance, counseling and training, respite care, and supplemental services.
40% of NFCSP caregivers reported that their family members would be unable to remain at home without services.
Washington State analyzed the impact of loosening eligibility standards for its Family Caregiver Support Program; this was associated with a statistically significant delay in the use of Medicaid LTSS.

20. Summary (1)
65+ Medicaid beneficiaries who use LTSS more often live in nursing homes than younger adults.
Marked variation in states’ % of older adults in NFs. Some states > 50%; others much less.
LTSS systems can be improved by providing more HCBS to older adults who prefer to live in the community.

21. Summary (2)
Older adults in states with more Medicaid and Older Americans Act spending on HCBS are more likely to be able to avoid nursing homes.
Helping individuals with dementia is feasible because research shows that case management, and specialized services can reduce caregiver stress and potential nursing home use.

22. Thank You!
Jane Tilly, DrPH Senior Policy Advisor, Aging Administration for Community Living