The Commonwealth Fund Long-Term Care
Opinion Leader Survey: A First Look
Edward Alan Miller, Ph.D., M.P.A.
Vincent Mor, Ph.D.
Melissa Clark, Ph.D.
Brown University
Purpose
• Assess the views of LTC opinion leaders with regard to the current
state of LTC in the U.S. and potential areas and strategies for reform
• Identify areas of agreement and disagreement among the views of
different types of opinion leaders, including consumer advocates,
provider representatives, public officials, policy experts, and others
• Learn about the networks of LTC opinion leaders and how
knowledge and views regarding important LTC issues diffuse
• Compare the views of LTC care opinion leaders to those of other
health care leaders and the general public
Fifth Annual Building Bridges Long-Term Care Colloquium,
Washington, D.C., June 7, 2008
Outline
Major Activities
• Major Activities
• Respondent Characteristics
• Challenges, Policy, and Reform
• Discussion
• Instrument Construction
• Sample Frame Development
• Survey Administration
Instrument Construction
• Draft Survey Instrument
• Own knowledge, literature review, analyses, 39 in-depth
interviews with leading LTC experts
• Advisory Panel Feedback
• Two teleconferences, 15 panel members
• Cognitive Interviews
• Think aloud, focused-probing interviews, 11 subjects
• Final Review by Commonwealth Fund
Sample Frame Development
• Wave 1 (Purposive Sample): September-November ‘07
• Web-searches, published sources, and databases
• Surveyed 1,954 potential respondents
• Wave 2 (Purposive Sample): January-March ‘08
• Surveyed 117 potential respondents in initial sample but without good email
• Wave 3 (Snowball Sample): January-March ‘08
• 1,996 wave 1 recommendations; 1,104 unique persons
• Surveyed 506 potential respondents not already in the database but for
whom sufficient identifying information was provided
1
Survey Administration
Survey Administration
• Survey Logistics
•
•
•
•
•
• Overall Response Rate
• 44.5% (completed all survey questions)
Entire sample: 2,577 eligible individuals
Via Web-based Format
Pilot Tested
Conducted September 2007-March 2008
First three follow-ups 7 days apart; last follow-up 14 days
• Response Rate by National v. State
• National:
• State:
48.7%
40.6%
• Response Rate by General Role
•
•
•
•
•
• Survey Protocol
• Challenges, Policy/Reform
• Background & Demographics
Consumer:
Provider:
Public Official:
Policy Expert:
Other:
Respondent Characteristics
45.9%
42.2%
38.5%
56.3%
51.5%
Level & General Role
• Level
• National: 47.3%
52.7%
• State:
• General Role
•
•
•
•
•
Percent Years Working in LTC
Years Working in Long-Term Care
45.0%
Consumers:
Providers:
Public Officials:
Policy Experts:
Others:
10.6%
25.9%
31.8%
24.3%
7.3%
Family Members/Friends Served by
Long-Term Care System
11.4%
41.9%
40.0%
35.0%
30.0%
25.0%
17.4%
20.0%
15.0%
13.7%
No
16.1%
Yes
10.8%
10.0%
5.0%
0.0%
5 Years or
Less
6-10 Years 11-15 Years 16-20 Years 21 Years or
More
88.6%
2
Percent with Family Member/Friend in LTC
Types of Providers Serving Family
Members/Friends in LTC System1
90.0%
Gender
84.2%
80.0%
64.9%
70.0%
60.0%
50.0%
39.4%
41.9%
39.0%
40.0%
Male
30.0%
Female
18.5%
20.0%
10.9%
60.6%
10.0%
0.0%
Nursing
Home
Unpaid
Home
Care
Assisted
Living
Adult Day
Care
Other
those with no family members or friends served by long-term care system
Race/Ethnicity
Age
100.0%
92.6%
Percent in Age Group
80.0%
70.0%
60.0%
50.0%
40.0%
30.0%
20.0%
10.0%
1.8%
2.3%
2.0%
2.3%
Hispanic
African
American
Asian
Other
45.0%
40.0%
35.0%
30.0%
25.0%
20.0%
15.0%
10.0%
5.0%
0.0%
40.3%
34.1%
15.3%
7.5%
2.8%
18-34 Years 35-44 Years 45-54 Years 55-64 Years 65 Years or
Older
0.0%
Non-Hispanic
White
2.4%
0.3%
High School
Graduate
Some
College
College
Graduate
Doctoral
Masters
Level Post- Level PostGraduate
Graduate
Work
Work
44.1%
28.7%
12.3%
6.3%
6.8%
1.8%
no
w
16.4%
50.0%
45.0%
40.0%
35.0%
30.0%
25.0%
20.0%
15.0%
10.0%
5.0%
0.0%
tK
38.9%
on
'
42.1%
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45.0%
40.0%
35.0%
30.0%
25.0%
20.0%
15.0%
10.0%
5.0%
0.0%
Income
Percent Household Income
Percent Highest Education
Education
D
Percent in Racial/Ethnic Group
90.0%
$1
50
,0
00
+
1Excludes
Paid
Home
Care
3
Political Party Affiliation
Census Division
30.0%
28.4%
Percent Census Division
54.2%
25.1%
30.0%
20.0%
13.4%
10.0%
3.5%
3.8%
0.0%
Republican
Democrat
Independent Something
Else
Don't Know
20.0%
15.0%
13.8%
10.6%
9.9%
8.6%
9.0%
10.0%
5.1%
4.5%
6.5%
3.8%
5.0%
0.0%
P
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40.0%
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50.0%
25.0%
N
ew
Percent Political Party
60.0%
What are the top three challenges facing LTC?
TOTAL
Challenges
Percent Ranking in Top Three
Workforce
85.1%
Financing
66.4%
Achieving Quality
60.0%
Supply of Home/Community Services
29.3%
Regulation/Enforcement
27.6%
Accelerating Demand
15.8%
Information for Consumers/Families
12.5%
How would you rank the quality provided by the average…
How would you rank the quality provided by the average…
TOTAL
GENERAL ROLE
Percent Ranking ‘Fair’/‘Poor’1
Percent Ranking ‘Fair’/‘Poor’1
Nursing Home
53.3%
Assisted Living Facility
29.2%
Hospital
29.0%
Home Care Agency
24.3%
Adult Day Care Provider
14.2%
Hospice
5.8%
1Response Options: Poor, Fair, Good, Very Good, Excellent, Don’t Know
Consumer
Provider
Public
Official
Policy
Expert
Other
Nursing Home
73.8%
34.0%
48.2% 71.0%
54.8%
Assisted Living Facility
51.6%
20.9%
25.2% 33.7%
28.6%
Hospital
39.3%
26.3%
27.1% 29.0%
32.1%
Home Care Agency
33.6%
14.1%
23.0% 31.5%
28.6%
Adult Day Care
17.2%
7.7%
15.3% 17.2%
17.9%
Hospice
5.7%
4.4%
8.0%
6.0%
4.3%
1Response Options: Poor, Fair, Good, Very Good, Excellent, Don’t Know
4
Policy & Reform
Potential Areas of Reform
•
•
•
•
•
Financing
Linking Individuals and Families to Services
Physical and Organizational Change
Workforce Recruitment and Retention
Quality Improvement and Regulation
How much do you oppose or favor the following
approaches to paying for LTC needs?
TOTAL
Financing
Percent ‘Favor’/‘Strongly Favor’1
Should be a shared responsibility
83.6%
Government programs should cover
most LTC costs
51.4%
Employers should contribute in part
to their employees/retirees LTC costs
50.7%
Individuals should pay most of their
LTC costs
30.6%
Adult children should contribute in
part to their parents LTC costs
24.5%
1Response Options: Strongly Oppose, Oppose, Neutral, Favor, Strongly Favor
How much do you oppose or favor specific
strategies for paying for LTC?
TOTAL
How much do you oppose or favor specific
strategies for paying for LTC?
GENERAL ROLE
Percent ‘Favor’/‘Strongly Favor’1
Percent ‘Favor’/‘Strongly Favor’1
Add a long-term care benefit to
Medicare, financed by a premium
79.8%
Adopt government incentives to
promote greater savings
79.3%
Provide tax incentives for individuals
to purchase LTC insurance
76.6%
Institute Medicaid ‘buy-in’ for nonMedicaid eligible LTC population
59.9%
Provide government incentives to
expand use of reverse mortgages
42.7%
1Response Options: Strongly Oppose, Oppose, Neutral, Favor, Strongly Favor
Consumer
Provider
Public
Official
Policy
Expert
Other
Add a long-term care benefit to
Medicare, financed by a premium
87.7%
80.8%
76.7% 80.3% 76.2%
Adopt government incentives to
promote greater savings
71.3%
86.2%
82.2% 71.3% 79.8%
Provide tax incentives for individuals
to purchase LTC insurance
60.7%
87.5%
79.5% 66.7% 81.0%
Institute Medicaid ‘buy-in’ for nonMedicaid eligible LTC population
63.9%
57.2%
57.0% 64.9% 59.5%
Provide government incentives to
expand use of reverse mortgages
26.2%
50.2%
42.7% 42.7% 40.5%
1Response Options: Strongly Oppose, Oppose, Neutral, Favor, Strongly Favor
5
Linking Individuals/Families to Services
How effective would the following strategies be
for helping people make informed choices?
TOTAL
Percent ‘Effective’/‘Very Effective’1
Formal care coordination services that
explicitly link people to available options
74.1%
Counseling services that help people navigate
the maze of available options
67.0%
Primary care physician assistance in finding
services and making choices
34.0%
Public information campaigns to stimulate
people to plan for future LTC needs
24.3%
Consumer report cards such as CMS’s
NH/HH compare to help people choose
21.8%
1Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective
How effective would the following strategies be
for supporting informal caregivers?
GENERAL ROLE
How effective would the following strategies be
for supporting informal caregivers?
TOTAL
Percent ‘Effective’/‘Very Effective’1
Percent ‘Effective’/‘Very Effective’ 1
Expand care coordination and counseling
services to link people to available support
69.8%
Expand availability of respite services
68.0%
Expand availability of adult day care
64.2%
Allow public payment for family members
providing personal assistance
53.1%
1Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective
Do you feel the LTC system should be
rebalanced away from institutions toward HCBS?
TOTAL
Consumer
Provider
Public
Official
Policy
Expert
Expand care coordination and
counseling services to link people to
available support
79.5%
71.4%
70.4%
64.9% 64.3%
Expand availability of respite services
77.9%
64.0%
71.5%
63.1% 69.1%
Expand availability of adult day care
65.6%
61.6%
67.7%
62.4% 61.9%
Allow public payment for family
members providing personal assistance
68.9%
40.7%
53.2%
58.4% 56.0%
1Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective
How effective would the following strategies be
for rebalancing LTC toward HCBS?
TOTAL
Percent ‘Effective’/
‘Very Effective’ 1,2
16.2%
No
Yes
83.8%
Other
Expand eligibility of HCBS under Medicaid
76.5%
Establish programs that offer a comprehensive
package of HCBS (e.g., PACE)
76.8%
Provide single point of entry through which
individuals may access needed services
71.5%
Increase rate of reimbursement for HCBS
providers
67.1%
Limit supply of nursing home beds
20.9%
1Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective
2Excludes
those who thought system need not be rebalanced away from institutions toward HCBS
6
How strongly do you oppose/favor expansion of
consumer-directed programs (“Cash & Counseling”)?
TOTAL
How strongly do you oppose/favor expansion of
consumer-directed programs (“Cash & Counseling”)?
GENERAL ROLE
27.3%
60.9%
Strongly Oppose/Oppose
Neutral
Strongly Favor/Favor
Percent Favor/Oppose Consumer Direction
11.8%
90.0%
79.5%
80.0%
69.5%
70.0%
60.0%
47.5%
Strongly Oppose/Oppose
50.0%
Neutral
40.0%
31.7%
10.0%
26.2%
23.7%
20.9%
20.0%
Strongly Favor/Favor
31.0%
30.0%
14.8%
10.1%
5.7%
11.9%
6.8%
0.0%
Consumer
Physical & Organizational Change
61.9%
58.9%
Provider
Public
Official
Policy
Expert
Other
How familiar are you with the resident-centered
care or culture change movement in NHs?
TOTAL
17.5%
Not at All/Slighlty Familiar
Moderately Familiar
16.9%
Familiar/Extremely Familiar
65.6%
How familiar are you with the resident-centered
care or culture change movement in NHs?
GENERAL ROLE
What proportion of NHs have fully adopted
culture change or resident-centered care?
TOTAL
Percent Familiar with Culture Change
90.0%
80.0%
5.0%
81.2%
6.9%
75.4%
66.7%
70.0%
63.0%
60.0%
51.3%
Not at All/Slighlty Familiar
50.0%
Moderately Familiar
40.0%
11.5%
10.0%
10% to 25%
26% to 75%
25.5%
30.0%
20.0%
<10%
22.9%
Familiar/Extremely Familiar
10.7%
8.2%
17.3%
19.7%
23.3%
Don't Know
15.5%
17.9%
13.1%
65.2%
0.0%
Consumer Provider
Public
Official
Policy
Expert
Other
7
What are the top three barriers to residentcentered care or culture change in NHs?
TOTAL
What proportion of NHs have fully adopted
culture change or resident-centered care?
GENERAL ROLE
Percent Ranking in Top Three
90.0%
Percent Fully Adopted Culture Change
82.0%
80.0%
75.6%
70.0%
64.4%
64.3%
Cost
69.7%
Senior Leadership Resistance
67.8%
Regulation
63.1%
Care Staff Resistance
52.6%
Size of the Facility
41.2%
Family Resistance
5.6%
60.0%
<10%
49.8%
50.0%
10% to 25%
26% to 75%
40.0%
Don't Know
29.0%
30.0%
27.4%
23.8%
14.8%
20.0%
10.0%
17.6%
15.5%
2.5%
2.2%
5.5%
0.8%
5.7%
6.3%
7.1%
4.7%
1.2%
0.0%
Consumer
Provider
Public Official Policy Expert
Other
Workforce Recruitment & Retention
What are the top three most effective options for
improving recruitment/retention paraprofessionals?
TOTAL
Percent Ranking in Top Three
Promote work environments that value and
respect their contributions
What are the top three most effective options for
increasing the proportion of professional trainees?
TOTAL
90.7%
Increase compensation (wages, benefits)
85.4%
Expand opportunities for career advancement
69.1%
Redesign work processes to give greater autonomy
to paraprofessionals
37.3%
Provide with more structured orientation to job
responsibilities
17.4%
Quality Improvement & Regulation
Percent Ranking in Top Three
Educational assistance programs targeted
at individuals considering geriatrics
79.8%
Increase emphasis on geriatrics in
professional schools’ curricula
78.6%
Higher salaries for geriatric specialists
67.5%
Redirect portion of Medicare GME
funding toward geriatric settings
63.1%
Expansion of online resources and
training in geriatrics
11.0%
8
How well do you think the Federal government is
doing in the regulation of NURSING HOMES?
TOTAL
How well do you think the Federal government
regulates HOME HEALTH CARE AGENCIES?
TOTAL
Percent ‘Well’/‘Very Well’1
Percent ‘Well’/‘Very Well’1
Establish quality standards
33.8%
Establish quality standards
14.9%
Enforce quality standards
15.0%
Enforce quality standards
7.6%
Apply sanctions to facilities with poor inspection
records
12.5%
Apply sanctions to agencies with poor inspection
records
4.5%
Survey residents/families about the care received
8.0%
Survey patients/families about the care received
3.6%
Advise on how to improve care quality through
other mechanisms
7.0%
Advise on how to improve care quality through
other mechanisms
5.1%
Consistently apply regulation across states
6.1%
Consistently apply regulation across states
4.5%
1Response Options: Not at all Well, Slightly Well, Moderately Well, Well, Very Well, Don’t Know
1Response Options: Not at all Well, Slightly Well, Moderately Well, Well, Very Well, Don’t Know
Do you think the regulation of ASSISTED LIVING
FACILITIES in your area should be more stringent?
TOTAL
How effective do you think the following would be
for assuring quality in ASSISTED LIVING?
TOTAL
Percent ‘Effective’/
‘Very Effective’1,2
32.3%
No
Yes
67.7%
Implement quality improvement efforts
56.1%
Mandate collection of resident assessment data
43.8%
Survey assisted living residents and families
41.6%
Regulate through a comprehensive survey and
inspection process
37.8%
Regulate through licensure standards
26.6%
1Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective
2Excludes those who thought the regulation of assisted living facilities need not be more stringent
How effective would the following be for ensuring
and improving the quality of care provided in LTC?
TOTAL
How effective would the following be for ensuring
and improving the quality of care provided in LTC?
GENERAL ROLE
Percent ‘Effective’/
‘Very Effective’1
Percent ‘Effective’/‘Very Effective’1
Consumer
Provider
Public
Official
Policy
Expert
Other
Payment incentives (e.g., pay-for-performance)
53.3%
Establishment of higher staffing requirements
47.7%
Payment incentives (e.g., pay-forperformance)
53.3%
52.5%
60.0%
43.7% 58.3%
Increased payment rates to providers
46.9%
Establishment of higher staffing
requirements
76.2%
32.3%
51.0%
47.3% 47.6%
More aggressive use of state enforcement remedies
and sanctions against low quality providers
43.5%
Increased payment rates to providers
32.0%
64.7%
37.5%
41.9% 63.1%
Provision of technical assistance to improve quality
through the Medicare QIOs
43.4%
More aggressive use of state enforcement
against low quality providers
70.5%
29.6%
52.3%
35.8% 40.5%
Increased availability of consumer report cards
32.7%
Provision of technical assistance to
improve quality through the QIOs
32.0%
49.5%
45.8%
34.4% 58.3%
Increased availability of report cards
41.0%
24.2%
44.4%
21.5% 36.9%
1Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective
1Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective
9
Summary Observations
• Nursing homes have considerably poorer reputations than any other
provider type but especially hospices
• Few believed individuals and families should pay most (or even
share in the cost) of LTC; Half thought employers should contribute
• Adding a long-term care benefit to Medicare financed by premiums
was favored over more particularistic options such as buying into
Medicaid, LTC insurance, or reverse mortgages, particularly by
policy experts and consumers
• Few respondents have any faith in using report cards or other
publicly available information to help consumers select providers;
rather, respondents were far more favorable toward formal care
coordination and counseling services.
Summary Observations
• Care coordination, respite, and adult day services were more popular
for supporting informal caregivers than paying family members to
provide personal assistance, except by consumer advocates
• While nearly all felt that LTC should be rebalanced in favor of
HCBS, virtually no one wanted to do so by limiting the supply of
nursing home beds
• The majority of LTC experts, regardless of type, are familiar with
“culture change” and most think that less than 10% of nursing
homes have adopted it; resistance to culture change is generally
though to be associated with cost and senior leadership resistance
• Most respondents viewed improved work environments and
increased compensation as the keys to recruiting and retaining
paraprofessional workers
Summary Observations
• Most respondents felt that the federal government performs poorly in
regulating nursing homes. In most areas, however, its performance
vis-à-vis home health care was ranked even lower
• A large percentage of respondents felt that assisted living should be
regulated according to the nursing home model (e.g., resident
assessments, inspection surveys, etc.)
• Consumer advocates felt strongly that staffing requirements and more
aggressive regulatory enforcement was the road to improving quality
in LTC; There was little consensus among other respondent types,
though most providers felt increasing payment rates was the key
The Future?
10