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 Fifth Annual Building Bridges Long-Term Care Colloquium, Washington, D.C., June 7, 2008 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 Outline • Major Activities • Respondent Characteristics • Challenges, Policy, and Reform • Discussion Major Activities • 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 Survey Administration • Survey Logistics • • • • • 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 • Survey Protocol • Challenges, Policy/Reform • Background & Demographics Survey Administration • Overall Response Rate • 44.5% (completed all survey questions) • Response Rate by National v. State • National: • State: 48.7% 40.6% • Response Rate by General Role • • • • • Consumer: Provider: Public Official: Policy Expert: Other: 45.9% 42.2% 38.5% 56.3% 51.5% Respondent Characteristics Level & General Role • Level • National: 47.3% • State: 52.7% • General Role • • • • • Consumers: Providers: Public Officials: Policy Experts: Others: 10.6% 25.9% 31.8% 24.3% 7.3% Percent Years Working in LTC Years Working in Long-Term Care 45.0% 41.9% 40.0% 35.0% 30.0% 25.0% 17.4% 20.0% 15.0% 13.7% 16.1% 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 Family Members/Friends Served by Long-Term Care System 11.4% No Yes 88.6% Percent with Family Member/Friend in LTC Types of Providers Serving Family Members/Friends in LTC System1 90.0% 84.2% 80.0% 64.9% 70.0% 60.0% 50.0% 41.9% 40.0% 30.0% 18.5% 20.0% 10.9% 10.0% 0.0% Nursing Home 1Excludes 39.0% Paid Home Care Unpaid Home Care Assisted Living Adult Day Care those with no family members or friends served by long-term care system Other Gender 39.4% Male Female 60.6% Race/Ethnicity 100.0% 92.6% Percent in Racial/Ethnic Group 90.0% 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 0.0% Non-Hispanic White Percent in Age Group Age 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 Percent Highest Education Education 45.0% 40.0% 35.0% 30.0% 25.0% 20.0% 15.0% 10.0% 5.0% 0.0% 42.1% 38.9% 16.4% 2.4% 0.3% High School Graduate Some College College Graduate Masters Doctoral Level Post- Level PostGraduate Graduate Work Work D on ' tK no w $1 50 ,0 00 + 50.0% 45.0% 40.0% 35.0% 30.0% 25.0% 20.0% 15.0% 10.0% 5.0% 0.0% $5 0, 00 1$7 5, 00 $7 0 5, 00 1$1 00 ,0 $1 00 00 ,0 01 -$ 15 0, 00 0 <$ 50 ,0 00 Percent Household Income Income 44.1% 28.7% 12.3% 6.3% 6.8% 1.8% Political Party Affiliation Percent Political Party 60.0% 54.2% 50.0% 40.0% 25.1% 30.0% 20.0% 13.4% 10.0% 3.5% 3.8% 0.0% Republican Democrat Independent Something Else Don't Know ou A tla nt ic tra l ra l U ni d en ed 8.6% tif i ifi c ac 4.5% 5.1% P 30.0% th W C es en tS tra ou l th C en tra l M ou nt ai n tS as en en t nt ic d 9.9% E ou th C C At la la n 10.6% S th or th tN or W es tN as ng 15.0% E E dl e ew M id N Percent Census Division Census Division 28.4% 25.0% 20.0% 13.8% 10.0% 9.0% 6.5% 5.0% 3.8% 0.0% Challenges What are the top three challenges facing LTC? TOTAL 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… TOTAL 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 How would you rank the quality provided by the average… GENERAL ROLE Percent Ranking ‘Fair’/‘Poor’1 Consumer Provider Public Official 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% 1Response Options: Poor, Fair, Good, Very Good, Excellent, Don’t Know Policy Expert 4.3% Other 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 Financing How much do you oppose or favor the following approaches to paying for LTC needs? TOTAL 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 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 How much do you oppose or favor specific strategies for paying for LTC? GENERAL ROLE Percent ‘Favor’/‘Strongly Favor’1 Consumer Provider Public Official 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 Policy Expert Other 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? TOTAL 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 How effective would the following strategies be for supporting informal caregivers? GENERAL ROLE Percent ‘Effective’/‘Very Effective’1 Consumer Provider Public Official Policy Expert Other 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 Do you feel the LTC system should be rebalanced away from institutions toward HCBS? TOTAL 16.2% No Yes 83.8% How effective would the following strategies be for rebalancing LTC toward HCBS? TOTAL Percent ‘Effective’/ ‘Very Effective’ 1,2 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 How strongly do you oppose/favor expansion of consumer-directed programs (“Cash & Counseling”)? TOTAL 11.8% 27.3% 60.9% Strongly Oppose/Oppose Neutral Strongly Favor/Favor Percent Favor/Oppose Consumer Direction How strongly do you oppose/favor expansion of consumer-directed programs (“Cash & Counseling”)? GENERAL ROLE 90.0% 79.5% 80.0% 69.5% 70.0% 61.9% 58.9% 60.0% 47.5% 50.0% Strongly Oppose/Oppose Neutral 40.0% 31.7% Strongly Favor/Favor 31.0% 30.0% 23.7% 20.9% 20.0% 10.0% 26.2% 14.8% 10.1% 5.7% 11.9% 6.8% 0.0% Consumer Provider Public Official Policy Expert Other Physical & Organizational Change 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% 65.6% Familiar/Extremely Familiar How familiar are you with the resident-centered care or culture change movement in NHs? GENERAL ROLE Percent Familiar with Culture Change 90.0% 81.2% 80.0% 75.4% 66.7% 70.0% 63.0% 60.0% 51.3% Not at All/Slighlty Familiar 50.0% Moderately Familiar 40.0% Familiar/Extremely Familiar 25.5% 30.0% 11.5% 20.0% 10.0% 10.7% 8.2% 17.3% 19.7% 23.3% 15.5% 17.9% 13.1% 0.0% Consumer Provider Public Official Policy Expert Other What proportion of NHs have fully adopted culture change or resident-centered care? TOTAL 5.0% 6.9% <10% 10% to 25% 22.9% 26% to 75% Don't Know 65.2% What proportion of NHs have fully adopted culture change or resident-centered care? GENERAL ROLE 90.0% Percent Fully Adopted Culture Change 82.0% 80.0% 75.6% 70.0% 64.4% 64.3% 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% 5.5% 0.8% 2.5% 5.7% 6.3% 2.2% 7.1% 4.7% 1.2% 0.0% Consumer Provider Public Official Policy Expert Other What are the top three barriers to residentcentered care or culture change in NHs? TOTAL Percent Ranking in Top Three 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% 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 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% What are the top three most effective options for increasing the proportion of professional trainees? TOTAL 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% Quality Improvement & Regulation How well do you think the Federal government is doing in the regulation of NURSING HOMES? TOTAL Percent ‘Well’/‘Very Well’1 Establish quality standards 33.8% Enforce quality standards 15.0% Apply sanctions to facilities with poor inspection records 12.5% Survey residents/families about the care received 8.0% Advise on how to improve care quality through other mechanisms 7.0% Consistently apply regulation across states 6.1% 1Response Options: Not at all Well, Slightly Well, Moderately Well, Well, Very Well, Don’t Know How well do you think the Federal government regulates HOME HEALTH CARE AGENCIES? TOTAL Percent ‘Well’/‘Very Well’1 Establish quality standards 14.9% Enforce quality standards 7.6% Apply sanctions to agencies with poor inspection records 4.5% Survey patients/families about the care received 3.6% Advise on how to improve care quality through other mechanisms 5.1% Consistently apply regulation across states 4.5% 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 32.3% No Yes 67.7% How effective do you think the following would be for assuring quality in ASSISTED LIVING? TOTAL Percent ‘Effective’/ ‘Very Effective’1,2 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 Percent ‘Effective’/ ‘Very Effective’1 Payment incentives (e.g., pay-for-performance) 53.3% Establishment of higher staffing requirements 47.7% Increased payment rates to providers 46.9% More aggressive use of state enforcement remedies and sanctions against low quality providers 43.5% Provision of technical assistance to improve quality through the Medicare QIOs 43.4% Increased availability of consumer report cards 32.7% 1Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective How effective would the following be for ensuring and improving the quality of care provided in LTC? GENERAL ROLE Percent ‘Effective’/‘Very Effective’1 Consumer Provider Public Official Policy Expert Other Payment incentives (e.g., pay-forperformance) 53.3% 52.5% 60.0% 43.7% 58.3% Establishment of higher staffing requirements 76.2% 32.3% 51.0% 47.3% 47.6% Increased payment rates to providers 32.0% 64.7% 37.5% 41.9% 63.1% More aggressive use of state enforcement against low quality providers 70.5% 29.6% 52.3% 35.8% 40.5% 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 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 visà-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?