1. 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

2. 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

3. Outline Major Activities Respondent Characteristics Challenges, Policy, and Reform Discussion

4. Major Activities Instrument Construction Sample Frame Development Survey Administration

5. 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

6. 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

7. 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

8. Survey Administration Overall Response Rate 44.5% (completed all survey questions) Response Rate by National v. State National: 48.7% State: 40.6% Response Rate by General Role Consumer: 45.9% Provider: 42.2% Public Official: 38.5% Policy Expert: 56.3% Other: 51.5%

9. Respondent Characteristics

10. Level & General Role Level National: 47.3% State: 52.7% General Role Consumers:10.6% Providers:25.9% Public Officials:31.8% Policy Experts:24.3% Others: 7.3%

11. Years Working in Long-Term Care

12. Family Members/Friends Served by Long-Term Care System

13. Types of Providers Serving Family Members/Friends in LTC System 1 1 Excludes those with no family members or friends served by long-term care system

14. Gender

15. Race/Ethnicity

16. Age

17. Education

18. Income

19. Political Party Affiliation

20. Census Division

21. Challenges

22. What are the top three challenges facing LTC? TOTAL Percent Ranking in Top Three Workforce85.1% Financing66.4% Achieving Quality60.0% Supply of Home/Community Services 29.3% Regulation/Enforcement27.6% Accelerating Demand15.8% Information for Consumers/Families12.5%

23. How would you rank the quality provided by the average… TOTAL Percent Ranking ‘Fair’/‘Poor’ 1 Nursing Home53.3% Assisted Living Facility29.2% Hospital29.0% Home Care Agency24.3% Adult Day Care Provider14.2% Hospice5.8% 1 Response Options: Poor, Fair, Good, Very Good, Excellent, Don’t Know

24. How would you rank the quality provided by the average… GENERAL ROLE Percent Ranking ‘Fair’/‘Poor’ 1 ConsumerProviderPublic Official Policy Expert Other Nursing Home73.8%34.0%48.2%71.0%54.8% Assisted Living Facility51.6%20.9%25.2%33.7%28.6% Hospital39.3%26.3%27.1%29.0%32.1% Home Care Agency33.6%14.1%23.0%31.5%28.6% Adult Day Care17.2%7.7%15.3%17.2%17.9% Hospice5.7%4.4%8.0%4.3%6.0% 1 Response Options: Poor, Fair, Good, Very Good, Excellent, Don’t Know

25. Policy & Reform

26. Potential Areas of Reform Financing Linking Individuals and Families to Services Physical and Organizational Change Workforce Recruitment and Retention Quality Improvement and Regulation

27. Financing

28. 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 responsibility83.6% 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% 1 Response Options: Strongly Oppose, Oppose, Neutral, Favor, Strongly Favor

29. 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 non- Medicaid eligible LTC population 59.9% Provide government incentives to expand use of reverse mortgages 42.7% 1 Response Options: Strongly Oppose, Oppose, Neutral, Favor, Strongly Favor

30. How much do you oppose or favor specific strategies for paying for LTC? GENERAL ROLE Percent ‘Favor’/‘Strongly Favor’ 1 ConsumerProviderPublic 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 non- Medicaid 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% 40.5% 1 Response Options: Strongly Oppose, Oppose, Neutral, Favor, Strongly Favor

31. Linking Individuals/Families to Services

32. 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% 1 Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective

33. 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 services68.0% Expand availability of adult day care64.2% Allow public payment for family members providing personal assistance 53.1% 1 Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective

34. How effective would the following strategies be for supporting informal caregivers? GENERAL ROLE Percent ‘Effective’/‘Very Effective’ 1 ConsumerProviderPublic 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 services77.9%64.0%71.5%63.1%69.1% Expand availability of adult day care65.6%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% 1 Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective

35. Do you feel the LTC system should be rebalanced away from institutions toward HCBS? TOTAL

36. How effective would the following strategies be for rebalancing LTC toward HCBS? TOTAL Percent ‘Effective’/ ‘Very Effective’ 1,2 Expand eligibility of HCBS under Medicaid76.5% 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 beds20.9% 1 Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective 2 Excludes those who thought system need not be rebalanced away from institutions toward HCBS

37. How strongly do you oppose/favor expansion of consumer-directed programs (“Cash & Counseling”)? TOTAL

38. How strongly do you oppose/favor expansion of consumer-directed programs (“Cash & Counseling”)? GENERAL ROLE

39. Physical & Organizational Change

40. How familiar are you with the resident-centered care or culture change movement in NHs? TOTAL

41. How familiar are you with the resident-centered care or culture change movement in NHs? GENERAL ROLE

42. What proportion of NHs have fully adopted culture change or resident-centered care? TOTAL

43. What proportion of NHs have fully adopted culture change or resident-centered care? GENERAL ROLE

44. What are the top three barriers to resident- centered care or culture change in NHs? TOTAL Percent Ranking in Top Three Cost69.7% Senior Leadership Resistance67.8% Regulation63.1% Care Staff Resistance52.6% Size of the Facility41.2% Family Resistance5.6%

45. Workforce Recruitment & Retention

46. 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 advancement69.1% Redesign work processes to give greater autonomy to paraprofessionals 37.3% Provide with more structured orientation to job responsibilities 17.4%

47. 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 specialists67.5% Redirect portion of Medicare GME funding toward geriatric settings 63.1% Expansion of online resources and training in geriatrics 11.0%

48. Quality Improvement & Regulation

49. How well do you think the Federal government is doing in the regulation of NURSING HOMES? TOTAL Percent ‘Well’/‘Very Well’ 1 Establish quality standards33.8% Enforce quality standards15.0% Apply sanctions to facilities with poor inspection records 12.5% Survey residents/families about the care received8.0% Advise on how to improve care quality through other mechanisms 7.0% Consistently apply regulation across states6.1% 1 Response Options: Not at all Well, Slightly Well, Moderately Well, Well, Very Well, Don’t Know

50. How well do you think the Federal government regulates HOME HEALTH CARE AGENCIES? TOTAL Percent ‘Well’/‘Very Well’ 1 Establish quality standards14.9% Enforce quality standards7.6% Apply sanctions to agencies with poor inspection records 4.5% Survey patients/families about the care received3.6% Advise on how to improve care quality through other mechanisms 5.1% Consistently apply regulation across states4.5% 1 Response Options: Not at all Well, Slightly Well, Moderately Well, Well, Very Well, Don’t Know

51. Do you think the regulation of ASSISTED LIVING FACILITIES in your area should be more stringent? TOTAL

52. 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 efforts56.1% Mandate collection of resident assessment data43.8% Survey assisted living residents and families41.6% Regulate through a comprehensive survey and inspection process 37.8% Regulate through licensure standards26.6% 1 Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective 2 Excludes those who thought the regulation of assisted living facilities need not be more stringent

53. 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 requirements47.7% Increased payment rates to providers46.9% 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 cards32.7% 1 Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective

54. How effective would the following be for ensuring and improving the quality of care provided in LTC? GENERAL ROLE Percent ‘Effective’/‘Very Effective’ 1 Cons- umer ProviderPublic Official Policy Expert Other Payment incentives (e.g., pay-for- performance) 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 providers32.0%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 cards41.0%24.2%44.4%21.5%36.9% 1 Response Options: Not at all Effective, Slightly Effective, Moderately Effective, Effective, Very Effective

55. 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.

56. 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

57. 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

58. The Future?