Unmet Need for Personal Assistance Services

1. Unmet Need for Personal Assistance Services Mitchell P. LaPlante, Ph.D. Steve Kaye, Ph.D. Taewoon Kang, Ph.D. Charlene Harrington, Ph.D. Disability Statistics Center, University of California, San Francisco laplant@itsa.ucsf.edu

2. Unmet need: a key indicator of the effectiveness of PAS policies • The goal of PAS/LTC policy is to meet people’s needs in activities of daily living • The extent and magnitude of unmet need for PAS among adults is a key indicator of the (in)effectiveness of PAS/LTC policy • AHRQ Expert Panel (2002) recommended 3 global measures of quality of LTC • the percentage of persons who are institutionalized • the degree of unmet functional need • percentage of caregivers expressing high levels of burden or stress. Future Directions for Residential Long-Term Care Health Services Research: Summary. Agency for Healthcare Research and Quality, Rockville, MD. April 2002. http://www.ahrq.gov/research/futureltc00/

3. Unmet need prevalence • Literature says that of those with ADL needs from 19.2 percent of adults (Kennedy, 2001) to almost one-third of elders have unmet need (Manton, 1989; US GAO 1988) • These statistics sow fear among policymakers, conjuring the spectre of large woodwork effects

4. Unanswered policy questions • How much more help do people with unmet need require? • How much would that cost to provide? • We use a large nationally representative survey to answer these questions: the NHIS on Disability conducted from 1994-1997

5. About the NHIS-D • Persons asked if they need help in 5 ADLs and 10 IADLs and if they get help • Includes hands-on, supervision, or stand-by help • For each of up to 4 helpers, the number of days of help provided in past two weeks and average hours per day were recorded in Phase 2

6. Unmet need=not enough help • Of 5.4 million adults who need help from another person in 1+ ADLs, 1.5 million need more help than they are getting in ADLs or IADLs, or 26.8 percent • Among the latter, about 300,000 adults have completely unmet ADL needs; 1.2 million need more help than they get • So, it is more common for people to not get all the help they need rather than no help at all (thanks largely to informal helping)

7. Percent with unmet need by number of ADLs

8. Percent with Unmet NeedPersons needing help in 2+ ADLs

9. Percent of Persons with Unmet Need in Each Activity among People with 2+ ADLs (949,000 total)

10. Hours of help by number of ADLs LaPlante et al. (2002). Health Services Research

11. Analytical approach • We can use this survey to estimate how many more hours of help are needed by those with unmet needs • NHIS did not ask how many additional hours of help a person would need • So we compare hours received between those whose needs are met and those whose needs are unmet

12. Analytical approach • We assume that hours for people whose needs are met = needed hours (could be some overutilization) • We observed no difference in hours between people with unmet vs. met needs for those needing help in one ADL but large differences for those needing help with 2 or more ADLs

13. Unmet Need and Number of ADLs * ** hours per week ** *statistically significant difference, p<.05 **highly statistically significant difference, p<.05

14. Two or More ADL needs • Among people with 2 or more ADLs… • Those with unmet needs get approximately 16 hours/week less than those whose needs are met • Among those with one or fewer ADL needs… • Those with unmet needs have the same hours as those whose needs are met

15. Statistical methods • We use multivariate modeling to adjust for population differences that could affect the comparison of hours • Hours data are skewed by a few people with high hours, and some people get no help at all • We used a two-part model: first predict probability of getting help, then, predict number of hours for those who get help

17. Final results • In the end, the modeling doesn’t change the results by very much (crude shortfall is 16.1 hours; after adjustment it is 16.6 hours). The hours go up because people with unmet needs have a somewhat higher level of disability.

18. Unmet need shortfall in hours • People who live with others lack 20 percent of the hours they need • People who live alone lack 44 percent of the hours they need • Different accounting of hours by living arrangement (82 vs. 43 hours) • Cost to eliminate unmet need for those with low incomes: $6.6 billion (95% CI: $3.8-$9.4 billion); $1.9 for those living alone, $4.7 with others

19. Why eliminate/reduce unmet need? • Now we have an understanding of the cost of expanding HCBS • But why should we care about reducing or eliminating unmet need? • Because unmet need is associated with adverse consequences and poor quality of help

20. Unmet need and adverse consequences • 55 questions asked about specific adverse consequences • On 50 of 55 measures, people with unmet needs have a significantly higher frequency of adverse consequences • Very highly statistically significant

21. Feel discomfort from Not bathing enough** Not changing clothes often enough** Going hungry due to lack of help eating** Not being helped toileting as needed** Get burned by hot water Lose weight unintentionally** Get dehydrated** Soil self** Get skin problems from soiling** Have to use bedpan** To be restricted in moving about the home People with unmet need more likely to ** p<.01; all others p<.05

22. Go hungry due to lack of help preparing food** Be unable to follow special diet due to lack of help cooking or shopping** Be unable to eat what they want due to lack of help cooking** Miss meals due to lack of help shopping** Feel distress due to clothes, dishes, and house not being cleaned** Miss doctor appointments** Miss going places** Run out of food because they can’t get to the store** People with unmet need more likely to

23. Fall in past year** Have multiple falls** Be injured by falls, including fractures** Have bedsores and contractures** in past 3 months Be dissatisfied with Scheduled hours and availability of help** Amount of help** Helper willingness to do what is needed** Helper ability to do what is needed** Helper’s strength in bathing and transfer** People with unmet need more likely to

24. People with unmet need more likely to • Be left alone more than two hours** • To see that as a problem** • Lack reserve helpers**

25. Adverse consequences and living arrangements • The incidence of adverse consequences is 32 percent higher for people who live alone than for those who live with others with unmet needs, and in turn is 200 percent higher than those whose needs are met (averaged over all measures) • So, those who live alone with unmet need fare worse than those who live with others with unmet needs, and both fare much worse than those whose needs are met

26. The possibility of reducing/ eliminating unmet need • The cost of addressing unmet need is less than prevalence suggests because people with unmet needs get a large amount of help (thanks to family and friends and to paid help for those who live alone) • We think it is likely that reducing the shortfall in hours associated with unmet need would not only reduce adverse consequences but would in turn provide additional savings from avoiding institutionalization, hospitalization and other health services, and even death

27. Solutions • Differences by living arrangements • ($1.9 billion) People living alone need more formal hours: little “woodwork effect” for them • ($4.7 billion) People living with others may need more formal or informal hours or both: woodwork effects and caregiver issues (burden and stress) need to be considered

28. Reducing Unmet Need Is A Financially Achievable Goal • Among people with 2 or more ADL assistance needs, less than 6 percent of all needed hours are unmet • A relatively small national investment could have large benefits • We hope this encourages people to consider expanding HCBS and to conduct additional research on the costs and benefits of doing so

29. END