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.
• Center for PAS,
• University of California, San Francisco
• laplant_at_itsa.ucsf.edu

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Personal Assistance Services

• Help that is provided with tasks essential for
  daily living. These tasks include 5 basic
  ADLS-bathing, dressing, transferring, toileting,
  eating and about a dozen IADLs-shopping, taking
  medications, etc.
• Includes hands-on, supervisory, stand-by help

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Unmet Need

• Person has difficulty performing or is unable to
  perform a daily living activity alone AND
• reports needing help but has none OR
• has some help but reports needing more
• A person can have her needs met with some
  activities and not others or could need more help
  in all activities

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Unmet need a key indicator of the effectiveness
of PAS policies

• The goal of PAS/LTC policy is to meet peoples
  needs in activities of daily living
• The extent and magnitude of unmet need for PAS
  among adults is a key indicator of the
  effectiveness of PAS/LTC policy
• AHRQ Expert Panel (2002) recommended 3 global
  measures of quality of PAS
• 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/futureltc
  00/

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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 expensive woodwork
  effects

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Percent with Unmet NeedPersons needing help in
2 ADLs
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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
  (NHIS on Disability) conducted from 1994-1997 to
  answer these questions by estimating the
  shortfall in hours of help for those with unmet
  needs

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Unmet neednot 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)

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Hours of Help, Unmet Need and Number of ADLs


hours per week

statistically significant difference, plt.05
highly statistically significant difference,
plt.05
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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

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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
• 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

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Advberse Consequences People with unmet need
more likely to

• 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

plt.01 all others plt.05
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People with unmet need more likely to

• 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 cant get to the
  store

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People with unmet need more likely to

• 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
• Helpers strength in bathing and transfer

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People with unmet need more likely to

• Be left alone more than two hours
• To see that as a problem
• Lack reserve helpers

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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

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The possibility of reducing/ eliminating unmet
need

• The cost of addressing unmet need is less than
  prevalence alone 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

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Solutions

• People living alone need more paid hours little
  woodwork effect for them greater adverse
  consequences. Potential cost 1.9 billion (range
  1.2-2.7)
• 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. Potential cost 4.7 billion (range
  2.2-7.1). Respite assistance, direct payment to
  family members/tax credits are possible steps

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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 in reducing adverse consequences
• Speaks to the adequacy of services in the
  community which require improvement for Olmstead,
  MiCassa, Money Follows the Person to work. Unmet
  need must be reduced for deinstitutionalization
  to work.

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• END