Consumers Experience in the Massachusetts Personal Care Attendant PCA Program

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Consumers Experience in the Massachusetts
Personal Care Attendant (PCA) Program

• JSI Research Training Institute, Inc. (JSI)

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Project Background

• MassHealths PCA Program enables elderly and
  disabled Massachusetts residents to avoid
  institutionalization and remain in their homes
• The Personal Care Attendant Quality Home Care
  Workforce Council (the Council) is mandated to
  conduct a performance review and file a report
  every two years
• The Council contracted with JSI in June 2008 to
  conduct data collection as part of the report

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Study Overview

• The following areas were evaluated
• Consumer needs
• Paid and unpaid assistance
• PCA recruitment and retention
• Administrative issues
• Consumer satisfaction
• Consumer recommendations for improving the
  program
• Both qualitative (focus groups and key informant
  interviews) and quantitative (survey) data were
  collected
• Survey data was collected from 381 consumers, 121
  surrogates

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Age of Surveyed Consumers

• Age of Consumers (N502)

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Disability Status

• PCA consumers that responded to the survey
  reported severe, often progressive disabilities
• Their disabilities were often the result of
  health problems or their disabilities themselves
  had major health consequences

Primary Disability that Led to Enrollment in the
PCA Program (N502)
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Health Status
Consumer Health Status by Age (N501)

• The majority of consumers reported fair or poor
  health, with the oldest reporting the worst
  health

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Use of the Program
Consumers PCA Hours per Week (N502)
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PCAs Relationship to Consumers
PCAs Relationship to Consumers When Hired
(N502)
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• 30 of respondents hired a relative as a PCA and
  26 hired a friend
• The PCA-consumer relationship has implications on
  consumer satisfaction, consumer quality of life,
  quality of the PCA-consumer relationship, and PCA
  turnover

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Activities of Daily Living (ADLs) and
Instrumental Activities of Daily Living (IADLs)

• Per the survey, PCAs assist consumers with ADLs
  (such as bathing and dressing) and IADLs (such as
  food shopping and preparing meals)
• Enrollment and allocation of hours is based on a
  persons ability to perform ADLs and IADLs
  independently

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ADLs and IADLs (continued)
Number of ADLs with which consumers have at least
some difficulty (N446)

• Over half of consumers report some difficulty
  with at least five activities of daily living

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Other Forms of PCA Support

• From focus groups and qualitative interviews, it
  is evident that PCAs also provide consumers with
• Friendship, companionship, and other forms of
  social support
• Advocacy in their interactions with physicians
  and other health providers

12
Unpaid Care and Other Services

• From survey, 56 of consumers reported receiving
  unpaid services from family members and friends
• Consumers who reported having a family member PCA
  were more likely to receive unpaid care and
  assistance from family members and friends
• More than one-quarter of consumers also receive
  assistance from other agencies, many from the
  Visiting Nurses Association (VNA)

13
Unmet Need

• 46 of survey respondents reported not having
  enough nighttime hours to meet their needs
• In focus groups, many consumers expressed
  frustration that PCAs are paid neither for
  providing care to consumers who are being treated
  in the hospital nor for assisting consumers
  during doctors appointments
• Consumers expressed concern about the additional
  hours allocated through the re-evaluation process
• 44 of consumers reported on the survey that
  there was time in the past year that a PCA could
  not come as scheduled

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Re-evaluations

• When their conditions change, consumers must
  apply for additional hours and services through
  their PCM agency
• 55 of consumers that responded to the survey
  ever requested more PCA hours of those requests,
  51 were approved

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Hispanic/Latino Consumers

• More than one-fifth of the survey sample (n111)
  identified themselves as Hispanic/Latino or
  completed the interview in Spanish
• 80 of Hispanics/Latinos reported fair or poor
  health, compared to only 56 of
  non-Hispanics/Latinos
• Hispanics/Latinos are more likely to report
  having an inadequate number of daytime and
  nighttime hours than non-Hispanics/Latinos.

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PCA Recruitment
Recruitment Method for Hiring a PCA (N494)
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PCA Turnover

• 61 of respondents reported no turnover of PCAs
  in the past twelve months
• Consumers with 40 PCA hours per week had more
  PCA turnover than those with lt40 hours per week
  (20 v. 14)
• Consumers with stranger/acquaintance PCAs
  experienced more turnover than those with family
  member/friend/neighbor PCAs (20 v. 12)

18
Consumer Satisfaction

• From the focus groups, interviews and surveys,
  consumers consider the most important benefits of
  the PCA program to be
• Increased quality of life
• Relationships with PCAs
• Consumer-directed nature of the program
• Ability to live independently

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Consumer Recommendations

• Higher wages and better benefits for PCAs was the
  most frequent recommendation (29)
• The second most frequently cited recommendation
  was to expand the number of PCA hours available
  and the scope of services covered under the
  program (16)

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Summary and Implications

• As the consumer population ages, greater PCA
  resources will be necessary to meet consumers
  health and functional needs
• PCAs often provide support in areas beyond formal
  responsibilities, by acting as companions and
  advocates in medical settings
• Hispanic/Latino consumers are a vulnerable
  sub-population that may warrant further
  investigation and/or outreach

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Summary and Implications (continued)

• Allowing family members has many benefits for
  consumers, including finding and keeping PCAs
• The rate of turnover was not as critical a
  problem as originally anticipated and was less of
  an issue than in other long-term care settings
• Overall, consumers were highly appreciative of
  the services delivered through the program

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Policy Implications

• Changing federal regulations to expand the scope
  of services by allocating PCA hours for
  accompanying consumers to doctors' appointments
  and allowing PCAs to assist consumers in the
  hospital would provide better, more consistent,
  care to consumers
• The program could help consumers by facilitating
  their receipt of other State services or
  coordinating the way in which PCA and other
  services are provided

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Acknowledgements

• JSI would like to thank
• Jack Boesen, Executive Director of the PCA
  Quality Home Care Workforce Council
• Jean McGuire, Assistant Secretary of the Office
  of Disability Policy and Programs
• Lois Aldrich, Director of Community Services for
  the MassHealth Office of Long Term Care
• Paul Spooner, Joe Tringali, and Eileen Brewster
  of the PCA Quality Home Care Workforce Council
  Board
• Community Economics Corporation (CEC)

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Contact Information

• For more information, please contact
• Jaya Mathur
• [phone]
• jmathur_at_jsi.com