Well Being, Loneliness and Living Arrangements

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Well Being, Loneliness and Living Arrangements

• Roger J. Stancliffe1, K. Charlie Lakin2,
• Sarah Taub3,
• Giuseppina Chiri 3, Soo-yong Byun4
• The University of Sydney, Faculty of Health
  Sciences
• Research and Training Center on Community Living,
  University of Minnesota
• Human Services Research Institute
• Michigan State University

2
Background

• Residential services for people with intellectual
  disability have changed substantially since the
  1970s
• Deinstitutionalisation has result in the
  establishment of community living services (e.g.,
  group homes for 4-6 people)
• Dissatisfaction with group homes has seen more
  individualised community living options develop
  including
• Smaller living settings
• Supported living (e.g., living in own home alone
  or with choice of living companions)
• Living with family with support

3
Evaluation

• The benefits of community living (relative to
  institutions) are well established through
  deinstitutionalisation research.
• There has been less research attention given to
  evaluating the benefits of the various approaches
  to community living.

4
Comparisons

• This study looked at self-reported well being of
  adults with intellectual disability living in
• Heavily regulated (ICF/MR) vs more flexible
  (HCBS) programs
• By residence size
• Living with family vs not with family
• By whether the person chose who to live with and
  where to live

5
National Disability Data in Australia

• The Australian Institute of Health and Welfare
  collects the National Minimum Data Set on
  disability services funded under the CSTDA.
• These data include detailed information on
  service provision and service users, but no data
  on individual outcomes.

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Senate Community Affairs Committee Report (2007)

• Funding and operation of the Commonwealth
  State/Territory Disability Agreement
• The Committee concluded
• it is a fundamental flaw in the datasets for
  disability services to not be able to identify if
  the aims of one of the major programs of
  government are being achieved. (p. 73).
• Recommendation 16
• 4.45  That the Commonwealth ensure that outcomes
  data is included in the CSTDA National Minimum
  Dataset.

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Outcome Assessment in the USA

• National Core Indicators (for people with ID/DD)
• http//www.hsri.org/nci/
• NCI data gathered annually with a common
  instrumentation package
• Outcome data collected on a random sample of each
  states service users (minimum 400).
• The current set of NCI performance indicators
  includes approximately 100 consumer, family,
  systemic, cost, and health and safety outcomes.
• Sources of information include
• consumer survey (e.g., well being, empowerment
  and choice issues),
• family surveys (e.g., satisfaction with
  supports),
• provider survey (e.g., staff turnover),
• state systems data (e.g., expenditures,
  mortality, etc.).

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What Is National Core Indicators (NCI)?

• Nationally recognized set of performance and
  outcome indicators for developmental disabilities
  service systems
• Reliable data collection methods and tools
• Baseline and trend data at the state and national
  level
• Benchmarks of performance
• NCI data gathered with a common instrumentation
  package
• Meets accepted standards as being both valid and
  reliable.
• Standard training program for interviewers

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NCI Participating States 2007
NM
TX
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Self-Report Data Only

• Well-being items come from Section I of the NCI
  Consumer Survey.
• This may only be completed by interviewing the
  person receiving services. Due to communication
  difficulties, some service users could not take
  part in the interview.
• Only included HCBS and ICF/MR recipients who were
  judged by interviewers to have given valid and
  consistent interview responses.
• These selection criteria yielded a total of 1885
  adults - predominantly of people with mild or
  moderate ID from 6 participating states.

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Participants from 6 States (Random sample of
adults with ID/DD receiving community services in
each state)
NM
TX
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Satisfaction and Well-being Outcomes

• Loneliness
• Feeling happy
• At Home
• Feeling afraid at home
• Feeling afraid in your neighborhood
• Home staff nice polite
• Liking home

• Work/Day Program
• Work staff nice polite
• Liking work/day program
• Only used in HCBS vs ICF/MR comparisons

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Relation with Personal Characteristics

• Well-being and satisfaction outcomes were
  consistently correlated with the presence of a
  psychiatric diagnosis.
• People with a psychiatric diagnosis may be
  particularly vulnerable to poorer satisfaction
  and sense of well-being.
• In all other comparisons personal characteristics
  controlled statistically.

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Subjective well-being

• People adapt to circumstances, even unfavorable
  circumstances, and their self-reported
  satisfaction and sense of well-being remains
  reasonably stable over time.
• Such subjective outcomes tend to have little or
  no relation to objective outcomes or to objective
  features and quality of service provision
  (Cummins, 2001 Perry Felce, 2005).
• Not clear at the beginning this research whether
  the satisfaction and sense of well-being data
  would be sensitive to differences across programs
  and service settings.

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Concrete, simple questions

• Questions about abstract concepts such as
  satisfaction with services are difficult for
  people with ID/DD to understand and respond to.
• Rather than using abstract, global questions,
  the NCI protocol captures well being by using
  concrete concepts and simple words that are
  readily recognized by people with ID/DD
• Are staff nice to you?
• Are you ever afraid or scared when you are at
  home?

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Loneliness the most widespread problem
17
Conclusion

• Loneliness is a widespread problem requiring
  sustained attention.

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HCBSICF/MR Comparisons

• ICF/MR (Intermediate Care Facilities / Mental
  Retardation) the old institutional regulations
  applied to community settings. Require that
  people to live in a licensed facility (so not
  possible to live in own home or family home).
  Typically older, larger (6 residents) settings.
  Steady decline in the number of these services.
• HCBS (Home and Community Based Services) much
  more flexible funding and regulations. Wide
  range of community services supported including
  living in own home or family home. Typically
  smaller, newer living settings. Marked growth in
  HCBS services.

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HCBSICF/MR Comparisons

• No significant difference between HCBS ICF/MR
  samples on
• Loneliness
• Feeling happy
• At Home
• Feeling afraid at home
• Feeling afraid in your neighborhood
• Work/day program
• Liking work/day program

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Significant difference between HCBS ICF/MR

• Favoring HCBS
• Work staff nice polite
• Liking home
• Although significant, the differences were small.

• Favoring ICF/MR
• Home staff nice polite
• Although significant, the differences were small.

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Comparisons by Residence Size (5 states
residence size data not available for 1 state)

• Contrasted satisfaction and well-being outcomes
  by residence size
• 1 resident with ID/DD
• 2-3
• 4-6
• 7

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Comparisons by Residence SizeWork/day program
items not analyzed as logically residence size is
unrelated to these items.

• No significant difference by residence size on
• Feeling afraid at home
• Feeling afraid in your neighborhood
• Feeling happy
• Home staff polite

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Comparisons by Residence Size

• Better results in smaller residences for
• Loneliness
• Liking home

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Conclusion

• Findings provide further evidence to support the
  initiatives among the states to increase
  opportunities for persons with ID/DD to live in
  smaller, more individualized community homes.

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Family vs. non-family residence Work/day program
items not analyzed as logically living
arrangements are unrelated to these items.

• No difference on
• Feeling afraid in your neighborhood
• Better results for those NOT living with family
  on
• Home staff nice polite

• Better results for those living with family on
• Loneliness
• Feeling afraid at home
• Feeling happy
• Liking home

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Conclusion

• These findings strongly support the growing trend
  to fund family-based services as a means of
  enabling people with ID/DD to remain living with
  their family.
• One possible explanation of lower satisfaction
  about paid staff in the family home is that,
  compared to family members who are constant in
  the persons life, individuals with ID/DD living
  with family may feel less comfortable with paid
  staff who come and go, and change over time.
• This is consistent with the observed trend in
  consumer-directed family-support services toward
  hiring familiar people (family members, friends)
  to provide support.

27
Choice of Living CompanionsWork/day program
items not analyzed as logically living
arrangements are unrelated to these items.

• No difference on
• Feeling afraid at home or in your neighborhood

• Better results for those with choice of living
  companions
• Loneliness
• Feeling happy
• Home staff nice polite
• Liking home

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Choice of Where to LiveWork/day program items
not analyzed as logically living arrangements are
unrelated to these items.

• No difference on
• Loneliness
• Feeling afraid at home or in your neighborhood

• Better results for those with choice of living
  companions
• Feeling happy
• Home staff nice polite
• Liking home

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Conclusions

• Those who chose their living companions (or to
  live alone) and those who chose where to live
  reported consistently better well-being outcomes
  on the majority of indicators.

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Results Summary
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Overall Conclusions

• Findings support the provision of residential
  services in very small settings, with choice of
  where and with whom to live, and to individuals
  living with family.
• Careful attention needs to be given to reducing
  loneliness.
• People with a psychiatric diagnosis may be
  particularly vulnerable to poorer satisfaction
  and sense of well-being.