Participation: Lessons from the past, hope for the future

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Participation Lessons from the past, hope for
the future

• Roger J. Stancliffe
• Centre for Developmental Disability Studies,
  University of Sydney, and
• Research and Training Center on Community Living,
  University of Minnesota

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Participation

• An individual enjoys the benefits of society by
  participating in that society.
• In this paper I argue that
• Participation in all aspects of life is essential
  for a full life.
• Skills and independence are acquired and
  maintained through consistent participation and
  practice in real-life settings.
• Support should be needs-based because too little
  and too much support can both be detrimental.

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Question

• What support is needed to facilitate
  participation so that people can enjoy a full
  life?

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Research on Participation

• Milder disability is associated with higher
  levels of participation
• Different living arrangements are associated with
  differing levels of participation
• Why is this so?

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Ability, independence and participation

• People with milder disability generally need less
  support and can do more things independently.
• Being independent is related to higher levels of
  participation (and self-determination), probably
  because you dont need to wait for assistance
  before participating.

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Independence and participation(unpublished data
from the Minnesota Longitudinal Study)

• Participants who undertook one or more activities
  by themselves were contrasted with individuals
  who participated in all activities with support.
• Those who participated independently took part in
  significantly more community and more domestic
  activities (even after differences in ability
  were taken into account statistically).

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Independence and participation(unpublished data
from the Minnesota Longitudinal Study)

• For specific activities, people who participated
  independently in that activity did so
  significantly more often.
• ACTIVITY INDEPENDENT WITH SUPPORT
• Hobbies 18.8
  7.8
• Magazines/ 18.8
  0.0
• books

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Independence and participation(Stancliffe, Dew,
Gonzalez Atkinson, 2001)

• In a study of Australian group homes, Stancliffe
  et al. (2001) found independent community
  participation was linked to significantly more
  frequent participation.
• ACTIVITY INDEPENDENT WITH SUPPORT
• Small, local shops 31.8
  16.3
• Public transport 25.4
  12.1

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Why is participation important
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John OBriens Five Accomplishments

• Presence and participation in community life.
• Developing and maintaining relationships with
  friends and family.
• Making choices and expressing preferences.
• Gaining personal dignity and being afforded
  respect.
• Exercising and developing personal competence.

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A Fulfilling Life

• A person can only take the journey down the paths
  defined by the 5 accomplishments by being engaged
  in activities.

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Participation is also important because

• Independence and competence are supported by
  regular opportunities to apply ones skills, so
  day-to-day participation is essential.

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Supermarket Shopping

• Levine and Langness (1985) found competence at
  supermarket shopping was unrelated to age, sex,
  IQ, or amount of training.
• The most competent shoppers were those whose
  circumstances required them to shop independently
  as adults.

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Skills and Independent Living

• Lozano (1993) examined the the relationship
  between
• independent living training
• independent living skills
• success at independent living
• Lozano analysed data on 2500 people living
  independently in California over an 8 year period

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Lozano (1993) Findings

• Lozano looked at changes in independent living
  skills over time and compared those whose skills
  improved or stayed the same with those whose
  skills declined
• People who improved or maintained their skills
  were more likely to continue living in their own
  homes

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Lozano (1993) Findings

• Individuals who received support services were
  58 more likley to continue living in their own
  home (compared to those with no support
  services).
• But the amount of independent living services was
  not associated with improving or maintaining
  independent living skills

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Lozano (1993) Findings

• Lozano found that the real experience of
  independent living accounted for improvement or
  maintenance of skills, not the amount of
  independent living skills training.
• Effective support involved social, emotional and
  practical support, not a predominant focus on
  skills training.

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Conclusions

• This challenges the skills-training/readiness
  approach to independent living.
• Lozano concluded that the question for
  individuals with developmental disabilities
  should, therefore, not be whether they have the
  skills to live on their own, but rather, how the
  systems created to serve them can provide the
  necessary supports to enable them to do so

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Conclusions

• Lozano criticised skills-based screening as a
  means of determining who should live
  independently, and recommended that emphasis
  should instead be on an individuals desire to
  live in their own home
• the longer the move to independent living is
  delayed, the longer individuals are denied a
  critical opportunity to acquire skills that are
  derived from practical experience

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Opportunities and Financial Decision Making

• In the UK, Suto, Clare, Holland, and Watson
  (2005) showed that
• basic financial understanding
• and
• everyday decision-making opportunities
• were both crucial for maximising financial
  decision-making abilities.

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Choice

• Stancliffe (1997) found that individuals living
  in settings with less staff presence, such as
  semi-independent living, (i.e., with periods with
  no staff present) exercised more choice.
• This finding has been replicated by studies in
  the US and UK.

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Semi-independent living and staff support

• Stancliffe (2005) and Stancliffe Keane (2000)
  found better outcomes in semi-independent
  settings than group-homes, particularly on
  outcomes involving independent participation.
• Yet individuals living semi-independently receive
  vastly less staff support than those from group
  homes.

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Semi-independent living and staff support

• Stancliffe (2005) argued that because of frequent
  staff absence, semi-independent living not only
  provided opportunities for independent
  participation, it demanded such participation.
• The opportunities provided by day-to-day
  practical experience were crucial to promoting
  independence.

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Semi-independent living in England

• Like Australia, the UK has overused fully staffed
  group homes as the major type of community living
  provision. Curtis and Netten (2005) estimated
  the average cost per place as 52,884
  (Au130,063).
• UK research suggests that the level of staff
  support and the resulting service cost are not
  needs based (i.e., people with more severe
  disability do not necessarily receive more
  intensive staffing).

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Semi-independent living in England

• Perry et al. (2006) compared matched groups of
  people living semi-independently or in fully
  staffed group homes in settings with 1-3
  residents (most SI residents lived alone)
• The two groups had greatly differing levels of
  staff support
• Group home 76.8 hours per resident per week
• Semi-independent 13.3 hours

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Perry et al. (2006) found

• No difference (17 outcomes)
• Physical living environment (home-likeness)
• Physical wellbeing
• Receipt of health services
• Accidents, exploitation or abuse
• Frequency and variety of social activities
• Frequency and variety of community activities
  (ICI scale)
• Size of social network
• Inclusion of family members in social network
• Frequency of contact with family and with friends

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Perry et al. (2006) found

• No difference
• Loneliness
• Lifestyle satisfaction
• Hospital service costs
• Generic community services costs (e.g., doctor,
  dentist etc.)

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Perry et al. (2006) found

• Difference favouring semi-independent (9
  outcomes)
• Frequency of community activities without staff
  support
• Having people in ones social network other than
  family, staff, and other people with ID
• Participation in domestic activities
• Choice (on both the Choice Scale and the Choice
  Questionnaire)
• Daytime activity costs
• Total non-accommodation costs
• Accommodation costs (3.35 times higher in group
  homes)
• Total cost of all services (2.84 times higher in
  group homes)

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Perry et al. (2006) found

• Difference favouring group homes (5 outcomes)
• Problems with money management
• Have a garden (SI group much more likely to live
  in a flat)
• Eye test in the last 2 years
• Healthy lifestyle (lifestyle factors such as
  smoking, diet, alcohol exercise)
• Greater range of community activities (only on 1
  of 2 measures and only for 1 or 2 comparisons)

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Perry et al. (2006) concluded

• Poorer outcomes for semi-independent living on
  healthy lifestyle and money management, but most
  individuals still had good outcomes (money
  management difficulties were relatively minor,
  p. 27). These are issues that could be corrected
  with appropriate support.
• On balance, we conclude in favour of the cost
  effectiveness of SI living (p. 27)

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Perry et al. (2006) concluded re staff presence

• Put simply, people living with only partial
  staff support conduct their home and community
  lives more independently than people living with
  constant support. This is not due to differences
  in independent capability but due to the
  inhibiting effect of staff presence (p. 27)

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Perry et al. (2006) concluded re staff presence

• living with greater staff presence in a setting
  geared to a lower level of independence would
  constrain outcomes concerned with
  self-determination and the conduct of activities
  independently (p. 31)

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Personal Outcomes in the USA

• Gardner and Carran (2005) examined 3630
  interviews using The Councils Personal Outcomes
  Measures
• The Personal Outcomes Measures consist of 25
  items organised in 7 domains

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Personal Outcomes Measures Domains and items

• IDENTITY
• People choose where and with whom they live.
• AUTONOMY
• People use their environments.
• AFFILIATION
• People participate in the life of the community.

• ATTAINMENT
• People choose services.
• SAFEGUARDS
• People are safe.
• RIGHTS
• People are treated fairly.
• HEALTH WELLNESS
• People are free from abuse and neglect.

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Interpretation

• The different pattern of outcomes across
  residence types shows that there was an
  interaction between ability and residence type
• People with mild/moderate disability did best
  living (semi-)independently (80) whereas those
  with severe/profound disability did worst living
  (semi-) independently (52)

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• It is notable that Gardner and Carran (2005)
  found that people with mild to moderate
  disability did worst in supervised settings (such
  as group homes, hostels and institutions).
• One factor in the poorer outcome in fully staffed
  settings is likely to be the inhibiting effect of
  constant staff presence.

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Conclusion

• Regularly undertaking activities independent of
  (staff) support is associated with skill
  development and achievement of personal outcomes
  for people with lower support needs, but not for
  those with severe disability, who instead require
  active support from caregivers for successful
  participation in meaningful activities.

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Needs-based support

• Low levels of staff support in independent living
  may facilitate independence and better outcomes
  for people with milder disability
• BUT independent living provides insufficient
  support (better seen as neglect) for people with
  more severe disability to attain personal
  outcomes.

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Active Support
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Active Support

• By contrast to semi-independent living, Active
  Support seeks to improve participation among
  group home residents by training staff to
• provide more opportunities for meaningful
  participation
• spend more staff time supporting resident
  participation
• learn skills to provide more effective support
  for participation

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The Active Support Model
People participate in everyday activities with
support
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Support and Participation

• Basic issue about how support is provided. Staff
  can do things for residents or can do those same
  activities with residents and support them to
  participate.

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Active Support Research

• A fundamental reason for implementing Active
  Support is the well-documented low level of
  participation in activities by group-home
  residents, especially by people with severe
  intellectual disability.
• To date, Active Support research has taken place
  in group homes and has mostly involved people
  with more severe intellectual disability.

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Active Support Research Findings

• Active support research has shown that
  improvements in service-user participation are
  related to
• increases in the amount of time staff spend
  providing support for participation (amount of
  support)
• increases in non-verbal assistance (type of
  support)

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Active Support Research Findings

• That is, greater participation is associated with
  more staff assistance and more appropriate staff
  assistance

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Paradox?

• How do we reconcile these findings?
• Research on semi-independent living suggests that
  people do better when they have to deal with the
  day-to-day demands of independent living with
  only limited support and without the inhibiting
  effect of constant staff presence.

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Paradox?

• Yet people with more severe disability do poorly
  with little support, and experience better
  outcomes when effective support is increased.

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Needs-based support

• The issue seems to be one of matching support to
  the persons needs
• providing enough assistance in areas where it is
  needed without infringing on autonomy by
  interfering in matters with which the person
  needs no help.

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Needs-based support

• Too much and too little support can both be
  detrimental.
• Poor support makes us over reliant on our staff
  (Robert Martin, 5th September 2006)

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Are services needs based?

• There is ample evidence that many community
  living services are not needs-based, and that
  staffing and expenditure have a weak or
  non-existent relationship with residents needs
  and abilities.
• This one-size-fits-all approach risks providing
  too much and too little support to individuals
  with differing needs.

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Avoid simplistic interpretation

• This is not a case of either/or. For each
  individual there will be some activities where
  much support is needed, and other activities
  where little or no support is required.
• Our task as support workers is to give enough
  support for successful participation, but not too
  much.

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Convergence

• One area in which semi-independent living
  research and Active Support research agree is
  that opportunities for participation are vital.
  Without day-to-day participation, quality of life
  declines and skills are lost.

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SUMMARY

• PARTICIPATION
• Life be in it.
• Use it or lose it.
• Just do it.

• SUPPORT
• One size does not fit all.
• Needs-based support.
• Too much and too little support is detrimental.

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Contact Details

• Roger J. Stancliffe
• Centre for Developmental Disability Studies
• PO Box 6, Ryde NSW 1680
• Tel voicemail 02-8878 0518
• Fax [phone]
• Email rogerst_at_med.usyd.edu.au
• Web site http//www.cdds.med.usyd.edu.au/