Participation: Lessons from the past, hope for

the futureRoger J. Stancliffe

Centre for Developmental Disability Studies, University of Sydney, and

Research and Training Center on Community Living, University of Minnesota

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.

Question

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

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?

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 don’t need to wait for assistance before participating.

Independence and participation(unpublished data from the Minnesota Longitudinal Study)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

Independence and participation(unpublished data from the Minnesota Longitudinal Study)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

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 SUPPORTSmall, local shops 31.8 16.3

Public transport 25.4 12.1

Why is participation important

John O’Brien’s 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.

A Fulfilling Life

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

Participation is also important because:

Independence and competence are supported by regular opportunities to apply one’s skills, so day-to-day participation is essential.

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.

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

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

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

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.

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”

Conclusions Lozano criticised skills-based screening as a means

of determining who should live independently, and recommended that emphasis should instead be on an individual’s 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”

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.

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.

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.

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.

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).

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

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

Perry et al. (2006) found No difference:

Loneliness Lifestyle satisfaction Hospital service costs Generic community services costs (e.g., doctor, dentist etc.)

Perry et al. (2006) found Difference favouring semi-independent (9 outcomes):

Frequency of community activities without staff support Having people in one’s 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)

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)

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)

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)

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)

Personal Outcomes in the USA

Gardner and Carran (2005) examined 3630 interviews using The Council’s Personal Outcomes Measures

The Personal Outcomes Measures consist of 25 items organised in 7 domains

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.

Outcomes by Living Arrangements (Gardner & Carran, 2005)

7380

5852

7075

62

64

71

58

30

40

50

60

70

80

90

Family Foster Supervised Supported Independent

Living Arrangement

Mea

n %

Out

com

es

Mild/Moderate

Severe/Profound

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%)

Outcomes by Living Arrangements (Gardner & Carran, 2005)

7380

5852

7075

62

64

71

58

30

40

50

60

70

80

90

Family Foster Supervised Supported Independent

Living Arrangement

Mea

n %

Out

com

es

Mild/Moderate

Severe/Profound

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.

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.

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.

Active Support

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

The Active Support Model

People participate in everyday activities with support

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.

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.

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)

Active Support Research Findings

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

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.

Paradox?

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

Needs-based support The issue seems to be one of matching

support to the person’s 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.

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)

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.

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.

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.

SUMMARYPARTICIPATION

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.

Contact DetailsRoger J. Stancliffe

Centre for Developmental Disability Studies

PO Box 6, Ryde NSW 1680

Tel & voicemail: 02-8878 0518

Fax: 02-9807 7053

Email: rogerst@med.usyd.edu.au

Web site: http://www.cdds.med.usyd.edu.au/