A case study analysis of person centred planning for
people with intellectual disability following their
transfer from institutional care
Donal Fitzsimons PhD, MBA, BA (hons) RNID
Manager of Disability Services
HSE Midland Area
23rd October 2014
Introduction
• Person centred planning (PCP) has an essential part to play in
ensuring self determination for the lives of people with
intellectual disability.
• It is typically taken as an indicator to the quality of services.
• It is regarded as especially important when considering it’s
effectiveness in impacting on the lives of people with
intellectual disability.
• Robertson’s (2005) six indices of PCP efficacy are regarded as
a standard measure.
Six indices of PCP efficacy
• Social Networks.
• Community Involvement.
• Scheduled Day Services.
• Contact with Friends.
• Contact with Family.
• Choice.
Research Aim
• This research examined the PCP process and its impact on the
reality of the life of the person with intellectual disability.
• It considered the understanding of various stakeholders in the
PCP process and investigated whether PCP brings added value
to the lives of people with intellectual disability in community
settings.
• Finally, it explored the relationship between the theory,
policy and outcomes of PCP for ongoing practice.
Research Approach
• Using a qualitative case study approach this study examined
the lives of ten (10) people who were selected from a list of
people with intellectual disability who were removed from
their families and placed in institutional settings and later
transferred to community settings.
• Semi-structured face-to-face interviews based on Robertson’s
six indices of PCP efficacy took place with three stakeholder
groups.
• The stakeholder groups included: – The person with intellectual disability.
– Their family member.
– The person’s key worker.
• A total of thirty interviews & 60 hours of audio.
• The source of the material utilised for the formation of the
case studies for each person with ID includes:
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Archival and current file study.
Study of all documentation relating to the individuals PCP.
Interdisciplinary consultations.
Interviews with directors of nursing.
Interviews with people with intellectual disability and spending time
with the person in a range of their settings including where they live,
where they spend their day and their family home of origin.
– Interviews with the family members.
– Interviews with the key workers.
– Attendance as participant observer at PCP meetings.
• One PCP meeting was attended for each individual (10 in
total).
• This informed a descriptive account of each case which was
based on the following structure:
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•
•
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Background and Content
Current Status
The PCP Process
Comment and analysis
Cross case study analysis
• Recurring themes emerged from the detailed cross
case study analysis and included:
– The legacy of institutional practices has an impact on the
PCP process.
– The structure of the PCP meeting is overformal.
– There is a limited understanding of the aims and purpose
of PCP.
– Different factors lead to resource limitations for each
stakeholder in the PCP process.
– The consequence of resource limitations are reliance on
special services.
– There is fear of additional costs and routine activities.
– Emphasis on duty of care leads to risk aversion in PCP goal
setting.
– Individual differences and local variations impact on the
efficacy of PCP.
– PCP promotes community presence but falls short of
community participation.
– Positive impacts of PCP.
Legacy Issues
Person with ID
Family Member
• Alienation from family and
community – antithesis of PCP.
• Loss of personhood & control in
their lives.
• Relinquished to patient status.
• Loss of confidence and self
esteem.
• Restricted to the menu of special
services.
• At the mercy of staff who are
paid to be with them.
• No control in their family
member being taken into care.
• Years later expected to
understand and engage in the
PCP process.
• Confusion, anxiety and fear.
• Concern that PCP will lead them
to provide direct care.
• Afraid to complain or really say
what they think.
• Deference to staff.
Legacy Issues
Key worker
• Attitude of ownership to people
in state care.
• Institutional practices persist in
community houses.
• Institutional hierarchy of
conflicting roles.
PCP meeting overformal
People with ID
Family member
• Competing with others to make
their voice heard.
• Not listened to.
• Loss of control over the PCP.
• It is not their meeting.
• Marginalised by the extent of
their disability.
• Information not accessible.
• Expected to perform.
• Emphasis on preparation.
• Confused as to their role.
• Informed of activities obscuring
the person centred aims.
• Overwhelms and knowingly
intimidates families.
• Use of staff jargon causes a
barrier to open communication.
• Unaware of the potential benefits
of PCP.
• Cautious about staffs perceptions
and judgements of them.
• Made to feel grateful for services.
PCP meeting overformal
Key worker
• Excessive control of the process.
• Performance anxiety leading to
check listing.
• Used for the purpose of self
justification or discipline.
• Over representation of staff with
eight to ten people at a PCP
meeting overpowering the
person with intellectual disability.
• Lack of active listening.
• Meetings comprised mostly of
paid staff.
Limited understanding of the aims and purposes
of PCP
Person with ID
• No training in PCP with little
input into the process.
• Erroneous assumption that
the PCP meeting is about
whether they have been
good or bad.
• A learned helplessness that
continues despite a PCP
being in place.
• Limited understanding of
SRV.
Family member
• Tend to view the meeting as
a test of their interest.
• Distorted view of their
formal status vis-a-vis the
focus person.
• As family members have
little exposure to PCP there
responses can result in
anxiety and fear.
Limited understanding of the aims and
purposes of PCP
Key worker
• Mechanical attitude to PCP.
• Focus on activities rather
than goals.
• Little creativity or initiative
in crafting goals.
Different factors lead to resource limitations for
each stakeholder in the PCP process
Person with ID
• Limited income.
• No control over income.
• Reliance on state benefits.
• Lack of security in housing.
Family member
• Multiple competing
interests.
• Families are expected to
comply with meetings
scheduled.
Different factors lead to resource limitations for
each stakeholder in the PCP process
Key worker
• Group homes with
numerous people to care
for ‘a juggling act’.
Consequence of resource limitations
Person with ID
• Relinquished to special
services.
• Lack of experience of using
mainstream services,
venues and activities due to
limited finances.
• Frequently subsidise that
staff and others incur.
Family member
• Satisfied with routine
activities within special
services.
• Due to a limited investment
in PCP training for family
members there is a lack of
belief that the person with
ID has a right to access life
in the mainstream.
Consequence of resource limitations
Key worker
• Focus on achievable
activities rather than
aspirational goals.
• Limited by what they view
management to be
compliant with.
• Reliance on the comfort
zone provided in special
settings.
Emphasis on duty of care
Person with ID
• Little or no ‘dignity of risk’.
• Emphasis on keeping the
person safe and cosseted
rather than exposing them
to new and different
opportunities.
• No opportunities to self
medicate.
• No key to their front door.
Family member
• Over reliance on
professionals who ‘know
best’.
• Families need permission
from staff to engage with
the person with intellectual
disability.
Emphasis on duty of care
Key worker
• PCP becomes confused with
the care plan.
• Struggles with competing
roles.
• Contented with
performance.
Individual differences and local variations
impact on the efficacy of PCP
Person with ID
Family member
• The higher cognitive functioning
person can make verbal
contributions and participate in
the PCP but goals are not always
realised.
• The higher functioning person
can put forward a more
mainstream personal agenda.
• Through PCP visits arranged to
siblings home but not the persons
home
• The greater the capacity and
freedom from other
commitments of the family
member the more participation
in family life is possible.
• Confusion on the status of legal
guardian.
• Confusion on the status of next of
kin.
• Seen as a patient requiring care
not as a citizen with full
participation.
Individual differences and local variations
impact on the efficacy of PCP
Key worker
• The status of the key worker
affects their power to deliver on
the specific activity goals.
• The status of the staff as key
workers varies. The power and
control lies in the hands of the
staff and they decide whether a
goal is realised or not.
• Personal characteristics influence
the PCP.
• Key workers will edit goals in line
with what they can deliver on.
• Limited use of information
technology and total
communication at PCP.
PCP promotes community presence but
falls short of community participation
Person with ID
Family member
• Activity driven with an emphasis
on increased activation.
• Special places equates to a place
apart.
• Institutional practices limit lives.
• Domestic participation increased.
• Has brought families together in
venues that are more socially
desirable.
• Happy and uncritical with current
community participation.
• Easier to be involved.
PCP promotes community presence but
falls short of community participation
Key worker
• Key workers have done a good
job in creating opportunities for
activities.
• Satisfied with token community
activities.
• Choice promotion at a micro
level.
• Community presence perceived
as the ultimate achievement.
• Institutional practices in the
community continue to limit
lives.
Positive impacts of PCP
Person with ID
Family member
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•
•
•
• PCP first point of re-engagement.
• Happy about improved
circumstances.
• On a learning curve about PCP.
• Learning about contemporary
approaches to services.
• Recovering from the legacy of
institutionalisation.
Personalised items to hand.
Improved lifestyles.
Holidays.
Person with ID attends the PCP
meeting.
• People lead busy lives and are
occupied.
• Benefits to the person in
preparing for their PCP meeting.
• Outings are life enhancing.
Positive impacts to PCP
Key worker
• They spend time considering the
person.
• Meetings act as a prompt for
staff.
• They do more in the community.
• Learning curve about PCP.
• Realise the benefits of offering
choices to the person.
• Realisation of the potential of
PCP.
• Incremental improvements in the
quality of the PCP.
Conclusion & Recommendations
Addressing the impact of the legacy issues of
institutional care and practices on the PCP process
Person with ID
• Safeguard human rights.
• Government policy to never
institutionalise people because of
their disability.
• Support the person to be part of
their family and community life.
• Support, advocacy and
counselling to build on
confidences and low self esteem.
• Recognition of full citizenship
rights.
• Give people the tools to make the
decisions and to safeguard
against acquiesance.
• Move from the use of special
services to true community
participation.
• Supported to develop natural
friendships including intimate
relationships.
Addressing the impact of the legacy issues of
institutional care and practices on the PCP process
Family member
Key worker
• A systematic approach to reengaging with families in a way
that is going to enable their
participation that alleviates
confusion, anxiety and fear.
• Provide ongoing information to
families with regard to the civil
rights and entitlements of their
family member.
• A conscious effort to establish
trust and build up confidence
with families to move from
reliance on and deference to
staff.
• Disavow the position of
ownership.
• Ongoing investment in staff
personal development with
ongoing education and training.
• Reorientation off staff who have
worked in institutional settings
regarding best practice in
community services.
• Recognition of the importance of
the role of the key worker against
the backdrop of the institutional
hierarchy.
Addressing the structure of the PCP meeting that is over formal
Person with ID
Family member
• Supported to make their voice
heard.
• Need to be relaxed and own their
meeting.
• Need to be in control of their
PCP.
• Support needs to match capacity
level.
• Information needs to be in
accessible format.
• Need to experience success and
real change.
• Need to be versed in their role in
the PCP meeting.
• Needs to be a broader
understanding of the objectives
and benefits of PCP.
• An effort to ensure that families
are important in the PCP process
and that they are supported in
their participation with the use of
everyday language and open
communication thus enhancing
relationships.
Addressing the structure of the PCP meeting that is over formal
Key worker
• Relinquish control and restore
balance ensuring the person with
intellectual disability is at the
centre.
• The PCP meeting is used to craft
person centred realistic goals
with equal representation and
the use of active listening and
open communication.
Addressing the limited understanding of PCP
Person with ID
Family member
• Ensure that the person with ID
has a proportionate input into
the PCP process.
• More work with the person
around the potential benefits of
PCP.
• Empower people to experience
success.
• Enhance citizenship roles.
• A broadening of their
understanding of the importance
of their social roles.
• Information on their formal
status vis-a-vis their family
member.
• A focused input on the
importance of goal setting at PCP
meetings.
Addressing the limited understanding of PCP
Key worker
• Education on the broader
philosophical understanding of
PCP.
Addressing the different factors that lead to resource limitations
for stakeholders in the PCP process
Person with ID
Family member
• Should be supported in renting,
buying or leasing property in their
own name in order to promote
security of residence.
• Need to be in direct receipt of
state benefit and in direct control
of their spending with support.
• Should have opportunities for
paid work with the supports
required.
• Meetings need to be scheduled
to meet family’s lifestyles.
• Empowerment of the extended
family to full participation.
Addressing the different factors that lead to resource limitations
for stakeholders in the PCP process
Key worker
• Support a more individualised
lifestyle for the person.
• Look to the natural support that
already exists in the community.
Addressing the consequence of resource limitations that are
reliance on special services, fear of additional costs and routine
activities
Person with ID
Family member
• More exposure to the use of
ordinary mainstream venues and
services.
• Avoidance of the use of
congregate settings that
segregate based on disability.
• Should not have to subsidise paid
staff to engage in their person
centred goals.
• Need to be enlightened about the
citizenship rights including the
right to access mainstream
services and activities moving on
from the segregation of special
services.
Addressing the consequence of resource limitations that are
reliance on special services, fear of additional costs and routine
activities
Key worker
• A focus on the true aspirations of
the person.
• A move from community
presence to true community
participation.
Addressing the emphasis of duty of care that leads to risk
aversion
Person with ID
Family member
• Enable people the dignity of risk
exposing them to new
opportunities with safeguards.
• Provide opportunities to take
back responsibility for healthcare.
• Promote PCP in all quality of life
domains.
• Promote self determination in a
place to live that is truly theirs.
• Risk assessment for risk taking.
• To reduce family reliance on
professionals.
• To harvest the potential of family
knowledge by empowering them
in their role to be reunited as a
family.
• A greater emphasis on
information sharing and flexible
supports to promote family
engagement.
Addressing the emphasis of duty of care that leads to risk
aversion
Key worker
• Education and training on
promoting the ideology of PCP.
• Distinction between the care plan
and PCP with prioritisation of
roles.
• Risk assessment for risk taking.
Addressing the individual differences on the efficacy of PCP
Person with ID
Family member
• Promote the individual’s self
expression through Total
Communication and skills and
activity sampling.
• Access to visiting the family home
and significant venues from their
life history.
• Information on the legal status
and citizenship rights of the next
of kin, legal guardian and the
consent status of the person with
intellectual disability needs
ongoing clarification.
Addressing the individual differences on the efficacy of PCP
Key worker
• Dismantle the many barriers that
affect the key worker’s capacity
to support the person in
achieving their personal goals.
• Education and training for the key
worker in the philosophical
underpinnings of PCP and the
mechanical aspects of conducting
a meeting and using assistive
technology and IT.
• Consider personal characteristics
to ensure a good match of person
with intellectual disability and key
worker.
Addressing the issues of PCP promoting community presence
but not community participation
Person with ID
Family member
• Move towards greater
participation.
• Move from activation in special
places to meaningful activities in
the community.
• Skills teaching to promote active
engagement.
• Use of person centred active
supports.
• Careful regard to personal items
and affects.
• Use of local amenities and
facilities for engaging the circle of
support.
• Coach families to be more explicit
in their views about person
centredness.
Addressing the issues of PCP promoting community presence
but not community participation
Key worker
• Choice has to be at a macro level
rather than a micro level.
• A shift from institutional
practices to person centred
active supports.
• Supported in a move from
community presence to full
community participation.