Final Notice to readers The way in which the following report refers to Family & Community Services (FACS) – Ageing, Disability and Home Care (ADHC), was correct at the time of publication. Any reference in the document to names by which ADHC was previously known (Department of Human Services, Department of Ageing, Disability and Home Care) should now be read as FACS and ADHC. If you are having difficulty accessing any of the content within the report, please contact the Research and Evaluation Unit on 02 8270 2381. Version 1.0 Operational Performance Directorate Ageing, Disability and Home Care Department of Family and Community Services NSW May 2012
47
Embed
Notice to readers - ADHC Participation in the Individual Planning Process 1 Client participation in the Individual Planning Process Prepared for the ... but the available literature
This document is posted to help you gain knowledge. Please leave a comment to let me know what you think about it! Share it to your friends and learn new things together.
Transcript
Final
Notice to readers The way in which the following report refers to Family & Community Services (FACS) – Ageing, Disability and Home Care (ADHC), was correct at the time of publication. Any reference in the document to names by which ADHC was previously known (Department of Human Services, Department of Ageing, Disability and Home Care) should now be read as FACS and ADHC. If you are having difficulty accessing any of the content within the report, please contact the Research and Evaluation Unit on 02 8270 2381.
Version 1.0
Operational Performance Directorate Ageing, Disability and Home Care
Department of Family and Community Services NSW May 2012
Client Participation in the Individual Planning Process 1
Client participation in the
Individual Planning Process
Prepared for the NSW Department of Ageing, Disability and Home Care
by the Centre for Developmental Disability Studies
Final Report August, 2004
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 2
TABLE OF CONTENTS Executive Summary…………………………………………………………... 3
Purpose………………………………………………………………………… 4
Definitions……………………………………………………………………… 5
Findings
The Process of Individual Planning…………………………………… 7
Current Concerns About Client Participation………………………… 11
Barriers Impacting on Client Participation……………………………. 13
Interventions
Communication…………………………………………………... 16
Preference Assessment and Opportunities for Choice……… 18
Participation in Meaningful Activity…………………………….. 22
Client Participation in Context………………………………………….. 24
Staff Management, Training and Supervision………………... 25
Systemic Changes………………………………………………. 26
Recommendations…………………………………………………………….. 29
Appendix A: Framework for a Practice Guide for Staff…………………… 31
Appendix B: Effects of the Tension Between Service Values and
Service Capacity……………………………………………….. 35
References……………………………………………………………………... 36
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 3
EXECUTIVE SUMMARY
The individual planning process involves information gathering, decision-making,
implementation and review phases. Reliable and valid indicators of client participation
have not yet been developed, but the available literature indicates that clients and
their families often play a limited (or non-existent) role in the individual planning
process. There are a variety of barriers, which have led to the exclusion of clients with
severe or profound intellectual disability from the individual planning process.
Interventions focusing on communication, preference assessment, opportunities for
choice, and participation in meaningful activity in the context of staff management,
training and supervision, and systemic issues are discussed in relation to increasing
client participation.
Recommendations include:
• Improved support to clients in the areas of communication, preference
assessment and scheduling
• Improved opportunity for involvement of parents and other family members
• Staff training, management and supervision
• Systemic considerations
A framework for incorporation into a practice guide, and a sample staff-training
program, are provided.
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 4
PURPOSE
The literature review is carried out on behalf of the NSW Department of Ageing,
Disability and Home Care (DADHC), by the Centre for Developmental Disability
Studies (CDDS). It examines the literature base for effective methods of increasing
client participation in the Individual Planning Process, and recommends how such
engagement may be increased.
DADHC requested a literature review regarding ‘Appropriate and effective models of
client participation in the individual planning process with a view to increasing their
participation’. Service Policy and Standards Unit was provided with a preliminary
report stating the proposed direction in April 2004, and a draft report in June 2004.
Subsequent feedback given to CDDS indicated that DADHC required this review to
focus on specific actions direct support workers could take to engage people with
severe/complex disabilities in the person-centred planning process. Broader service
and systemic issues are mentioned briefly.
DEPARTMENT OF AGEING, DISABILITY AND HOME CARE
The NSW Department of Ageing, Disability and Home Care (DADHC) requires the
Individual Planning process to include “consultation with service users to identify and
set objectives to meet their needs and personal goals” (New South Wales Ageing and
Disability Department, 1998, p2.1.1). This follows Schedule 1(2,k) of the NSW
Disability Services Act (1993), which states that services should be designed “to
ensure that persons with disabilities participate in the decisions that affect their lives”.
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 5
DEFINITIONS
Clients The literature on which the review is based relates to people with high support needs
(people with severe or profound intellectual disability and/or complex support needs).
These people often require ongoing, extensive support and may also have additional
disabilities such as movement difficulties, sensory losses and challenging behaviour
(Downing, 1988; National Dissemination Center for Children with Disabilities 2004).
Participation
Participation means “to take part” in (Oxford Dictionary, 2003 p. 596). Granlund, Bjork-
Akesson, Almqvist, and Eriksson (2002) state that interaction and activity are two
central components of participation. Further, they note that, due to differing societal
trends and organisational principles for social services, North American literature
focuses on the individual, and European countries focus on society and/or the group,
when considering participation of people with disabilities.
Individual Planning Individual planning is a process for working out how support can be mobilised in order
to assist an individual to work out what they want, and how to get it (Department of
Health, 2001; National Electronic Library for Learning Disabilities, 2004). Individual
planning has evolved to “person-centred planning” (Mansell & Beadle-Brown 2004a;
Shaddock, 2000). Person-centred planning is a mechanism to improve quality of life
(Felce, Jones, & Lowe, 2002). Stancliffe (2001) states that all of the more recent
variants of individual planning can be referred to under the general heading of person-
centred planning, which is defined as “a process for continual listening and learning,
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 6
focusing on what is important to someone now and in the future, and acting upon this
in alliance with their family and friends” (Department of Health, 2001; Sanderson,
2000). Person-centred planning focuses on making systems more person-centred,
developing respect and understanding, giving priority to preferences and choices,
emphasising a positive view of the individual, developing creative processes for
envisioning the future, pursuing ideals, gaining access to community resources,
supporting learning and growth, and empowering individuals (Department of
Community Health, 2002; Kincaid & Fox, 2002). Underpinned by these themes, the
process of individual planning involves four phases, being information gathering,
decision-making, implementation and review.
Client participation in the Individual Planning Process The participation of people with high support needs (people with severe/profound
intellectual disability and/or complex disability) in the process of focusing on what is
important to them now and in the future, and acting upon this in alliance with their
family and friends, is examined in this review. This involves considering the ability of
service providers to continually listen to, learn about, and facilitate opportunities with,
the people they are supporting. It is important to note that client participation is
considered beyond the individual planning meeting (which may be an important part of
the decision making process). Rather, active participation throughout the entire
individual planning process is discussed.
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 7
FINDINGS The Process of Individual Planning
A host of existing systems for person-centred planning are described by Lyle O’Brien
and O’Brien (2002), including Individual Design Sessions (1980), Getting to Know You
(1982), Twenty-Four Hour Planning (1984), Personal Futures Planning (1988), Making
Action Plans (1989), Personal Histories (1990), Families First (1990), Essential
Lifestyle Planning (1992), Whole of Life Planning (1993), Planning Alternative
Tomorrows with Hope (1993), New Hats (1996), and Group Action Planning (1996). In
addition, It’s Never Too Early, It’s Never Too Late (Mount & Zwernik, 1988), Thoughts
About My Life (Manning, Reale, Smull, & Obermeyer, 2000), Listen to Me (Smull,
Sweet, Bolton, & Greene, 2000), and It’s My Choice (Allen, 2002) have been identified
as guides to increase individuals’ participation in the planning process.
According to O’Brien (2002, 402-403) and Sanderson, Jones and Brown (2002), there
are four common themes in person-centred planning systems. These are:
1. The client and his/her allies align around a common understanding of what is
important to the client now and in the future;
2. Generation of creative actions that will gradually bring about more of what is
desirable for the client;
3. Provision of support for the client and his/her allies to negotiate for
accommodation, technology aids, services, supports and funds required to bring
about more of what is desirable for the client; and
4. Continued reflection on, and response to, implementation of specific actions.
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 8
Themes one and two (above) relate very strongly to the decision-making phase of the
individual planning process – in particular, the individual planning meeting. However, it
must be stressed that the individual planning meeting is just one part of the decision
making component of the individual planning process, and that the entire process
involves information gathering, decision making, implementation and review phases. It
is cyclical in nature, as shown in Figure One. It is essential to consider how clients can
be involved in each phase of the individual planning process, from information
gathering through to review.
PHASE 1 INFORMATION GATHERING
PHASE 2 DECISION MAKING
PHASE 3 IMPLEMENTATION
PHASE 4 REVIEW
INDIVIDUAL PLANNINGPROCESS
Figure One. The Individual Planning Process
Descriptions of each element of the individual planning process will differ slightly
according to specific systems adopted. A general outline of each element is described
in Table One.
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 9
Table One. Description of Phases in the Individual Planning Process.
PHASE 1: INFORMATION GATHERING
Information about the client’s life is gathere serving, asking
the client’s family/allies, reviewing records a
The aim is to find out how life is, and om the client’s
perspective, in areas such as:
• Communication
• Preferences
• Schedule
• Medical/health
• Social relationships
• Living arrangements
• Long-term support
• Community access
PHASE 2: DECISION MAKING
Information about the client’s life, in a con
shared by and with the client and key peo
basis for developing a common understand
lifestyle. Goals are developed from this
direction to help the client move towards a
are developed and agreed upon in order to
deployed, and timeframes for implementa
these actions to occur is during and after an
Centre for DevelopmNSW Department of Ag
d, through asking the client, ob
nd professional assessments.
how life might be improved, fr
• Recreation
• Employment
• Education
• Personal management
• Family life
• Advocacy, legal
• Hopes and dreams
text of strengths, needs, hopes and dreams is
ple in his/her life. This information provides a
ing of what may constitute the client’s preferred
common understanding in order to provide a
more preferred lifestyle. Specific action plans
specify who will do what, how resources will be
tion and review. The most common forum for
individual planning meeting.
ental Disability Studies, for the eing, Disability and Home Care
Client Participation in the Individual Planning Process 10
PHASE 3: IMPLEMENTATION
Resources are organised in order to implement the actions specified during the decision
making phase. Concrete activities are scheduled in accordance with the actions generated
from the goals. The client is supported to participate in scheduled activities, and in
continued preference assessment. Records of implementation are required.
PHASE 4: REVIEW
The implementation schedule and results of the plan are regularly reviewed, along with
changes in client lifestyle and preference assessments. This informs the nature of any
changes required to support the client to experience a more preferred lifestyle.
There appears to be no evidence as to the degree to which particular systems of
planning increase engagement in the individual planning process. Reid and Green
(2002) state that there has been relative exclusion of people with severe multiple
disabilities from the person-centred movement and a lack of emphasis within the
person-centred literature on people with the most significant disabilities. As such,
there is insufficient evidence-based information about how person-centred approaches
can be adequately adapted to people with severe disabilities.
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 11
Current Concerns about Client Participation The main concerns about client participation in individual planning include:
1. The nature of client attendance at individual planning meetings;
2. Lack of client and family contribution at individual planning meetings; and
3. Current individual plans may have expired, may have no review date, or may
have been filed and not used.
There is concern that many individuals with disabilities are not engaged in their own
individual planning (Stancliffe 2001; Wehmeyer & Ward 1995). Most research has
focused on the content and technical adequacy of individual plans (such as Billingsley,
2004). Sanderson (2002) states that in order for implementation of the plan to occur,
staff need to be supported to embed the plan within the team’s culture and processes,
as well as being provided with structured opportunities for reflection. Not only do staff
need to be supported, but in order to ensure good services for people with disability,
staff also need to be valued (Shaddock, 2002). This requires a system of staff
management, which gives regular feedback to staff.
B. Systemic Changes
The service system itself provides a context for staff to provide the required support
for clients to participate in the individual planning process.
In South Carolina, resources were reorganized in order to employ independent
facilitators, creating the capacity to develop plans independent of agencies providing
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 27
direct services (Butkus, Rotholz, Kelly Lacy, Abery, & Elkin, 2002). The independent
facilitator takes the lead role in guiding the planning process, while the service
coordinator (who had traditionally developed the plan) is still involved in coordinating
and assisting with plan implementation. In England, the Department of Health (2001)
proposed that people independent of services could be funded to help people facilitate
their own plans and to broker responses to aspirations emerging from the plans.
In England, it is stated by the Department of Health (2001, p. 7) that the “development
of person-centred approach requires real changes in organisational culture and
practice”. The Robert Wood Johnson Foundation funded self-determination initiatives
in nineteen states across the USA were based on the belief that an emphasis on
preferences is not enough to change the direction of the service system – it requires
power over resources (Bradley, Agosta, Smith, Taub, Ashbaugh, Silver, & Heaviland
2001).
Rea, Martin and Wright (2002) changed the approach to providing services in a large
residential facility accommodating 198 people without staff or budget increases, using
Essential Lifestyle Planning, and stated that support from administrators and direct-
line supervisors is essential to continue the cultural shift. In a larger venture, Butkus,
et al. (2002) described the leadership, training and satisfaction issues relating to the
introduction of person-centred planning on a state-wide basis in South Carolina.
Butkus et al. state that policies, practices and expectations need to be changed to
implement effective person-centred planning. In North Carolina, it is proposed that
person-centred planning be used to drive the overall supports strategy, allocation of
resources and evaluation of quality (Dalton, 2002). The Indiana Family and Social
Services Administration (2004), and O’Brien and Towell (2003) state that we need
new relationships, new ways of thinking, new resources, new practices, and new ways
of organising. For example, specifying a portable individual budget (available to the
individual planning team in order to enable purchase of services / items that are
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 28
required to meet the goals agreed to in the decision making phase) would necessitate
a different relationship between the client, planning team and service provider.
Resources would need to be acquired or re-organised in order to set up a system of
funding portability. Individual planning teams may become more creative in thinking
about how to meet client needs (beyond the funding package). It appears there is
some agreement that, in order for sustained change around person-centred planning
to occur, systemic frameworks need to change.
However, the nature of those changes is unclear. Mansell and Beadle-Brown (2004a)
suggest that if person-centred planning is used to drive service provision, funding
constraints may limit its implementation. Further, there is a risk that service agencies
might define some activities, which they previously would have funded, as solely being
the responsibility of unpaid natural support networks. Another risk is that attention and
funds could be displaced from ensuring competent service is provided towards
individual plan production (Mansell & Beadle-Brown, 2004a; O’Brien, 2004).
Caution in making changes to the system architecture is recommended in order to
reduce the possibility that person-centred planning becomes another fad with strong
rhetoric and little meaningful action (Emerson & Stancliffe, 2004; Felce, 2004; O’Brien
& Lovett, 1992).
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 29
Recommendations:
1. Ensure that clients with severe/profound intellectual disability and high support
needs are supported to:
a. Make their communicative intent understood by staff;
b. Have their preferences identified accurately and acted upon, in daily, and
other, routines (see Appendix A).
2. Consider how to value the contribution of, and how to develop a driving vision
from, parents and/or other family members (where possible) in the individual
planning process.
3. Ensure that staff responsible for involving the client in individual planning:
a. Understand the importance of involving parents and/or other family
members (if possible) in clients’ communication assessment, preference
assessment and individual planning;
b. Demonstrate that they can understand the communicative intent of non-
symbolic communication used by the client – particularly when the client is
indicating acceptance and rejection;
c. Receive training to improve appropriate communication with clients who
have significant disability and high support needs;
d. Can systematically identify client preferences, and are aware of factors
such as satiation, deprivation and the need to regularly re-assess
preferences;
e. Receive training in individual planning
f. implement individual planning in typical environments;
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 30
g. Are made aware of the effects of, and supported to deal with, the tension
between service values and service capacities which becomes evident
through the individual planning process (see Appendix B);
h. Are adequately supervised in order to:
i. Develop, implement and revise high quality individual plans;
ii. Demonstrate when and how people with significant disability and
high support needs are involved in preference assessment and
fulfilment.
4. Ensure that the Individual Planning Process is designed to capture information
about:
a. The degree to which planned goals and activities match client preferences;
b. The degree of participation by clients and their families/advocates during
each stage of the process.
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 31
Appendix A: Framework, which may be incorporated into a Practice Guide for Staff [note: this is meant to be supplementary to DADHC’s preferred individual planning
approach, not a replacement]
Staff Issues:
⇒ Have staff been trained in Individual Planning?
⇒ How are staff managed and supported to provide effective Individual
Planning support during each phase of the process?
⇒ Have key people in the client’s support network, including staff, been
trained and assessed in communicating with the client?
⇒ Have those responsible for carrying out preference assessment been
trained in preference assessment?
Communication Preference Activity
Information Gathering
What are the results of
formal communication
assessments?
What are the results
of preference
assessments?
How does the client
currently spend his/her
time?
Decision Making
• What are the client’s goals?
• What are the parents’ and/or other family members’ goals for the
client?
• What do other key people in the clients’ support network wish for
the client?
• What is desirable for the client now?
• What is desirable for the client in the future?
• What needs to be done, and when, in order to ensure: o more of what is desirable for the client now?
o more of what is desirable for the client in the future?
o new options are presented in preference assessment?
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 32
Decision Making (cont’d)
• Resource considerations: o What resources are required, and when are they needed?
o Who will negotiate for particular resources, and what help do
they need?
o Who can we partner with to acquire resources?
o What resources do we have that could also benefit partners?
• Planning for implementation: o What support is required for continued implementation and
review of the plan?
o How will we keep track of what is being done to ensure the
client experiences more of what is desirable?
o What will be done if what is desirable now eventually becomes
undesirable?
o How will we continue to communicate with each other about
the plan?
Communication Preference Activity
Implementation
How is it ensured that
key people understand,
and respond
appropriately to, the
client’s communicative
behaviours?
How is it ensured that
regular preference
assessment is carried
out systematically,
and as part of the
regular routine?
How, and when, are the
actions agreed to during
the decision making
phase translated into
action?
Review
How is it ensured that
key people are
continuing to use the
client’s preferred
communication style?
How are the results of
preference
assessments used to
inform future action?
How and when are the
review periods for
activities determined?
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 33
Appendix B: Effects of the tension between service values and service capacity arising from the Individual Planning process (adapted from O’Brien, 2002).
A. Indicators that staff involved in individual planning are coping with the tension
between service values and service capacity: 1. Staff accept responsibility for particular contradictions as they affect the life of the
person with whom they plan;
2. Staff enlist as many people as possible, beginning with the client and those who
know and care about him/her, and support them to work together for positive
change; and
3. Staff search for (and discover) ways that the client can experience some aspects
of a desirable future outside of services.
B. Indicators that staff involved in individual planning need support dealing with the
tension between service values and service capacity: 1. Staff blame themselves for the tension (e.g., attempt a single-handed, ‘heroic’
effort to give the client whatever he/she wants);
2. Staff disregard consequences (e.g., “I have completed individual plans for all of
my clients, but have not had time to check on the outcomes”);
3. Staff make advantageous comparisons to worse practice (e.g., “not much has
really changed for clients, but the meetings we have now are much better than
the ISP meetings we used to have”);
4. Staff displace responsibility (e.g., “Management gave me a workload that makes
it impossible for me to really get to know the clients I’m supposed to make plans
for – what can you do?”);
5. Staff diffuse responsibility (e.g., “I did my part – made sure the planning meeting
was held, wrote up the plan – but implementation of the plan isn’t my job”); and
6. Staff attribute blame (e.g., “Those parents are so unrealistic and demanding – we
could never find an unpaid companion for their daughter”).
Centre for Developmental Disability Studies, for the NSW Department of Ageing, Disability and Home Care
Client Participation in the Individual Planning Process 34
References: Allen, W. T. (2002). It’s my choice. Allen, Shea & Associates, California USA.
American Speech-Language-Hearing Association (1997). Guidelines for meeting the
communication needs of persons with severe disabilities.