Notice to readers - ADHC Participation in the Individual Planning Process 1 Client participation in...

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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


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



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.



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”.



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,



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.



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.



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.



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


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.



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,

1984; Cummins, Jauernig, Baxter, & Hudson, 1994; De Kock, Saxby, Felce, Thomas,

& Jenkins, 1988; DePaepe, Riechle, Doss, Light Shriner, & Cameron, 1994; Horner,

Thompsen, & Storey, 1990; Stancliffe, Dew, Gonzalez, & Atkinson, 2001; Stancliffe,

Hayden, & Lakin, 1999; Stancliffe, Hayden, & Lakin, 2000). Reliable and valid

indicators of participation in individual planning have not been developed (Dagnan &

Sturmey, 1994; Van Reusen & Bos, 1994). There are some data available on

attendance at meetings. It seems reasonable to infer that the presence of an individual

at his/her individual planning meeting is one basic measure of participation.

In Cummins, Baxter, Hudson and Jauernig’s (1996) analysis of 163 individual plans in

Victoria, the individual was absent from 13% of meetings, and a support person

(family, friend or advocate) was present for only 55% of meetings. Shaddock and

Bramston (1991) analysed 50 individual plans in New South Wales, finding that the

individual was present at only 50% of meetings, and a support person at less than half

the meetings. Carnaby (1997) found that it was rare for individuals to attend their

planning meetings in Milan, Italy. Wehmeyer and Lawrence (1995) noted that many

individuals are left out of their planning process in the USA. At the other end of the

spectrum is the over-literal interpretation of the necessity of the individuals’ presence



at meetings. Sanderson (2001) states that stories still abound of people being locked

in the meeting room so that someone could tick a box stating that individuals attended

their own meeting.

It is not just the individual at the centre of the plan who is often excluded from the

planning process. Rodger (1995) and Stancliffe (2001) note that the role of the

individual’s family is often very limited, or non-existent, in the planning process.

Further, Rodger (1995) notes a hierarchy of influence such that, even if parents are

able to attend a planning meeting, their contribution is diminished due to a perceived

low status relative to ‘professionals’. Campbell, Strickland and La Forme (1992)

demonstrated that training given to parents significantly increased their involvement

(measured by the amount of parent language in the documented plan) in individual

planning.

Joyce and Shuttleworth (2001) stated “it is recognised that service user involvement in

[individual planning] is related to the ability of the service user to communicate

verbally”. Carnaby (1997) looked at the nature of discussions at planning meetings

(divided into those which include the individual, and those which exclude the

individual). The findings were that individuals who depend on others to speak on their

behalf are more often excluded from meetings than they are included. Ciulla Timmons

and Whitney-Thomas (1998) suggest that the meeting size, tone and conversation

flow need to match the client’s personal participation and communication style in order

for meaningful participation to occur.

Chambers (2002) developed a student participation measure for individual education

planning meetings, and found that a training program increased participation during

the planning meeting. However, this tool has only been tested with people with a mild

intellectual disability, and may not be suitable for those with a severe or profound

intellectual disability. Bremer, Kachgal and Schoeller (2003) state that it is not enough



for the client to possess requisite skills, as they can still be thwarted in their efforts to

use their skills. Further, Bremer et al. state that key people and institutions in the

client’s life should provide a conducive context for utilisation of skills, which will enable

involvement.

Cummins et al. (1996) found that 61% of individual plans in use had either expired or

had no review date, indicating that such plans were not functioning to their full

potential. Another concern is that plans are developed, then filed away until the same

time next year, with little emphasis being placed on monitoring and review of progress

towards selected goals (Sanderson, 2001), or even worse – with the same goals being

included in the plan year after year (Sigafoos, Kigner, Holt, Doss, & Mustonen, 1991).

Smull, Sanderson and Burke Harrison (1996) claim that planning without

implementation breaks an implicit promise to the participants, hurts the focus person

and damages trust, and hurts the organisation, contributing to a culture of mistrust and

disempowerment. Mansell and Beadle-Brown (2004a) suggest that lack of resources

and lack of skilled staff may prevent implementation, thereby undermining motivation

to take planning seriously.

Barriers Impacting on Client Participation Various barriers to client involvement in the individual planning process have been

proposed, as follows:

1. The perception that the presence of a severe, disabling condition in the

individual precludes meaningful participation (Wehmeyer & Ward 1995);

2. The choice making inherent in the planning process is too stressful and

complex for the individual (Carnaby 1997);

3. It may be difficult for clients to understand the verbal discussion of abstract

ideas during the planning process (Sanderson, 2001) ;



4. Many staff members may lack the skills (Reid & Green, 2002; Smull & Lakin,

2002) to know how to involve clients because of:

4.1 communication difficulties,

4.2 lack of detailed knowledge about the person’s preferences,

4.3 lack of ability to effectively facilitate meetings, and

4.4 lack of incentive;

5. Service cultures may promote dependence, limit choice making opportunities,

and stifle self-determination and involvement (Wehmeyer & Ward, 1995);

6. The planning process may serve an organisational purpose for professionals

such that individuals are not intended to be involved in any meaningful way

(Carnaby, 1997); and

7. Resource allocation and utilisation may be counterproductive in enabling

services, staff, clients and their families to effectively engage in the individual

planning process.

Each of the above barriers may impact on client participation in many phases of the

individual planning process. If staff perceive that the existence of severe or profound

intellectual disability precludes meaningful participation, there is no reason for them to

attempt to support such participation in any phase of the planning process. If the

choices demanded of the client are too stressful and complex, then the client may

make a “choice” in order to reduce the demands of the situation, rather than to

indicate a preference. Clients may lose interest, attempt to leave the situation, or use

challenging behaviour to indicate that the situation is stressful. Staff may then see

supporting choice as a negative experience and be reluctant to repeat it. Clients with

severe or profound intellectual disability may find the verbal discussion of abstract

ideas (which often occurs during an individual planning meeting) too complex, and

may attempt to indicate that they do not understand, or they may passively be present

while discussion about them occurs.



If staff do not have skills (or the motivation to use skills) in communication, preference

assessment, meeting facilitation, and phases of the individual planning process, they

are unlikely to be able to effectively support clients to participate. This is discussed in

more detail later in the report.

Systemic factors, such as resource allocation and utilisation, may be

counterproductive in enabling services, staff, clients and their families to effectively

engage in the individual planning process. A service culture promoting dependence

(and stifling self-determination) may be philosophically opposed to the reason

individual planning exists – to improve quality of life. However, this is slightly different

to the case where the planning process serves an organisational purpose for

professionals such that individuals are not intended to be involved in any meaningful

way. It may be that the aim is to improve quality of life, and that the service argues

that this can be achieved without meaningful participation.

It seems that intervention at direct support staff, management and systemic levels will

increase client participation. However, it is beyond the scope of this review to consider

in detail organisational and systemic factors, which may increase client participation in

the individual planning process.

Despite concerns of exclusion and recognition of barriers, research is scarce on how

clients can be engaged, and how staff can be supported to provide support to clients

to engage, in the planning process (Carnaby, 1997; Stancliffe, 2001). However, it

appears that certain interventions may be useful in addressing particular barriers.

These interventions include communication, preference assessment (and

opportunities for choice), and participation in meaningful activity.



Interventions 1. Communication Sanderson (2001) holds that involving people with high support needs in person

centred planning must be seen as an extension of our commitment to learning to

communicate effectively with people and responding to their communication.

Individual planning is a mechanism to obtain a higher quality of life, and it seems

possible for an individual, no matter how significant the support need, to have some

involvement in determining what is and is not acceptable in life (Wehmeyer, 2002).

How clients communicate what is, and is not, acceptable, varies (American Speech-

Language-Hearing Association, 1997; Community Care Needs Assessment Project,

2001; Jones, 2001; Making Decisions Alliance, 2004). If one has a significant,

complex disability and high support needs, then it may be that non-symbolic modes of

communication, such as gestures, eye gaze and body language are relied on to

communicate (Beukelman & Mirenda 1998; Kerr, Evans, Nolan, & Fraser, 1995; Nind

& Hewett, 2002).

If those responsible for involving the client in the individual planning process cannot

ascertain the communicative intent of non-symbolic communication, then they may

believe that the presence of a severe, disabling condition in the client precludes

meaningful participation. However, if those responsible for involving the client in the

individual planning process can ascertain the meaning behind (the communicative

intent) of non-symbolic communication, then the presence of a severe, disabling

condition in the client will not be considered to preclude meaningful participation in the

individual planning process.



On this basis, it seems reasonable to propose that training staff to identify the

communicative intent of non-symbolic modes of communication (such as gestures,

eye gaze and body language) of clients with a significant, complex disability may be

beneficial in involving such clients in the individual planning process. Being able to

make communicative intent understood by staff may enable clients to be involved in

the individual planning process. This notion is supported by the Foundation for People

with Learning Disabilities (2000), Nind and Hewett (2002), O’Brien and Lyle O’Brien

(1996), and Smull (1996), who call for staff to deepen their relationships by listening

to, and learning from, the people they support. Techniques such as direct observation

and feedback, or enabling staff to view video tapes of their interaction with clients,

may be helpful in identifying communicative behaviours and appropriate responses.

Additionally, benefiting from the knowledge of others (family, previous staff) by

recording and organising this information into an individual communication dictionary

may be of considerable assistance.

Some clients with complex disabilities may demonstrate challenging behaviours as a

result of their difficulty in communicating with people.

Some clients with complex disabilities may use aggressive or self-injurious behaviour

in order to communicate, which may result in negative emotional consequences for

staff. This, in turn, may make it more difficult for staff to empathise with the client

and/or to identify realistic ways to achieve their goals (Mansell & Beadle-Brown,

2004a). Educating staff to understand and to intervene positively in regard to the

communicative intent of challenging behaviour may increase client participation in the

individual planning process.

Unfortunately, staff responsiveness to communicative attempts of clients with high

support needs has not been found to be high. Houghton, Bronicki and Guess (1987)

found that staff rarely responded to communicative behaviours of people with severe,

multiple disabilities. It was claimed by Beukelman and Mirenda (1998) that staff may



be largely unaware of, or insensitive to, the communicative attempts of people with

significant disabilities.

It appears that staff often rely too heavily on verbal communication, overestimating the

receptive language ability of clients with severe intellectual disability (Mansell &

Beadle-Brown, 2004a). Bradshaw (2001) found that 45% of communicative acts of

staff were too complex for clients to understand, indicating that staff tend to

underestimate their own use of verbal communication, and overestimate their use of

non-verbal communication. Van Vonderen (2004) found that training for staff using

sequence interruption and immediate feedback improves appropriate communication

with clients who have significant disability and high support needs.

In order for the communicative intent of non-symbolic modes of communication to be

understood by a range of people, Augmentative and Alternative Communication

systems are essential. As noted, a gesture dictionary, which contains a description of

the client’s idiosyncratic gestures, their meanings and suggestions for appropriate

responses can be used to inform a variety of people about how the client

communicates and what appropriate responses are (Department of Speech-Language

Pathology, 2003).

For clients who are able to use a picture as a referent in a variety of contexts, the use

of photographs, line drawings or other symbols may be the appropriate mode of

communication (Williams, 2001). Augmentative and Alternative Communication

techniques may be developed around the client’s ability, and could include sign

language, eye pointing, or the use of devices such as mouth sticks, communication

boards, headsticks, switches and computers.

2. Preference Assessment and Opportunities for Choice Newton, Horner and Lund (1991) and O’Brien and Towell (2003) state that an

individual’s preferences should be determined as part of the development of their



individual plans. Reid and Green (2002, 185) recommend that, in regard to specific

issues to be addressed in person-centred planning for people with severe disabilities,

it is desirable to ensure accurate identification of preferences, implement person-

centred planning in typical environments where clients spend their time, and ensure

adequate staff performance during the implementation of person-centred plans to

effectively support clients to attain their desired outcomes.

In order to ascertain preferences, it is essential that staff have the ability to identify

when the client is communicating acceptance and rejection (Barber, 1994; Coupe

O’Kane & Golbart, 1998). The ability to signal acceptance and rejection may involve

more than a simple “yes” or “no” when one has profound intellectual disability and high

support needs (Beukelman & Mirenda, 1998), and may involve overt/obvious

behaviours (such as smiling, laughing, frowning or crying), more subtle behaviours

(such as averted eye gaze, an increase in body tension, increase in respiration, or

sudden passivity), and may be idiosyncratic. Beukelman and Mirenda (1998) state that

parents have a unique competence in knowing their children and in understanding

their children’s communication. As such, it seems beneficial to involve parents in

communication assessment and response when possible and appropriate

(Wehmeyer, 2002).

Newton et al. (1991) concluded that staff, families and individuals with a disability were

able to identify preferred activities. This was done by parents/guardians/advocates

identifying what they thought the individual preferred, staff reading the names of

activities aloud and helping an individual to communicate preferences, or by helping

the individual to engage in activities and then making judgments about the individual’s

preference, based on facial expressions, degree of active participation, and

persistence in performing the activity.



However, Joyce and Shuttleworth (2001) found that staff judgments varied in regard to

how much particular individuals preferred activities, which indicates that relying on

staff judgments alone for preference identification is likely to be unreliable. This is

supported by Reid and Green (2002, 186) who state that “investigations have

repeatedly shown that caregivers of people with highly significant disabilities typically

have opinions that are not accurate representations of the true preferences of these

individuals”. If those conducting preference assessments are not aware of the

influence of factors such the natural context, deprivation and satiation, the results of

such assessments could be inaccurate (Gottschalk, Libby, & Graff, 2000). Carr,

Nicolson and Higbee (2000) suggest that it is beneficial to carry out preference

assessments in a natural context.

Given Reid and Green’s (2002) statement that empirical research has repeatedly

shown that caregivers of people with highly significant disabilities typically have

opinions that are not accurate representations of the true preferences of these

individuals, it seems reasonable to propose that the validity of preferences identified

through person-centred planning be supplemented with systematic preference

assessments. Systematic preference assessment may involve the presentation of a

one or more items, and subsequent observation of the client’s behaviour. The

observer records whether the client accepts (approaches), rejects (avoids) or selects

(from multiple options) the item (Foxx, Faw, Taylor, Davis, & Fulia, 1993; Reid,

Everson, & Green, 1999).

For clients who have the ability to choose from a range of items, it may be appropriate

to extend preference opportunities beyond selecting from among real objects, and use

pictographic representations, or spoken words. For clients who can conceptualise time

beyond the here and now, it may empowering to offer selection of activities in the

context of a daily or weekly schedule, and to assist the client to place a symbolic



representation (e.g., a photograph) of the chosen activity on the client’s schedule

board or calendar (Anderson, Sherman, Sheldon, & McAdam, 1997).

Newton, Horner and Lund (1991) note that expressing preferences and making

choices may be at risk for clients with severe developmental disabilities, as it is more

likely that they may have few communication skills, limited sampling experience,

minimal funds, inadequate social support, and little control over daily schedules.

Wehmeyer and Garner (2003) found that opportunities to make choices contributed

significantly and positively to greater self-determination and autonomy, regardless of

intellectual ability.

There are a range of choices in the planning process, and ensuring that staff are able

to ascertain the type of choice relevant to the client’s ability may be helpful in

increasing a preferred lifestyle. Etmanski (2000) states that decision-making

assistance should be based on the individual’s values, beliefs, experiences, and

preferences. For clients with a significant disability and high support needs, it seems

reasonable to propose that the individual’s preferences around lifestyle need to be

considered (Towell & Sanderson, 2004).

In Oregon, USA, information about activity preferences is collected as a matter of

course as part of the individual planning process (Newton et al., 1991). This includes

recording the outcome of preference assessment, the approximate frequency of client

engagement in preferred activities, and the client’s level of independence in

performing preferred activities. This planning and data collection system places formal

emphasis on preferred activities. In this context, Newton et al. (1991) researched the

degree to which activity preferences of 15 adults with intellectual disability were

subsequently included in their individual plans, finding that 78% of the individual plan

objectives were preferred activities.



There are no available comparative data from individual plans developed using other

systems that do not routinely assess participation in preferred activities, so databased

comparisons are not possible. Even so, 78% appears to be a rather high percentage

of preferred activities, suggesting that the formal emphasis on preferences as part of

Oregon’s individual planning system yielded higher levels of preferred activity than

might otherwise have been the case. If preferences are considered to be important, a

system such as that used in Oregon would provide a vehicle for the collection of

information about the nature, frequency and level of independence of clients engaging

in preferred activities. There may be times when the client needs to engage in non-

preferred activities (e.g., medical procedures). A structured system focusing on

preferences, and requiring data collection may set up a change in the way services

are delivered. It could lead to an expectation that, unless there is a good reason for

the client not to engage in preferred activities, then staff are directed to provide clients

with access to preferred activities.

3. Participation in Meaningful Activity Hatton (2001) states that people with severe intellectual disability are significantly

disadvantaged in terms of leading typical and fulfilling lifestyles, and Felce, Jones and

Lowe (2002) suggest that individuals’ activity preferences need to be considered as

part of an approach to remedy the situation. During the implementation phase,

scheduling of preference assessment, and scheduling of activities (including identified

preferred activities), are undertaken.

Anderson et al. (1997) state that the degree of client participation in typical daily

activities reflects quality of life and quality of services, but the reality is that people with

a severe or profound intellectual disability do not spend a large part of their day

participating in typical daily activities.



Participation in meaningful activity is an essential part of the implementation phase of

the individual planning process. Through such participation, clients can be supported

to actively pursue the goals agreed during the decision making phase of the individual

planning process – goals which are designed to bring about a more fulfilling life.

Anderson et al. (1997) compared participation rates for clients with and without picture

schedules, and found that engagement in typical daily activities was greater when

picture schedules were provided. Clients were involved in choosing activities on the

schedules, less preferred activities were followed by more preferred activities, and

regular staff required little training in order to facilitate schedule implementation. This

type of support may enable clients to move towards a more preferred lifestyle.

The Active Support approach proposed by Felce, Jones and Lowe (2002), may also

provide an effective means of translating goals identified during the decision making

phase of the individual planning process into everyday activity. Active Support is a

system for planning clients’ activities and specific staff support on a daily basis. It

trains staff in small community residences to plan and monitor activities in consultation

with, or on behalf of, clients with severe intellectual disability, as well as to interact with

them in a way that supports and encourages their participation in the activity

(Sanderson, Jones, & Brown, 2002). Further, Mansell and Beadle-Brown (2004b)

explain that Active Support involves a systematic pursuit of immediate opportunities

for clients to engage in meaningful activities and relationships.

Communication, preference assessment and participation in meaningful activity may

be used to support client participation in each phase of the individual planning

process. During the implementation phase, participation in meaningful activity is likely

to have a greater emphasis as clients are supported to actively move towards the

realisation of goals agreed upon during the decision making phase of the process.



Client Participation in Context Directly supporting the client to participate in the individual planning process through

communication, preference assessment and participation in meaningful activity are

likely to lead to a more preferred lifestyle. The nature of such support needs to be

considered in the context of systemic factors and staff management, training and

supervision. Figure Two illustrates how individual planning is embedded in staff and

systemic factors.

PHASE 1INFORMATIONGATHERING

PHASE 2DECISIONMAKING

PHASE 3

IMPLEMENTATI NO

PHASE 4 REVIEW

CLIENT & FAMILY PARTICIPATION

Figure Two. Systemic and Staff Issues Providing a Context for Participation A. Staff Management, Training and Supervision



The ability of staff to support clients to participate in the individual planning process is

a key factor in whether or not meaningful participation will occur. In particular, staff

require an understanding of what they need to do in regard to client participation in

individual planning (e.g., Appendix A). Staff need to be trained, organised, supervised,

and well managed. Training in person-centred planning should be more than a one-off

classroom style session. Rather, practical tasks, ongoing training sessions, access to

support, and peer feedback sessions are likely to bring about lasting changes in staff

performance (see Appendix B). Staff require feedback about their performance to

ascertain whether they are adequately supporting clients to participate in the individual

planning process.

The standard of staff training in the disability sector appears to be variable. For

example, even if facilitating meetings is on the curriculum for disability support staff,

training is often ineffective for applying knowledge on a routine basis, because it lacks

a performance-basis (Reid & Green, 2002). This is particularly the case for facilitating

person-centred planning meetings. In order to ensure that staff can effectively facilitate

a meeting, training programs must require staff to practise their newly acquired

facilitation skills and receive feedback on their skill application. This practice-feedback

opportunity must continue until staff demonstrate that they can effectively use

facilitation skills during planning meetings (Reid & Green, 2002).

The lack of involvement of people with severe or profound intellectual disability in

individual planning is not a problem unique to NSW. Key workers are generally directly

responsible for ensuring that such individuals are involved in their individual plans.

Carnaby (1997) found that 47% of keyworkers supporting people with complex needs

in the individual planning process felt unsupported, and that they had concerns about

the meaningfulness the process has in its current form for this group of people.

O’Brien (2002) states that such concerns could shift to “ethical disengagement”,



brought about by staff being unable to live with the tension that comes with the

contradiction between service values and service capacities. When staff begin seeing

life and its possibilities from the perspective of the client, they may encounter

contradictions between how life is for the client now (service capacities), and how life

could be improved for the client (service values). It appears that those supervising

staff should be aware of the effects such a tension can bring (see Appendix C), and

that staff are supported accordingly.

It seems reasonable to propose that the provision of training and incentives for staff in

identifying communicative behaviours and preferences of clients, and in monitoring

their own engagement in the planning process, will be helpful in increasing

participation of clients with high support needs in individual planning. Further, frontline

supervisors of these direct support staff should ensure that the skills acquired during

training are able to be incorporated into an effective and motivating work environment

(Hewitt, Larson, Lakin, Sauer, O’Nell, & Sedlezky, 2004; Parsons, Reid, & Crow

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



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



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).



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;



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.



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?



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?


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


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?



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”).



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