Individual Support Plans: enhancing personal outcomes

Jos H.M. van Loon, PhD.

Arduin Foundation and Department of Special Education of the Ghent University

1. Introduction

For organizations providing supports to persons with intellectual disability, it is their main task
to enhance the quality of life of their clients. Furthermore, one of the current challenges for these
organizations, which is more and more emphasized, is the need to use evidence-based practices.
Evidence-based practices (EBPs) are defined as practices that are based on current best evidence
that is obtained from credible sources that used reliable and valid methods and a clearly articulated
and empirically supported theory or rationale (Schalock, Verdugo & Gomez, 2011). Evidence-based
outcomes (EBOs) now are a critical component of evidence-based practices (Van Loon et al.,
2012). Evidence-based outcomes are defined as measures obtained from the assessment of quality
of life domain-referenced indicators that: (a) are based on a cross-culturally validated QOL
conceptual and measurement model (Schalock, Verdugo, Jenaro, Wang, Wehmeyer, Xu et al.,
2005; Wang, Schalock, Verdugo & Jenaro, 2010); (b) have utility in that they can be used for
multiple purposes (Schalock, Verdugo, Bonham, Fantova & van Loon, 2008; van Loon, Claes, Van
Hove, & Schalock, 2010); and (c) have robustness in reference to the reliability and validity of the
assessment strategy employed (Claes, Van Hove, van Loon, Vandevelde, & Schalock, 2009).
Evidence-based practices and evidence-based outcomes relate respectively to the throughput and
output/outcome components of a program logic model.
This means that the supports given by an service provider should be evidence based-based and lead
to good evidence-based outcomes: good quality of life related personal outcomes.
The present contribution focuses on the application of evidence-based outcomes to the assessment
and use of quality of life-related personal outcomes and its use in Individual Supports Planning. In
the Round Table the resulting Person centred Support System will be demonstrated.

2. Context

Arduin is a Dutch organization that provides support services in living, daily activities, and
work for 740 people with intellectual disability, 535 of whom receive 24 hour a day
services/supports. Some 15 years ago a shift took place in Arduin from facility-centered services to
an individualized community-based supports approach within the quality of life framework (Van
Loon & Van Hove, 2001). Arduin has developed an organization framework that focuses on
improving evidence-based outcomes at the individual level.
Fundamental beliefs are basic to an organizations commitment to a quality of life and the delivery
of individualized supports. These beliefs are that: (a) the quality of life of people with disabilities is
composed of those same factors (that is, core domains) and relationships that are important to all
persons; (b) quality of life is enhanced by empowering persons to participate in decisions that affect
their lives; (c) quality of life is enhanced by the acceptance and full integration of persons into their
local communities; and (d) quality of life is enhanced through the provision of individualized
supports (Brown & Brown, 2003; OBrien & OBrien, 1989; Schalock, Brown, Cummins,
Mattikka, Felce, & Brown, 2000; Schalock & Verdugo, 2012 ; Vreeke, Janssen, Resnick, & Stolk,
1998).
Arduin has embedded the improvement of ones quality of life in its organization policies and
practices, and the involvement of consumers in meaningful roles has become an essential
organizational strategy. The key question is the degree to which consumers are involved in the
development and implementation of their individual supports plans (ISP). Arduin developed an
Individualized Supports System that is: person-centred (i.e., based on the persons interests,
preferences, needs, and natural support network); responsive (i.e., based on a dialogue between the
person and those involved in the supports plan); flexible across the life span; proactive (i.e.,
equalizing opportunities with fellow citizens, empowering the person, generating effective social
inclusion, and increasing social/community participation); and data based (i.e., based on the
assessed pattern and intensity of support needs and evaluated in terms of assessed personal, quality
of life-related outcomes).
The outcomes of an individual supports plan for a person should be an enhanced quality of life.
Determining whether this outcome occurs, requires the reliable and valid assessment of quality of
life-related domains. The Personal Outcomes Scale (POS; van Loon, Van Hove, Schalock, & Claes,
2008), which is also based on the QOL conceptual model and measurement framework by Schalock
and Verdugo (2002), was developed for that purpose.
In the person-centred support system there is an alignment between the wishes and goals of a
person, his or her support needs as measured by the Supports Intensity Scale (Thompson, Bryant,
Campbell, Craig, Hughes, Rotholz et al., 2004), the Individual Supports Plan (ISP), and his or her
quality of life as measured with the POS.
This alignment among wishes and goals, assessed support needs, Individual Supports Plan
components, and quality of life outcomes, creates an excellent opportunity to enhance clinical
decisions regarding how to support people methodically in improving their quality of life. In Arduin
this support system is communicated electronically in web-based applications (van Loon, Van
Hove, & Schalock, 2009).

3. A web-based approach to individual support plans based on the standardized
assessment of support needs, personal goals, and individualized supports, and the
measurement of quality of life outcomes

In developing Individual Support Plans (ISP) the two most important, and at the same time quite
simple, questions are:
1) What does the person want?, and 2) Which support does the person need?
The third question then is: 3) What is the purpose of support? What should be the outcome of the
supports given to the person? And also here the answer is simple: the outcome should obviously be
a good quality of life.

If these are the starting points one can propose the following guidelines for an ISP.
An ISP should:
Explore goals and personal perspectives: what does a person want in his life
Explore what support a person needs and wants: which supports are important for and which
are important to the person
Formulate support strategies in answer to the personal goals, wants and needs
Monitor in dialogue with the person the process of support
Measure personal outcomes
Comprise an ongoing system of fine-tuning and adjusting
Use evidence based practices in doing so
Be transparent and comprehensible for the person

Following these guidelines we developed an internet based application for an ISP in which the eight
QOL dimensions provide the framework for developing support strategies, the dialogue with the
client is built into the system of supports, and evidence based instruments are used to measure
support needs and personal outcomes.
In Figure 1 the scheme for this ISP is depicted.

Figure 1 The scheme for an ISP



























The dialogue as central process

As mentioned before the key question is the degree to which consumers are involved in the
development and implementation of their individual supports plans (ISP). Central element in a
support methodology therefore is the dialogue with the person. This dialogue is ongoing during the
process of developing the ISP nd during the supports as such. In fact, as the supports can be
adjusted anytime, as a consequence of this dialogue, the process of developing an ISP is an ongoing
process. The personal assistant is the professional who is responsible for dialogue with the person
on the ISP. Each client has a personal assistant that he/she can call upon for support in the dialogue
with the organization, in formulating wishes and support requests directed at the organization. The
personal assistant has a regular contact with the client to speak about his wishes (concerning living,
working and leisure), and the ways to give this content and shape. The results of this dialogue can
be written down in the Personal Plan of the client. He or she maintains the communication between
the various staff members of the organization, the client, his family and/or legal representative of
the client. He/she sees to it that the agreed service and care is carried out in conformity with the
wishes of the individual client. Therefore, it is fundamental that a personal assistant is not a direct
caregiver towards his/her client, but in most cases a supportworker of the organization working in
direct care with other clients. The personal assistant is, when required, the interpreter/translator of
the wishes of the client, but always explicitly from the role of assistant. The intensity and frequency
of this support is totally dependent on the request of the client (of course within the financial
margins of the organization)!
Component 1
Wishes, personal aspirations and goals:
structured interview with the client
Component 2
2.a. Determining Support Needs: to nd for the person
e.g. Interview with Supports Intensity Scale
2.b. If needed: additional diagnostics / assessment
Component 3: Developing an Individual Supports plan
a. The client (with his personal assistant) synthesize the wishes and goals with the support needs
and come to an idea for an individual support plan: how do I want to be supported?
b. This idea is discussed with the supportworkers /proffessionals (and the psychologist).
c. Together they decide on a ISP on which support the
person wants so he can fully participate in the community.
Component 5: Monitoring
Dialogue with the clint
To what extent are goals
and wishes realised?
Does the person get the support
he / she needs?
Component 6 : Evaluation of the Individual Support Plan
Measuring QOL by measuring Personal Outcomes with the POS
Component 4
Implementation
Those involved in the support of the person: the
natural network and the professional supportworkers
In the scheme of the ISP the ongoing dialogue between the person and his / her personal
assistant has an explicit place in Component 1,where the focus is on the goals of the person as a
starting point for an ISP, in Component 3, where the focus is on how the person wants to be
supported, and in Component 5, where the focus is on whether the person gets the support he/ she
needs and which brings him / her closer to his goals in life.
In Component 2, where the focus is on which support the person needs and in Component 6
where the focus is on the personal outcomes, the Supports Intensity Scale and the Personal
Outcomes Scale are administered, equally in a conversation with the person, by independent and
trained interviewers. These interviews however are held once in a three year (SIS) or one-and-a-half
year (POS) cycle.

Component 1: the goals of the person
The starting point for an ISP is the dialogue with the person on his wishes, goals, dreams
and personal aspirations in life. Important is that we get a picture of what the person wants in his
life: how he sees and dreams of his future. This is not a single conversation, but one of the central
themes for an ongoing dialogue. In the application of the ISP there is a sub-application in which the
personal assistant writes down what are the wishes, goals, dreams the person mentions in their
meetings. This sub-application uses the format of the eight QOL-domains. To support the personal
assistant in deciding where to write what wishes and goals, there is per domain an listing of SIS
items corresponding with this QOL domain. This listing is based on the overview in Table 1.

Table 1 QOL domains and corresponding SIS-items
QOL Domain SIS item
Personal Development A1 - A8 (Home Living)
C1 - C6 (Lifelong Learning)
Protection &Advocacy 2
Self-Determination C 8 (Lifelong Learning)
Protection &Advocacy 1, 5 & 7
Interpersonal Relations B4, B7 (Community Living)
D3, D4 (Employment)
F1 - F7 (Social Activities)
Social Inclusion B1, 2, 3, 5, 6, 8 (Community Living)
F8 (Social Activities)
Rights Protection &Advocacy 3, 4, 6, 8
Emotional Well-being C9 (Lifelong Learning)
E8
Exceptionals Behavioral support needs
Physical Well-being C7
E1 - E7 (Health and Safety)
Exceptional Medical Support Needs
Material Well-being D1, 2, 5, 6, 7, 8 (Employment)

The person is also asked to think about the importance of each goal to get his /her prioritization.
The personal assistant formulates the goal / wish within a limited number of words, and can add a
clarification if necessary, as illustrated below:





Component 2: the support needs of the person
The support needs of the person are measured by the Supports Intensity Scale (SIS;
Thompson et al., 2004). The SIS measures the type, frequency and intensity of the supports that are
needed by the person. The SIS is composed of three sections:
Section 1, the Support Needs Scale, consists of 49 life activities that are grouped into six
subscales:1) Home living 2) Community living 3)Lifelong learning 4) Employment 5) Health and
safety and 6) Social activities
Section 2, consists of 8 items related to Protection and Advocacy Activities
Section 3, Exceptional Medical and Behavioral Support Needs, includes 15 medical
conditions and 13 problem behaviours that require increased levels of support.
For every item in Section 1 and 2 the type of supports, frequency and daily support time are
measured. For the items in Section 3 the intensity of support is measured.
The SIS interview is explicitly done with the person him/herself and his/her social network, mostly
parents or other family members.
A SIS interview is done with every new client by MEE, an independent Dutch organisation for
social support to people with disabilities. Subsequently a SIS interview is done every three year.
Arduin has, licensed by the AAIDD, developed an electronic version for the Dutch translation of
the SIS.
When there is a SIS-based overview of support needs, the personal assistant sits together 1) with the
person to discuss what are in his / her view the most important support needs (important to the
person), and 2) with the support workers to discuss what are the most important support needs in
their opinion (important for the person). This prioritizing is done in the application for the ISP.


Component 3: Developing an Individual Supports Plan
The ISP is written by the Personal assistant within a format of the eight domains of QOL.
Together with the client they synthesize the wishes and goals with the support needs and come, as
an answer to these, to an idea for an individual support plan: how do I as a person want to be
supported? This idea is discussed with the supportworkers /professionals and the psychologist, and
as the support team they decide together on a ISP on which supports to give to the person so he can
fully participate in the community.
Most essential in developing these support-instructions is the ability of the support team of problem
solving, or should we say the ability and creativity of finding solutions. To help the personal
assistant in writing these instructions there is an overview of exemplary support strategies per QOL
domain by Schalock (2014) in the application. This overview is in Table 2.


Table 2 Aligning Quality of Life Domains to Potential Support Strategies and Anticipated
Effects

Quality of Life Domain Exemplary Support
Strategies
Anticipated Effects
Personal Development Facilitate personal goal
setting
Implement self-
management, self-
evaluation, self-instruction
programs
Build on personal strengths
(e.g. practical skills, social
skills, successful
experiences, knowledge
sharing)
Maximize incentives (e.g.
rewards, opportunities to be
successful)
Implement skill
development programs
Provide assistive
technology (e.g.
communication devices,
computers, memory aides,
medication dispensers, med
alert monitors)
Modify or accommodate
environments (living, work,
recreation)
-Facilitates motivation and
internal locus of control




-Enhances successful
performance and increases
sense of self efficacy (belief
one can do it themselves)

-Increases personal
motivation and goal setting

-Facilitates learning,
independence, interactions,
and communication





-Increase access and use
and independence
Self-Determination Allow/facilitate choice and
decision making
Teach self-regulation
Use smart technology
-Facilitates internal local of
control, self-esteem, and
sense of empowerment
-Enhances personal control
Interpersonal Relations Use communication/social
media devices
Involve in social skills
-Increases social
engagement

training program
Involve in peer-group (e.g.
PALS, Best Buddies)
Maximize family
involvement
Emphasize personal
strengths (e.g. attitudes,
skills, knowledge sharing)

-Increase social networks



-Increases perceived
societal contribution
Social Inclusion Access/interface with
natural supports
Use social media
Facilitate transportation
Use prosthetics (sensory or
motor devices)
-Increased community
access, participation, and
involvement
Rights Advocate for full
citizenship, access, due
process
Involve in self-advocacy
Treat with respect (e.g.
privacy, recognition,
dignity)
-Ensures equity, inclusion,
and legal rights

-Maximize empowerment
and inclusion
-Respect human rights
Emotional Well-Being Provide safe and predictable
environments
Maximize incentives (e.g.
rewards, recognition,
opportunities to succeed,
acknowledgements)
Use positive behavioral
supports

Access professional
services
-Reduce fear and anxiety

-Increase motivation and
satisfaction


-Reduce challenging
behaviors and increase
positive interactions
-Maximize mental/
behavioral health
Physical Well-Being Provide prosthetics (i.e.
sensory or motor
enhancement devices)
Implement nutritional
programs

Implement or increase
involvement in exercise
programs

Access professional
services
-Increase sensory
processing and physical
mobility
-Maintain weight control
and encourage proper and
balanced nutrition
-Enhance human
functioning and reduce
negative effects of obesity
and/or inactivity
Maintain or improve
medical/physical condition
Material Well-Being Involve in supported
employment program
Provide paid sheltered
workshop employment
Network with generic
employers
-Increase economic self-
sufficiency and sense of
accomplishment



Enroll in vocational training
program
Participate as a volunteer
-Increase job-related skills
and behaviors
-Increase sense of
contribution and purpose

Concrete the personal assistant chooses in the application a QOL domain and he sees on his screen
the wishes and goals of the person regarding this domain, nd the corresponding support needs as
expressed in SIS items, based on the format in Table 1. He then can write an instruction on how to
support the person per SIS item / support need. In writing instructions in the ISP one can make the
distinction between the supports for the person with regard to his ongoing support needs, and
supports that have a clear objective of improving of learning. In the application one can choose for
either of these. In the latter case there is a format to describe the instruction: one is asked in the
application to describe the objective, the what, how, when, and who.

Component 4: Implementation
In this phase the ISP is implemented by those people who are involved in the supports of the
person. The ISP as written by the personal assistant is a quite complete overview of the support
needs of the person and which support to give per item of support need.
However, based on the prioritizing by the person of his / her wishes, he himself and his legal
representatives see on their screen (after login) a very compact display of the ISP.
Based on the prioritizing by the person of his / her wishes nd the prioritizing by the person and the
supportworkers of the support needs, the support workers see (after login) on their screen a
somewhat more elaborate, but still compact display of the ISP. This should be the information that
is needed to support the person day by day.
Both the person and the supportworkers can also click on the complete version of the ISP, which
can be necessary in situations that one doesnt encounter every day.

In giving the support to the person it can be experienced that the instructions in the ISP are not
correct or need to be adjusted. In that case it is possible to communicate this to the personal
assistant so he can make the necessary adjustments.


Component 5: Monitoring
It is essential that an individual supports plan is monitored continuously. The question is
whether the supports the person gets are appropriate: 1) does the way the person is supported help
realizing his wishes, goals and personal aspirations?, and 2) are the supports the person gets an
appropriate answer to his support needs? The fact that wishes are formulated in a compact way is
meant to be helpful for this purpose. And in case there is are supports that have a clear objective of
improving of learning, the objective, the what, how, when, and who are formulated so one can
evaluate based on this. In case of the supports for the person with regard to his ongoing support
needs the question is simply are they, yes or no, an appropriate answer to the support needs.

Component 6: Evaluation of the Individual Supports Plan
Every 1,5 years the outcomes of the supports are measured with the Personal Outcomes
Scale to get an idea of changes in the quality of life-related personal outcomes. These results then
are shared with the client and his / her personal assistant. They can speak on these in their ongoing
dialogue and thus these results can be used to adjust and thus improve the quality of the ISP.
The Personal Outcomes Scale (van Loon et al., 2008) is based on the QOL conceptual
framework by Schalock and Verdugo (2002). The proper administration and use of the
Personal Outcomes Scale (POS) results in the assessment of QOL indicators related to the
eight core (and universal) QOL domains (Independence: Personal Development, Self-
Determination, Social Participation: Interpersonal Relations, Social Inclusion, Rights, and
Well-being: Emotional Well-Being, Physical Well-Being, Material Well-Being). This
assessment is preferably a interview with the person (self-report) but if the person cannot
speak for himself the interview is with a professional or a parent ( report by others). The POS
has 6 items for each QOL domain. For comparability purposes, the content of each item is the
same for the Self Report and Report by Others versions. In version 2.0 of the POS-A we
added a section entitled Qualitative Comments. The interviewer uses this section to record
statements from the individual as to what is important for his or her life, what personal goals
does the person has for his of her life, what is needed to improve his / her quality of life, and
what is needed to improve the supports the person receives. The Scale thus results in scores
over the three factors and eight domains on Quality of Life, nd in an overview of qualitative
comments per QOL domain. In Figure 2 an example of a part of POS results for an individual.

Figure 2. Example of part of the POS results.






4. Conclusion
The use of these evidence-based outcomes includes multiple purposes in the Arduin
program, with as most important purpose evaluating the outcomes of person-centred planning via an
Individual Supports Plan. As the scores of the individual clients on the POS are written down in a
web-application they can be depicted in several ways. The data are aggregated to give EBO
information regarding the individual, organization program, or the organization as a whole. For
example, the results of the POS within the Management Information System of Arduin can, at any
moment in time, be depicted in raw score or percentile for each client, each program, or for the
entire organization. Comparisons can easily be done between any point in time. This information is
secured behind passwords, available only to authorized people within the organization.
From the individual POS profiles for example a psychologist involved in the support of a person
can see first the QOL profile (in raw scores), how this profile compares with the other clients of the
organization (in percentile scores), and the qualitative comments. It is his task to advice the client /
personal assistant on the needed supports. Also the personal assistant gets the outcome information.
It is his task to discuss this with the person or legal representatives and to use this information to
improve the ISP. As a second example, a manager can see the mean QOL scores for all the clients
of a location (in raw scores), and what the average QOL score is of all the clients of that location
in relation to the other clients of the same organization (in percentile scores). These data are
important to analyse and discuss and thus can be used for quality improvement such as discussing
which additional competencies are needed for the staff of this location. Third, one can see the
average QOL score of all the clients of an organization (in raw scores). After more rounds of POS
interviews in an organisation one can see the progression overtime, per QOL domain, per age
category, per level of support needs, etc. These data are also important to analyse and discuss for
developing quality improvement strategies that focus on organizational policy and change,
additional competences needed by the staff in general, which courses need to be developed for
clients and staff, and the determination of the significant predictors of personal outcomes.


Thus, the alignment between wishes and goals, assessed support needs as measured by the
SIS, Individual Supports Plan components, and quality of life outcomes as measured with the POS,
creates an excellent opportunity to support people methodically in improving their quality of life.
Besides improving the process of individual planning, measuring QOL creates the conditions for a
Management Information System in which the core business of the organisation, supporting people
and improving the quality of life of the persons it supports, is at the centre: personal outcomes can
thus be used to guide organizational change and improvement.

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