Individual Support Plans: enhancing personal outcomes

7/27/2019 Individual Support Plans: enhancing personal outcomes

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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 deliveryof 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 thedevelopment and implementation of their individual supports plans (ISP). Arduin developed an


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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, qualityof 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 Plancomponents, 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.


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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 dialoguewith 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 financialmargins 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 clintTo 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

ImplementationThose involved in the support of the person: the

natural network and the professional supportworkers


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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 6where 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 personThe 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 theirmeetings. 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


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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 personThe 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 tothe

person), and 2) with the support workers to discuss what are the most important support needs in

their opinion (important forthe person). This prioritizing is done in the application for the ISP.


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Component 3: Developing an Individual Supports PlanThe 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 canfully 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 SupportStrategies

Anticipated Effects

Personal Development Facilitate personal goal

setting

Implement self-

management, self-

evaluation, self-instruction

programs

Build on personal strengths

(e.g. practical skills, socialskills, 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 increasessense 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 devicesInvolve in social skills

-Increases social

engagement


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training program

Involve in peer-group (e.g.

PALS, Best Buddies)

Maximize family

involvement

Emphasize personalstrengths (e.g. attitudes,

skills, knowledge sharing)

-Increase social networks

-Increases perceivedsocietal 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

processInvolve 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 genericemployers

-Increase economic self-

sufficiency and sense of

accomplishment


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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 screenthe 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: ImplementationIn 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 supportneeds 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: MonitoringIt 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 ofimproving 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 PlanEvery 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 thePersonal Outcomes Scale (POS) results in the assessment of QOL indicators related to the


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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 thesame 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.


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4. Conclusion

The use of these evidence-based outcomes includes multiple purposes in the Arduinprogram, 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 fordeveloping 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 thePOS,

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 canthus be used to guide organizational change and improvement.


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Documents

Individual Support Plans: enhancing personal outcomes