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BLOOD DRAW TOOLKITA resource for individuals with Developmental Disabilities
FEBRUARY • 2019
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Introduction and AcknowledgementsThis initiative has brought together the clinical services of Behaviour Therapists,
Nurse Practitioners as well as other health care professionals who support and
service people with developmental disabilities and Autism Spectrum Disorders
(ASD) in a variety of clinical settings. Their names, areas of expertise, and place of
practice are listed below:
Jessica FoxM.ADS, Senior Behaviour Therapist – Children & Youth Program, Surrey Place, Toronto ON
Kimberley TaylorM.ADS, BCBA, Senior Behaviour Therapist – Adults Program, Surrey Place, Toronto ON
Leeping TaoRN (EC), MN, Nurse Practitioner - Adults Program, Surrey Place, Toronto ON
Editorial Staff / Copy Editor(s) Jessica FoxM.ADS, Senior Behaviour Therapist – Children & Youth Program, Surrey Place, Toronto ON
Kimberley TaylorM.ADS, BCBA, Senior Behaviour Therapist – Adults Program, Surrey Place, Toronto ON
Leeping TaoRN (EC), MN, Nurse Practitioner - Adults Program, Surrey Place, Toronto ON
Review Committee Jessica FoxM.ADS, Senior Behaviour Therapist – Children & Youth Program, Surrey Place, Toronto ON
Kimberley TaylorM.ADS, BCBA, Senior Behaviour Therapist – Adults Program, Surrey Place, Toronto ON
Leeping TaoRN (EC), MN, Nurse Practitioner - Adults Program, Surrey Place, Toronto ON
Contributors to the Blood Daw Tool Kit Initiative Cynthia CabreraSupervisor, Collaborative And Individualized Resources, Transitional Support Services (Adult), Griffin Centre, Toronto ON
Vaso CharitsisCommunications and Marketing Advisor – Communications Department, Surrey Place, Toronto ON
Michael DemiGraphic Design, Surrey Place, Toronto ON
Leonard EdwardsClinical Facilitator, Collaborative And Individualized Resource, Centre for Addiction and Mental Health (CAMH), Toronto ON
Katherine CooperMedical Media St. Michael’s Hospital, Toronto ON
Steven FinlayChief Executive Officer, Surrey Place, Toronto ON
Terri HewittVice President Community Program, Surrey Place, Toronto ON
Malgorzata KisielManager – Diagnostic Laboratories, St. Michael’s Hospital, Toronto ON
Shirley McMillanRN, MN, Clinical Nurse Specialist, Surrey Place - Adults Program, Toronto ON
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Suzanne MeagherDirector – Children & Youth Program, Surrey Place, Toronto ON
Antonie MentoneSt. Michael’s Hospital, Toronto ON
Maria D’SouzaSt. Michael’s Hospital, Toronto ON
Louise NgDirector – Adult’s Program, Surrey Place, Toronto ON
Katherine RidolfoCoordinator of Family Support, Community Living Toronto, Toronto ON
Elizabeth ScottExecutive Vice President Clinical Programs, Surrey Place, Toronto ON
Dr. William SullivanMD, PhD, Medical Services, Surrey Place, Toronto ON
June WatkinsLaboratory Administration – Diagnostic Laboratories, St. Michael’s Hospital, Toronto ON
AcknowledgementsWe would like to acknowledge the sponsors of the
Blood Draw Tool Kit Initiative, Surrey Place for its
support of this initiative since 2013.
A special thank you to those listed in the prior pages
who have contributed to the development, design
and review of this tool kit. Thank you also to parents
of clients living with developmental disabilities and/
or autism spectrum disorders, and caregivers who
have contributed generously in various ways to the
review of this project.
On behalf of all those who have contributed to
this project, we hope that this tool kit will help, in
some way, to improve the health and well-being of
individuals living with developmental disabilities
and/or autism spectrum disorders.
Sincerely,
Jessica Fox & Kimberley Taylor
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About the Blood Draw Tool Kit InitiativeThis tool kit was created with the intent to support in the successful completion of
a blood draw (also known as venipuncture) procedure for an individual who has a
fear of such procedures. Many individuals exhibit different behaviours (e.g. crying,
screaming, refusal, hitting, kicking, etc.) when they are told of upcoming blood
work and/or are exposed to certain related environments and items (i.e. nurse/
phlebotomist, needle, waiting room).
This type of fear, called blood-injury phobia, is very common in the general
population (10%) (Raghvendra et al., 2010). This prevalence is likely underestimated
due to the lack of reporting of such fears and/or individuals failing to seek
appropriate medical care. Further, it is estimated that the prevalence is much higher
among individuals with a developmental disability due to additional deficits.
In general, individuals often become fearful of not only the sight of the needle or
injection, but also from being exposed to physical restraint of themselves or others
(Raghvendra et al., 2010). Some of the symptoms of blood-injury phobia include
increased heart rate combined with changes in blood pressure, fainting, aggression/
physical resistance, avoidance of the environment, and flight/escape from the
current situation (Raghvendra et al., 2010). These symptoms are more likely to
occur when physical restraint is used.
In addition to physical restraint, chemical restraints, such as anxiety-reducing
medication or general anaesthesia, are often used as immediate first-line
interventions (Raghvendra et al., 2010). Restraint of either type, however, does not
reduce the existing phobia on a long-term basis as it only masks the fear and can
actually result in increased fear over time. Ultimately, the persistence of needle
phobia over time can result in the individual avoiding any or all necessary medical
treatment, leading to poor health outcomes. Behavioural interventions including
systematic desensitization focus on teaching the individual to tolerate blood draw
procedures by removing the fear response and ensuring consistent success of
such procedures while remaining calm. Behavioural interventions can offer a more
proactive approach as opposed to the reactive approach often used in medical
settings.
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Systematic Desensitization ProcedureThe following procedure is intended as a guideline for
desensitizing an individual to blood draw procedures.
Depending on the level of functioning, the extent of the fear
itself, as well as the frequency and consistency of practice,
this procedure may vary in terms of length of time in order
for successful results to be obtained. Please ensure to read
the entire procedure and ensure all necessary materials are
prepared before beginning. This procedure may be carried out
by any type of caregiver, such as a parent, sibling, guardian,
support/respite staff, friend, or involved medical professional.
Phase 1: Exposure and Teaching A video, as well as a social story will be used to expose the individual to the steps
that he/she would go through in the blood draw process. The individual will be
taught muscle tension and relaxation strategies while in a calm state so that he/
she will be able to reliably use these strategies to prepare prior to engaging in
the training procedure, as well as to encourage him/her to remain calm during
subsequent steps of the procedure.
Step # Objective/Expectation Start Date Acquired Date
1 Comply appropriately to sit down in the home environment to review the relaxation strategies
2 Comply appropriately with reviewing relaxation strategies
3 Comply appropriately with reviewing the social story related to venipuncture
4 Comply appropriately with reviewing the video related to venipuncture
5 Comply appropriately with travelling with assistance to the clinic site
*Use first/then board with visuals at this point*
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Phase 2: Blood draw (venipuncture) process This phase should be carried out within a new/different medical setting to which
the individual has never been exposed. During this phase, the individual will
progressively move through various steps of exposure to both the feared object
(i.e. needle) and the blood draw procedure. Movement from one step to the next
will be based upon the individual’s ability to remain calm according to criteria using
an arousal rating scale (see below) for a specified duration of time and number of
sessions.
NOTE: All steps from Phase 1 must be repeated each session before beginning the steps below.
Step # Objective/ Expectation Start Date Acquired Date
1 Enter waiting room
2 Register
3 Sit down on chair
4 Wait to be called
5 Stand up from chair
6 Walk towards treatment area/room
7 Sit down in “chair”
8 Wait for nurse to prepare materials
9 Places arm on arm-rest & nurse may check vein
10 Elastic band placed onto arm
11 Nurse checks personal information
12 Nurse cleans skin with alcohol
13 Nurse picks up needle
14 Needle point touches surface of skin
15 Needle punctures skin
16 Waits for blood to be collected into testing tube(s)
17 Needle is removed from arm
18 Cotton ball and bandage/tape are applied
19 elastic is released
20 Pressure is applied to the site
21 Individual waits until nurse says its ok to leave
22 Individual exits room/area
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Phase 3: Generalization Once the individual is able to remain calm during the entire blood draw procedure
and meet criteria with the support of additional staff (if applicable), the steps that
follow will encourage generalization and maintenance of these skills across other
people, places, and time. This will ensure that in the future if any changes occur
such as a different environment, who goes with the individual to the appointment,
or there is an emergency, that the individual will continue to be able to successfully
complete the steps of the blood draw procedure which has already been learned.
NOTE: Repeat steps from Phase 1 each session before beginning the steps below.
Target # Objective/Expectation Start Date Acquired date
1 *if applicable*
Fade out support staff and fade in primary caregiver (within current setting) carrying out steps 1-22
2 *if applicable*
Fade out primary caregiver as support to increase independence (within current setting) carrying out steps 1-22
3 Complete steps 1-22 within a known blood lab (eg. Family physician’s office or other)
4 Complete steps 1-22 generalizing within a novel setting such as a local hospital
MAINTENANCE *COMPLETE THESE STEPS IF BLOOD WORK IS NOT COMPLETED REGULARLY*
5 Following 1 month, complete steps 1-22 within any learned or novel setting
6 Following 3 months, complete steps 1-22 within any learned or novel setting
7 Following 6 months, complete steps 1-22 within any learned or novel setting
8 Following 1 year, complete steps 1-22 within any learned or novel setting
Materials• Square breathing visual
• Progressive Muscle Relaxation
(PMR) visual
• Squeeze ball, or other preferred
fidget toys
• Arousal rating scale
• Social story (My Blood Test)
• Arm diagram
• Video
• Data sheets
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Preference AssessmentIn order to determine items or activities that will motivate
the individual to proceed through the steps of this procedure,
it is necessary to complete a preference assessment prior
to starting with Phase 1 of the above procedure. Follow the
steps below:
Step 1:1. Fill out the Reinforcer Assessment for individuals with Severe Disabilities
(RAISD) (see attached). Ensure that the person completing the assessment
knows the individual well.
2. Using the items/activities from the hierarchy generated, gather relevant items
and activities for Step 2.
Step 2:a. Using the items/activities from the hierarchy, present a group of 2-3 items to the
individual at one time in order to determine highest level of preference. Record
the most preferred choice from this group.
» Pick a time of day when the individual is calm and likely to be motivated to
engage with the items/activities. This should be completed in advance and not
just prior to starting a training session.
» Start with items that the individual has been known to have a strong
preference towards in the past and that are easily portable.
b. Continue to present groups of 2-3 items/activities until all items from the
hierarchy list have been presented. Record the most preferred choices from each
subsequent group. Keep this list of highly preferred items for later.
Step 3:a. When starting a training session, tell the individual what they are about to do (i.e.
according to current step in desensitization procedure). Use visuals such as first/
then board with pictures, provided in attachments.
b. Present the top 2 highly preferred items from this second list generated above
and ask the individual to choose (verbally or physically) what they would like to
earn after completing relevant steps of the procedure.
c. Ensure that item/activity chosen, as well as visuals, are available to be presented
to the individual upon completing relevant steps of the procedure (see delivery of
reinforcement below).
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d. In addition to the highly preferred chosen item, ensure to bring one other
less preferred item from the original hierarchy, as a back-up (see Delivery of
Reinforcement --differential reinforcement below).
* Do not proceed with training session if no preferred items are determined *
Indicators of high preferenceIndividuals show preference in various ways, depending on their level of
functioning. The following information outlines how to identify that an individual
finds something to be highly preferred, beyond verbal communication.
APPROACH: Reaching, walking toward, gazing toward item/activity.
ENGAGEMENT: For activities, amount of time played with or talked about.
CONSUMPTION: For food/drink, if they consume the item or not.
Delivery of ReinforcementIn order to effectively and efficiently reinforce (i.e. reward) the completion of steps
of the training procedure, it is important that the chosen highly preferred item is
presented in a very specific way:
IMMEDIACY: Give the individual access to the preferred item/activity as soon as
the current steps of the training procedure are completed (ideally within only a
few seconds).
CLARITY (DISTINCTIVE): Ensure that what is said or what is given as a reward/
reinforcer for successful completion of the training procedure is clearly
different than other things said or given to the individual typically. To increase
the clarity of reinforcement, always combine the delivery of the reward with
descriptive social praise (e.g. give the toy while saying “Great job! You had your
blood test!”).
VARIATION: Ensure to use many different types of reinforcers/rewards from
session to session in order to keep the individual motivated and reduce the
likelihood that they will get bored with the item or that the value of that item
will fade, making it ineffective at reinforcing the expected behaviour(s).
CONSISTENCY: Ensure to reinforce/reward the successful completion of the
training procedure every session in order to maximize learning potential.
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DIFFERENTIAL REINFORCEMENT: It is important that the individual receives
the highest quality and amount of reinforcement for successfully completing
the training procedure and a lesser quality and amount of reinforcement for
unsuccessful attempts. Give the individual the highest preferred item/activity
from your preference assessment above if they are able to complete the current
step of the training procedure successfully. Give the individual one of the less
preferred items instead, if they do not successfully complete the current step of
the training procedure.
Arousal Rating ScaleThe following is a sample of an arousal rating scale that may
be applicable to the individual. This is a Likert-type rating
scale that is intended to be used for assessing and scoring
level of arousal throughout each phase of the training
procedure, as well as for data collection purposes. Based on
the ratings recorded and a pre-determined criteria (below),
the individual will move on to subsequent steps of the
program.
State Description Score
CalmClient will engage in minimal movement with neutral or happy expression. ➊
SadClient will engage in whining and/ or crying which may be combined with tears. ➋
TenseClient will engage in rocking, shaking and/or clenching of his body, which may or may not occur in combination with crying/whining.
➌
Agitated/ProtestingClient will engage in fast, jerky movements with significant displacement from his calm position. ➍
Acting out aggressivelyClient attempts to or successfully engages in aggressive acts such as hitting, kicking, pinching, biting, scratching or grabbing (alone or in combination).
➎
If changes are necessary to the above sample scale this can be done with the
attached blank copy that can be filled out according to how a particular individual
escalates.
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Data CollectionBefore starting a new phase it will be appropriate to
determine if the individual can already complete any of the
steps. This can be done by proceeding through the steps of
the training procedure with the individual and determining
if they complete each step of that phase according to the
criteria below. Once criteria cannot be met for a particular
step (i.e. the individual escalates, refuses or does not have the
skills to move forward), this will be the step where the training
procedure begins. This will ensure that the training procedure
will not frustrate the individual and will work from his/her
current level of success.
A data sheet has been provided for each phase (see attachments). Proceeding
from one step to the next will be based upon the requirement that criteria outlined
below are fulfilled. A maximum of up to three trials (i.e. attempts) can be carried out
within one daily session following the outlined criteria, allowing the individual ample
opportunity to practice the skill.
CriteriaArousal rating scale:
Using the arousal rating scale tailored to the individual, follow the steps of the
training procedure according to each phase outlined above. The individual will
be expected to remain at an arousal level no higher than a rating of 2 before the
individual can move on to the next step of that phase.
If the individual later completes a step that has already been learned and he/she
reaches any arousal rating higher than 2 then the training procedure must be
stopped and the individual must be brought back to the previous successful step
on the next attempt to ensure the individual’s safety, and so as not to increase
agitation.
Arm diagram: From Phase 2 onward, the individual will be expected to keep his/her arm within the
allowable limits of the arm diagram (see attached). This will include that his/her arm
can move from the original position (white area) to the outer limits of the adjoining
area (yellow area). Once the individual’s hand and/or arm moves into the red area,
this will indicate that the attempt should end.
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ReferencesFisher, W. W., Piazza, C. C., Bowman, L. C., & Amari, A. (1996). The Reinforcer
Assessment for individuals with Severe Disabilities (RAISD). Integrating
caregiver report with a systematic. Choice assessment to enhance
reinforcer identification. American Journal on Mental Retardation, 101, 15-25.
Raghvendra, S., et al. (2010). Trypanophobia – An Extreme and Irrational Fear of
Medical Procedures: An Overview. International Journal of Pharmaceutical
Sciences Review and Research, 4 (1), 18-21.
Doan, B.D. (1994). Relaxation Training and Anxiety Management for Children with
PDD and Their Parents. Workshop Developed for Geneva Centre for Autism,
Toronto.
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Decision Tree
14
Arm Diagram
16
Retrieved from: http://visuals.autism.net/main.php?g2_itemId=138
17
Progressive Muscle Relaxation visual, retrieved from: http://visuals.autism.net/main.php?g2_itemId=92 Doan, B.D. (1994). Relaxation Training and Anxiety Management for Children with PDD and Their Parents. Workshop Developed for Geneva Centre for Autism, Toronto.
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AttachmentArousal Rating
State Description Score
➊
➋
➌
➍
➎
Data Sheet - Phase 1Step # Objective/Expectation Start Date Acquired Date
1 comply appropriately to sit down in the home environment to review the relaxation strategies
2 comply appropriately with reviewing relaxation strategies
3 comply appropriately with reviewing the social story related to venipuncture
4 comply appropriately with reviewing the video related to venipuncture
5 comply appropriately with travelling with assistance to the clinic site
*Use first/then board with visuals at this point*
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Data Sheet - Phase 2Date: Staff:
Step # Objective / Expectation
Arousal Rating
Movement Outside Arm
Diagram
1 Enter waiting room 1 2 3 4 5
2 Register 1 2 3 4 5
3 Sit down on chair 1 2 3 4 5
4 Wait to be called 1 2 3 4 5
5 Stand up from chair 1 2 3 4 5
6 Walk towards treatment area/room 1 2 3 4 5
7 Sit down in “chair” 1 2 3 4 5 Y / N
8 Wait for nurse to prepare materials 1 2 3 4 5 Y / N
9 Places arm on arm-rest & nurse may check vein 1 2 3 4 5 Y / N
10 Elastic band placed onto arm 1 2 3 4 5 Y / N
11 Nurse checks personal information 1 2 3 4 5 Y / N
12 Nurse cleans skin with alcohol 1 2 3 4 5 Y / N
13 Nurse picks up needle 1 2 3 4 5 Y / N
14 Needle point touches surface of skin 1 2 3 4 5 Y / N
15 Needle punctures skin 1 2 3 4 5 Y / N
16 Waits for blood to be collected into testing tube(s) 1 2 3 4 5 Y / N
17 Needle is removed from arm 1 2 3 4 5 Y / N
18 Cotton ball and bandage/tape are applied 1 2 3 4 5 Y / N
19 elastic is released 1 2 3 4 5 Y / N
20 Pressure is applied to the site 1 2 3 4 5 Y / N
21 Individual waits until nurse says its ok to leave 1 2 3 4 5 Y / N
22 Individual exits room/area 1 2 3 4 5 Y / N
NOTES:
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Data Sheet - Phase 3Target#: Date: Staff:
Step # Objective / Expectation
Arousal rating
Movement outside arm
diagram
1 Enter waiting room 1 2 3 4 5
2 Register 1 2 3 4 5
3 Sit down on chair 1 2 3 4 5
4 Wait to be called 1 2 3 4 5
5 Stand up from chair 1 2 3 4 5
6 Walk towards treatment area/room 1 2 3 4 5
7 Sit down in “chair” 1 2 3 4 5 Y / N
8 Wait for nurse to prepare materials 1 2 3 4 5 Y / N
9 Places arm on arm-rest & nurse may check vein 1 2 3 4 5 Y / N
10 Elastic band placed onto arm 1 2 3 4 5 Y / N
11 Nurse checks personal information 1 2 3 4 5 Y / N
12 Nurse cleans skin with alcohol 1 2 3 4 5 Y / N
13 Nurse picks up needle 1 2 3 4 5 Y / N
14 Needle point touches surface of skin 1 2 3 4 5 Y / N
15 Needle punctures skin 1 2 3 4 5 Y / N
16 Waits for blood to be collected into testing tube(s) 1 2 3 4 5 Y / N
17 Needle is removed from arm 1 2 3 4 5 Y / N
18 Cotton ball and bandage/tape are applied 1 2 3 4 5 Y / N
19 elastic is released 1 2 3 4 5 Y / N
20 Pressure is applied to the site 1 2 3 4 5 Y / N
21 Individual waits until nurse says its ok to leave 1 2 3 4 5 Y / N
22 Individual exits room/area 1 2 3 4 5 Y / N
NOTES:
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Reinforcement Assessment for Individuals with Severe Disabilities (RAISD)
Student’s Name:
Date:
Recorder:
The purpose of this structured interview is to get as much
specific information as possible from the informants (e.g.,
teacher, parent, caregiver) as to what they believe would be
useful reinforcers for the student. Therefore, this survey asks
about categories of stimuli (e.g., visual, auditory, etc.). After
the informant has generated a list of preferred stimuli, ask
additional probe questions to get more specific information on
the student’s preferences and the stimulus conditions under
which the object or activity is most preferred (e.g., What
specific TV shows are his favorite? What does she do when she
plays with a mirror? Does she prefer to do this alone or with
another person?)
We would like to get some information on ’s preferences
for different items and activities.
1. Some children really enjoy looking at things such as a mirror, bright lights, shiny objects, spinning objects, TV, etc. What are the things you think most likes to watch?
Response(s) to probe questions:
2. Some children really enjoy different sounds such as listening to music, car sounds, whistles, beeps, sirens, clapping, people singing, etc. What are the things you think
most likes to listen to?
Response(s) to probe questions:
3. Some children really enjoy different smells such as perfume, flowers, coffee, pine trees, etc. What are the things you think most likes to smell?
Response(s) to probe questions:Fisher, W. W., Piazza, C. C., Bowman, L. G., & Amari, A. (1996). Integrating caregiver report with a systematic choice assessment. American Journal on Mental Retardation, 101, 15–25.
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4. Some children really enjoy certain food or snacks such as ice cream, pizza, juice, graham crackers, McDonald’s hamburgers, etc. What are the things you think
most likes to eat?
Response(s) to probe questions:
5. Some children really enjoy physical play or movement such as being tickled, wrestling, running, dancing, swinging, being pulled on a scooter board, etc. What activities like this do you think most enjoys?
Response(s) to probe questions:
6. Some children really enjoy touching things of different temperatures, cold things like snow or an ice pack, or warm things like a hand warmer or a cup containing hot tea or coffee. What activities like this do you think most enjoys?
Response(s) to probe questions:
7. Some children really enjoy feeling different sensations such as splashing water in a sink, a vibrator against the skin, or the feel of air blown on the face from a fan. What activities like this do you think most enjoys?
Response(s) to probe questions:
8. Some children really enjoy it when others give them attention such as a hug, a pat on the back, clapping, saying “Good job”, etc. What forms of attention do you think
most enjoys?
Response(s) to probe questions:
9. Some children really enjoy certain toys or objects such as puzzles, toy cars, balloons, comic books, flashlight, bubbles, etc. What are ’s favorite toys or objects?
Response(s) to probe questions:
10. What are some other items or activities that really enjoys?
Response(s) to probe questions:
Fisher, W. W., Piazza, C. C., Bowman, L. G., & Amari, A. (1996). Integrating caregiver report with a systematic choice assessment. American Journal on Mental Retardation, 101, 15–25.
23
After completion of the survey, select all the stimuli which could be presented or
withdrawn contingent on target behaviors during a session or classroom activity
(e.g., a toy could be presented or withdrawn, a walk in the park could not). Write
down all of the specific information about each selected stimulus on a 3” x 5” index
card (e.g., likes a female adult to read him the ‘Three Little Pigs’ story.) Then have
the informant(s) select the 16 stimuli and rank order them using the cards. Finally,
list the ranked stimuli below.
1. 9.
2. 10.
3. 11.
4. 12.
5. 13.
6. 14.
7. 15.
8. 16.
Notes:
Fisher, W. W., Piazza, C. C., Bowman, L. G., & Amari, A. (1996). Integrating caregiver report with a systematic choice assessment. American Journal on Mental Retardation, 101, 15–25.
Surrey Place2 Surrey Place
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www.surreyplace.ca
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