One-Stop Service for Parents of Newly Diagnosed Autistic Children in Singapore Proposal
Transcript of One-Stop Service for Parents of Newly Diagnosed Autistic Children in Singapore Proposal
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A one-stop service to support parents of newly diagnosed autistic children (0 6 years old) in Singapore
1. Introduction
1.1 Health Problem to be addressedAutism Spectrum Disorder (ASD) was defined by the American Psychiatric Association (1994) as a
developmental disorder. It covers the main three groups of Autism, Aspergers Syndrome and PervasiveDevelopmental Disorder. This disorder is characterized by social interaction impairment (for example: lack of
emotion reciprocity), communication impairment (e.g. total lack or delayed development of verbal skills) and
notably restricted and repetitive patterns of behaviours and activities1. Only started to be studied in details in the1970s, ASD still remains as poorly understood. Children with autism are often presented with numerousdifficulties in communicating and learning. Because of that, many illnesses acquired by autistic children are
frequently overseen or missed: from normal developmental milestone in dental care too complex mental health.It is known that high proportion of autistic children had at least one psychiatric disorder besides autism
2. These
disorders are specific phobias, attention deficit hyperactivity (ADHD), separation anxiety, social phobias,bipolar and depression. Depression in autistic children and adolescent has been known to associate with the
likelihood of self-inflict or even suicidal attempts (Sovner & Hurley 1982a, 1982b cited by Lainshart & Folstein1994). In many countries, these autistic children grow up having with very limited life opportunities especially
in education and employment, which is the direct result of the social stigma of autism as a psychiatric condition.Therefore, there have been efforts ongoing to advocate for this group of population
3-5.
Moreover, several studies have associated taking care of autistic children parents depression, stress andanxiety
3, 6-8, especially during the early phrase after diagnosis. This difficult period has been known to affect the
parents mental health greatly with more severe impact on the mothers7. Furthermore, some parents of autistic
children described experiences of social rejection and subsequently social isolation. In some cases, family
break-down was noted when domestic violence and marriage failure occurred. The intense impact of autismdiagnosis and problems associated with the condition has been also expressed by siblings in the same family as
they were partly neglected9. Without an effective supportive network, the parents struggle to attain treatment
for their autistic child and at the same time, balance their work and carry out parenting tasks to other children10
.
1.2 Target population
The Republic of Singapore is the smallest South East Asia island state off the southern tip of Malay Peninsula.
As of 2009, Singapore population stood at 4.8 million with 36% was foreigners. The state is well-known for itsefficiency and stability. Singapore government provides an extensive education and health care system thatboasting 84% health insurance coverage.
According to estimation from Autism Association (Singapore), the autism prevalence rate in Singapore is
24,000 individuals, of which 5,472 are children under the age of 19 years. Furthermore, an approximation of216 new cases of children with autism is diagnosed annually. Due to the multiracial characteristic of Singapore,
most of the autistic cases detected in 2001 were of Chinese ethnic (85%), followed by 6% Malay, 5% Indianand 4% Eurasian
11.Most of the cases were diagnosed by psychologists or paediatricians. A large proportion of
the autistic children in Singapore are boys (81%), which is in agreement with the international report of 3-4boys to one girl ratio
11. Majority of the autistic children had very low or not at all verbal skill with 71% of them
spoke less than 5 words. In terms of the parents socioeconomic status, the number of cases increased withhigher income level of both working parents. Many of them reported frustration with dealing with their autistic
child.
Thus, the target population of this program are parents of newly diagnosed autistic children (0-6 years old)
1.3 Justification/Significance and Expected Outcome
Due to the lack of advocacy, there has been inadequate support and attention from government and community
to family and children with ASD. This is important as a number of studies mentioned the effectiveness offamily setting in helping autistic childrens development
4, 12-18. In a study by Bernard-Opitz (2001), verbal
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skills of the autistic children in Singapore were severely underdeveloped as the indirectly result of themultilingual context in Singapore in which a few languages can be used at home. In addition, 28% of the
autistic children were taken care of by foreign domestic workers who did not have language skills. The parentshave limited understanding of their childrens condition and so physical punishment was used frequently (69%
of child educating methods). Very few parents sought therapists to improve their childs sensory-motor andspeech skills. Instead, some parents were known to turn to religious/spiritual healers for help. Most of
Singapore autistic children were often neglected in which they were fed and put in front of TV for 8 hours
straight without much learning stimulation from their parents11. In term of the parents themselves, many studiesshowed high level of anxiety and depression while raising their autistic children
3, 5, 19-21. Furthermore, there has
been no public program actively seeks out and provides assistance for family with autistic child in Singapore.
Most of the existing programs are fragmented, limit at day childcare or one day training by private consultancyservices
22. Moreover, the quality of these services has not been evaluated by any appointed government agency
up to date. Many parents voiced out concerns for a one-stop service program that could cover wider range ofsupport instead of the current patch-work services by different welfare volunteer organisations (WVOs) and
private consultancy companies23
.Recognizing an increasing trend of children with autism diagnosed every year in Singapore and their parents
need, this program is expected to provide a multi-dimensional service including counselling and support theparents of autistic children upon the child diagnosis. We aim to educate the parents of newly diagnosed autistic
children to understand autistic behaviours, be able to perform regularly home-centred method to stimulate theirautistic childs learning ability within 2 years from the beginning of the program and we also provide other
parents supports.
2.Goal and Objectives of the program2.1 Program goalThe long term goal is to decrease the number of highly dependent autistic individuals (above 19 years old) by
improving support to family with autistic children with early intervention so they will ultimately be able toadapt and live with minimal support within community in Singapore.
2.2 Objectives2.2.1 Objective 1
To strengthen understanding of at least 70% of parents of newly diagnosed autistic children (below the age of 6)
of autism in terms of common autistic behaviours, causes of autism, the childs strength and the importance offamily interaction by end of 2012.2.2.2 Objective 2
To empower and inform at least 70% of the parents newly diagnosed autistic children (below the age of 6)about all the 30 support services available for autistic children and encourage social interactions and
involvement in self-help parents group by December 2012.2.2.3 Objective 3
To equip at least 40% of the parents/caregivers with the suitable home training/ learning stimulation methods sothey can perform at least 2 methods at home regularly by December 2012.
2.2.4 Objective 4To improve at least 30% of the parents mental health by reducing stress through counselling on their childs
legal rights and financial support by end of 2012
3.Selection of strategies/intervention/methods
3.1 Program logic
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Table 1: Program Logic
Inputs Activities Outputs
Outcomes
ShortIntermedia
te
Long
PersonnelProgram managers
Experts (psychiatrists,developmental
paediatricians)Therapists (speech
therapists,occupational
therapists, nutritionists,sensory-motor
therapists.Training
moderators/facilitators
Legal aid personnelMaterialsPrinting and IT
equipmentsAudiovisualequipments
Seminar/small groupdiscussion rooms
StationeriesTransportation
Funding
Seminars forparents about
autism: cause,common
behaviours, andthe importance of
familyinteractions
Invitationcards/calls sent to
the parentsParents doubt
clarified byautism experts
Parents improveawareness of
their childscondition
At least40% of the
Singaporean parents of
newlydiagnosed
autisticchildren
educated to
understandtheir child
autistic
condition,be able to
performregularly at
least 2home-
centredmethods to
stimulatetheir
autisticchilds
learningability and
they areaware of
otherparents
supports
within 2years from
the
beginningof the
program.
The longterm goal is
to decreasethe number
of highlydependent
autisticindividuals
(above 19years old)
byimproving
support tofamily with
autistic
childrenwith earlyintervention
so they willultimatelybe able to
adapt andlive with
minimalsupport
withincommunity
inSingapore
Organizingintroducing
sessions and trip
to the supportfacilities
Sessionsconducted and
trips completed
Parents ofautistic children
aware well of
facilitiesavailable andutilize them
Workshop ofsmall group of
parents to discusseffective daily
routine andappropriate
dietary regime
Workshopconducted
regularly byfacilitator/nutritio
nist for activelyinvolved parents
Parents are ableto plan suitable
routine and dietfor their autistic
child
Introduction
workshop abouthome-based early
interventionmethods
Workshop held
regularly by afacilitator
Parents gain
awareness ofavailable
learningstimulating
methods toapply at home
Workshoptraining for small
group ofparents/caregiver
s on suitable
home-basedinterventionmethods
Workshopconducted by
autism expertsand therapists
Trained parentsare able to
perform at least2 methods at
home regularly
Counsellingsessions for
individual orsmall group of
parents regardingtheir child legal
Sessionconducted
regularly andupon request by
legal aidpersonnel
Increaseaccessibility and
awareness ofparents to
understandingof their childs
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rights legal rights
Counsellingsessions for
parents onmanaging
financial andseeking financial
support forraising children
with specialneeds
Sessionconducted
regularly andupon request
Parents are ableto manage their
finance andknow where to
seek assistanceif they need to
Organize parentsself-help group
roundtable toexchange ideas
Roundtable talksheld with actively
engaged parents.
Parents meet,share their
concern andencourage one
another
3.2 Description of strategies
Up to date, there has been no substantial evidence for any cure for autism24
. Many programs such as theHolding Therapy, Daily Life Therapy/Higasi School, Option Approach, etc have claimed to effectively enable
the autistic children to live independently by putting them through vigorous school curriculum or creatingfamiliar environment. However, research is still required to evaluate the long term outcome and the
applicability of these programs16
.Other therapies involving drug treatment, special dietary and intensive appliedbehaviours analysis focus on the child have been known to be effective to certain extents, especially study trials
by Lovass (1987) and Koegel & Koegel (1995). Whilst the programs were effective, their high cost has been ofconcerns to many autism experts and parents. In concordance with other studies, these programs however
emphasized the importance of early intervention with the parents playing a changing agent role12, 18, 25-26
Therefore, family-based and parent-focused intervention methods are the backbone in this program.
Strategy for objective 1: strengthen understanding of parents of newly diagnosed autistic children (below theage of 6) of autism
Upon diagnosis of a child, each family reacts differently. More often, the parents have difficulty in diagnosisresolution; are devastated and helpless. Many parents voiced up their needs of having detailed explanations by
experts in term of information provided specifically of their childrens behaviours and strategies to support thetreatment that child might need to undergo
27-29. Therefore, there should be engagement of the professional in
delivering the initial and subsequent assistance to the parents at early stage. This method was employed withsome success by The Help! Program constructed by the United Kingdom National Autistic Society
16. Once the
parents gain better understanding of their autistic childs behaviours, they could reduce physical punishment inchild up-bringing, which was very high among Singaporean parents (69%)
11.
Strategy for objective 2: empower and inform parents about all the support services available for autisticchildren and encourage social interactions and involvement in self-help parents groupEstablishing a suitable intervention for a specific child is never easy for both professional and the decision
maker the parents of the child. Without experts help, besides trying to understand the condition by siftingthrough mountain of literature on results of different treatment trial, the parents need to identify available
outpatient psychotherapy and other therapies. This challenge could be overcome with an effective system ofdelivering information from our program. This strategy enables and widens familys choices of support and
assists them in navigating the service system that can be overwhelming at the time16, 30
. Furthermore, theinvolvement of parents into self-help group allows them to discuss freely and communicate about their concerns
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of their children with certain common level of understanding31
. Therefore, the program can provide someflexibility and encourage the parents to be more socially active.
Strategy for objective 3: equip parents/caregivers with the suitable home training/ learning stimulation methodsso they can perform at least 2 methods at home regularly
Because most of autistic children were diagnosed early in Singapore (60% by the age of three years), it is stillpossible to improve their delayed development progress. Home-centred early intervention methods have been
employed with positive outcomes in many well-known programs such as the Hanen Program (Canada), or
Oregon Statewide Regional Program Autism Training Sites (the US) and the EarlyBird (the UK, New Zealand).Funded by Canadian government, The Hanen Program has been known to specialize in training parents to assistchildren with learning disabilities such as Downs syndrome and ASD. The program offers practical tools to
parents/caregivers so that daily activities could be learning stimulation for their autistic children and thusenhance the childrens communication development
32. Similarly, the EarlyBird was designed to facilitate
parents understanding and good handling of their autistic childrens behaviours with methods suitable for dailyschedule
12, 16, 31-32.
Strategy for objective 4: improve parents mental health by reducing stress through counselling on their childslegal rights and financial support
A number of studies have demonstrated that parents of autistic children are under tremendous stress rearingchildren with special needs. Therefore, this strategy is to help the parents to manage other aspects of bringing up
a child with certain disabilities. Based on a similar notion, a program by Monash University called Pre-Schoolers with Autism was developed to focus on the parents and has shown significantly positive outcome
5
Another model with the whole-life approach is TEACH (Treatment and Education of Autistic and RelatedCommunication Handicapped Children) by University of North Carolina. The program caters to young children
and their family up to their adulthood and has been shown to have great impact on the autistic individuals andtheir family
16. Therefore, providing legal information and counselling will be a part of this programs strategy.
4.Log frame
Table 2: Log Frame
Performance Indicators Mean of verification Assumptions
Goal:To decrease thenumber of highly
dependent autisticindividuals (above 19
years old) byimproving support to
family with autisticchildren with early
intervention so theywill ultimately be able
to adapt and live withminimal support
within community inSingapore.
Lower percentage ofinstitutionalized autisticindividuals
Higher number ofemployed autistic people
Increase in number ofautistic students in higher
educationinstitutions/vocational
training schools
Data from the Institute ofMental Health
Data from ENABLE fundreport
Data from MYCS
Data from VWOs
Continuous supand funding fromgovernment
Reduced sigma femployer encourmore autistic ad
in workfoparticipation
Purpose:
Effective training andcounselling of parents
of newly diagnosedautistic children in
At least 50% of the parents ofthe autistic children can
understand the developmentaldisorder well and can apply at
Questionnaires indifferent languages
Videotapes of home-
The children are to learn skills (ve
or mcoordination)
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Singapore so they can
be self-reliant inmanaging and
assisting their autisticchild
least 1 teaching method in
educating and managing theirautistic child
teaching sessions The parents engin the prog
regularly and able to perf
acquired learnstimulating met
in long term at ho
Objectives:1. To strengthenunderstanding of at
least 70% of parents ofnewly diagnosed
autistic children(below the age of 6) of
autism in terms ofcommon autistic
behaviours, causes ofautism, the childs
strength and theimportance of family
interaction by end of2012.
Score on questionnaire
Percentage of parentsunderstand their childsautism behaviour pattern
and can identify theirchilds strength
Number of questionnairescompleted
The parents are wilto do questionnaire
participate in trainsessions
2. To empower and
inform at least 70% ofthe parents about all
the 30 support servicesavailable for autistic
children and
encourage socialinteractions andinvolvement in self-
help parents group byDecember 2012
The usage of supportfacilities (frequency and
duration)
Score on questionnaires
Record of usage fromthe support service
facilities
Feedback on the serviceavailability from the
parents
Parents actively uti
the support facilities
3. To equip at least40% of the
parents/caregiverswith the suitable home
training/ learningstimulation methods so
they can perform atleast 2 methods at
home regularly byDecember 2012
Specialists evaluation onparents understandingand performance during
interaction with theparents
The number of methods
introduced The parents can perform 2
or more different methods
Experts/Specialistsreview report
Verified checklist ofteaching methods
conducted
Specialists available
The parents corporative
4. To improve at least30% of the parents
mental health byreducing stress
through counselling on
Scores on stress arousalchecklist*
Score on the parentingstress at the beginning and
end of program to
Record of checklist
Form documented bycounsellor
The parents willing to do surve
Family well-being5 years
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their childs legal
rights and financialsupport by end of 2012
evaluate improvement of
the parents mentalwellbeing Index form 6
Outputs:1. The parents
understanding of theircircumstances:
1.1 90% of theparents are able to
understand the causesof autism and stop
blaming themselves
The parents resolution basedon assessment by interviewer
Number of the parents answercorrectly on autism fact quiz
Pre- and post- counsellingquestionnaires filed in
progress report for each case
There is a hpercentage of pare
participation and thave limited knowle
on the nature of disorder
1.2 80% of the parentsare able to identify
common behaviours inautistic children in
general and their child
in particular
Number of the parentsanswer correctly onautism fact quiz
Scores on the behaviourrepertoire checklist
Behaviour diary
Checklist filed with otherquiz results to be reviewed
mid-term and end-term
The parents might hobserved their c
without knowing howdifferentiate betw
normal and auti
behaviours1.3 80% of the parentsare able to understand
family membersinteractions
Family Relation Scale
Counsellors assessmenton the parents
The parents are able tooutline daily routine
Filed assessment
Counsellors report
The parents ooverlook their fami
interactions and impact of those to
the children
2.1 CommunitySupport awareness
All available supportfacilities will be
introduced to 100% ofthe participated
parents
The number of servicesavailable and theirlocations island-wide
The usage of these
facilities
Data from the serviceprovided recorded pre andpost induction
If the parents knmore about
facilities, they actively utilize th
and inform oparents
3.1 Training the
parents the home-teaching techniques so
that 60% of the parentsare able to perform at
least two introducedmethods
The number of coachingsessions
Performance of theparents to be graded by
unbiased evaluator
Record of coachingsessions
Parents performancegrading form filed
The parents are wil
to learn and ableperform and practic
home
4.1 50% of the parentsfeel less stress when
able to cope after 1year and 2 years of
training
Score on Stress ArousalChecklist
Parents feedback on theprogram
Documented score at thebeginning, mid and end of
the program
The parents will filthe form hone
without embarrassmor under pressure by
program coordinator
Activities:1.1.1 Collecting
updated prevalenceand demographic data
of autistic children inSingapore regularly
Inputs:Manpower, stationary,
computer for database,transportation
Through data from the
Institute of Mental Health,2 Child Development
Units and the VWOs
Permitted access to
database of IMH CDUs
Parents are aware their childs diso
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once every 4 months before the child i
years old
1.1.2
Sending invitations orcalling in to the
parents of newlydiagnosed autistic
children to ask forprogram enrolment
once every 4 months
Manpower, transportation,stationary, computer
Number of invitations sentout, emailed / calls made
Parents are willingrespond and enrol in
program
1.1.3
Organize seminarsabout the causes of
autism one every 4months
Autism experts such aspsychologist,developmental
paediatrician, therapist
Venue, audio equipment
Leaflets, booklets
Manpower
Refreshment
Meeting minutes or report
Training attendance form
Availability presenter budget/funding
Parents are wilto participate seminar
Availability
seminar venue
1.1.4
Counselling theparents in private if
they are still in doubtor they have not
resolved on monthlybasis or upon request
Counsellor, venue, stationary Counsellors report The parproactively seek h
Counsellors available
1.2.1Small group of 5-10
parents discussion onautistic behaviours &
their childsbehaviours monitored
by professional permonth
Reading materials on
recognition of autisticbehaviours and check list
Moderator, venue,stationary
Moderators note
Number of participantrecorded sheet
Number of discussionsessions
Parents are wilto participate
discussion
The availabilitycounsellors
1.3.1Small group of 5-10
parents discussion ontheir family
interactions monthly
Moderator, venue, stationary Moderators report
Number if participantrecorded sheet
The parents feedbacks
Parents are wilto participate
discussion
The availabilitycounsellors
1.3.2Small group of 5-10
parents discussion onrecommended daily
routines and dietregime once every 2
months
Autism counsellor
Nutritionist
Stationary, venue
Daily routine charted
Recommended dietcompleted
Stationary, venue
Number of participantrecorded sheet
Parents are wil
to participate discussion
The availabilitycounsellors
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2.1.1
Write contract andcontact supporting
services by the WVOsand 2 Child
Development Units(CDUs) in KK
Womens andChildrens Hospitaland National
University Hospital
Manpower
Stationary, library access
Contract write-upcompleted
Appointment with thesupporting facilities
confirmed
The committee charge
supporting facilagree to meet
2.1.2Presentation and sign
contract of partnershipwith the supporting
services by the WVOsand 2 Child
Development Units
(CDUs)
Manpower
Stationary
Transportation
Contract signed Other suppor
facilities agree partnership
2.1.3
Briefing about theavailability of
supporting servicefacility to parents once
every 2 months
Venue, presenters fromrespective organization
Stationary
Record of participation
Number of seminars held
Parents are wilto participate
discussion
2.1.4
Visiting trips to thesefacilities once a month
on Saturday morning
Facilitators
Transportation
Transportation record ofthe support facilities
visitFacilities guest log book
Long tpartnership with
facility operaestablished
3.1.1
Preparation oforientation program
booklet and parentsmanual to intervention
methods
Manpower
Stationary
400 booklets and 400parents manual printed
The number newly diagno
cases is about 2per annum
3.1.2
Preliminary
orientation program tointroduce to availablehome-oriented
intervention methodsand expected roles of
the parents once every2 months
Facilitators
Venue, stationary Booklets
Number of orientation
programs heldRecord of participation
Completed attendance
forms
Reports from facilitators
Parents are wil
to participate discussion
The availabilityfacilitators
3.1.3
Comprehensive Instructors (psychiatrists, Record of participation Parents are wil
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instruction of selected
method for smallgroup of parents (3-6
participants) inlanguage, mortor &
cognitivedevelopmental tools to
conduct home-basedlearning stimulationonce every 2 months
psychomotor therapist,
speech therapist)
Venue, stationary
Teaching equipment: audiosystem for demonstration
Parents manual of themethods
Completed feedbackforms
Reports from instructors
to participate
discussion
The availabilityinstructors
The parents are to understand methods
3.1.3
Assessment of parentsdemonstration of
selected method whenthe parents are ready
Grading of the parentsperformance by instructors(psychiatrists, psychomotor
therapist, speech therapist)or other participating
parents
Venue, stationary
Camcorder
Evaluation report ofobservers on theperformance of the
parents participation
Videotapes of assessmentsessions
The parents willing to
observed/taped wapplying learn
stimulation metinto interaction w
their autistic child
4.1.1Counselling the
parents on financialconcerns associated
with raising an autisticchild once every 2
months or based onrequest
Venue, stationary
Counsellors
Counsellors report Counsellors
available
4.1.2
Counselling theparents of legal rights,especially education,
medical support andfuture employment
opportunities onceevery 2 months or
based on request
Venue, stationary
CounsellorsCounsellors report Counsellors
available
4.1.3
Organize regular self-help parents
roundtable discussiononce every 4 months
Venue, stationary
Facilitators
Facilitators report Facilitators available
*: Diggle et al 2009: Lloy & Abidin 1985
: (Hk 1992)
: Including management of problematic behaviours such as tantrum, non-compliant, bedtime problems; and
anxiety or phobias.
5. An implementation plan with the implement schedule
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Table 3: Gannt chart
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