Table of Contents

I. Preliminaries

II. Home Management Program

III. International Legal Framework and Domestic Laws

IV. The Role of Developmental Pediatricians in the Management of Disability

A. Developmental Milestone of a Child

B. Understanding Down Syndrome

V. The Role of Physical Therapists in the Management of Disability - Arnold Celendro, PTRP

A. Common Gross Motor Issues of Persons with Down Syndrome and Its Management

VI. The Role of Occupational Therapists in the Management of Disability

A. Common Sensory Integration Issues of Persons with Down Syndrome and It’s Management

VII. Behaviour Management

VIII. Structured Teaching

IX. The Role of Speech and Language Pathologist in the Management of Disability

A. Common Speech, Language and Communication Issues of Persons with Down Syndrome and

It’s Management
 Day 1

At 8:00 o’clock in the morning, participants starts showing up. The NorFil Foundation organizers
welcome the participants with pleasantries. The Iloilo-based partner NGO, WWI, facilitated the
registration and distribution of event tool kit. By 8:44 am, 90% of the seats are filled and Mr. Ranilo
Sorongon has announced that training will start in 5 minutes.

Mr. Ranilo Sorongon of NorFil Foundation introduced himself and his passed engagement in
ASEAN. It is currently his 3rd year with NorFil Foundation. As the chief facilitator of the event, he
invited different groups in Iloilo city. Past and present partner organizations were invited and are
present.

Organizations present:

1. Akapin Sugbo 9. ADPI

2. CBID Cebu 10. Walk and Work Foundation Inc.
3. LCFPI 11. Kids Nook Integrated School
4. Ulikid Parents Organization Inc. 12. Child Initiative
5. Davao Jubilee Foundation 13. DepEd San Joaquin - South
6. Taw-Kabui for a Child Inc. 14. Bacolod SPED
7. St. Mary’s Academy 15. PSWDO/PDAO Antique
8. Handuman SPED Center 16. ICAN Integrated Learning Center

After GTKY (Getting To Know You), the participants and organizers went to morning snack.

At 9:10 AM, Mr. Sorongon lead the review of the programme of activities. He utilized it to
rundown and put everyone at the the same pace. To level off, he asked the participants their
workshop expectations. It follows:

- To be aggressive in handling students. Learn more patience.

- To learn behavior management on how to handle children with down syndrome.
- One participant acknowledged that the 4 days may not be enough, however, this will contribute
to their existing knowledge.
- To understand the role of speech pathologists
- As CBR worker, enhance more skills in applying knowledge as home program for children
with DS
- To refresh knowledge on home program and interventions
- To gain knowledge as trainers of parents and other co-teachers.

As the audience agreed on the cited expectation, Mr. Sorongon also put forward the need to anchor
the training on human rights perspective. Furthermore, wants to highlight the importance of the
multisectoral representation of the intensive training program.

To introduce the speaker of the next topic, Mr. Sorongon gave a brief background of Ms. Rosalyn
Marie Sorongon. Teacher My, as she prefers to be called, gave a back story why she got engaged to
teaching children with disabilities. Behavior management is not exclusive to children with
disabilities, she added. She took the challenge and how it became her vocation, together with her
husband, Mr. Ranilo Sorongon.

Listening to the participant’s expectations earlier that day, Teacher My regarded that the parents
should be informed of the importance of home management program. The parents and the rest of
the family of the children with disabilities, as caregivers, should be equipped with the techniques of
handling the children. However, since there are realities such as family stigma, poverty, lack of
understanding in inclusive education and inaccessibility of schools and centers, not all families has
home management program. It would result to cases of violence such as putting the child in a cage
or tying them at home.

Home Management Program is a program to manage a child with disability and in the community.
It’s goal is that families, CBR workers, teachers and professionals become expert implementers of
home management program. It will help the child and its family deal and cope with the condition. It
emphasis the collective effort to make it work. Effectivity of the program has been established. A
case of Rowel from Bulacan was made an example. A video documentation was presented to the
participants.

Objectives of the Home Management Program:

- Option or alternative for families with no/limited available services and/or resources
- Family is knowledgeable
- Child is independent, functional and productive
- Child is integrated with the family

Benefits of Home Management Program:

- Family is empowered
- Life is manageable
- Ket to education and employment
- Encourages participation, promotes inclusion at home and community

Issues Surrounding Home Management Program:

- Poverty is one of the reason why families of children with DS can not provide proper health
services. It is also the identified reason why there are cases that children are placed abusive
situations such as tying them at home or putting them in cage. Success stories from the ground
tells us good practices to respond to this. In India, parents has organized themselves to create
shared minding services that allows them to work.
- The lack of specialists pushes advocates and caregives to be generalist. This is detrimental in the
wholistic development of the children with DS.
- The language of Home Management Program should be comfortable for the parents, educated or
not.

Question raised after Ms. My’s lecture:

Can a child with DS be hyperactive?

 Mr. Sorongong answered, “It is possible that it is co-morbid”.

Human Rights Perspective of Disability

At 10:50 am, Mr. Sorongon started his discussion on the human rights perspective of disability. He
wrote the module after his attendance to the UN Conference in Geneva as part of his parallel report.
He started his lecture by flashing photos of children with DS, and solicited the feelings of
participants upon seeing them.

People with disabilities can be self actualized. It is only possible if their environment will allow
them to do so. The human rights lense of disability is emanates from its being a human - a man, a
women or a person which he/she entitled.

Mr. Sorongon discussed in detail what a person with disability is by asking affirmation from the
participants with their familiarity with CRPD.

Differentiation of Impairment and Disability

Impairment (kapinsalaan) is a health condition that may or may not be visible. Disability on the
other hand is an impairment and barrier.

Models/Approaches of Disability
• Charity
• Medical
• Social
• Human Rights

Activity: Mr. Sorongon presents cases and let the participants identify which model it is.

V. The Role of Developmental Paediatricians in the Management of Disability

Afternoon session started at 12:59 pm. Dr. Emee Marie Evangelista, MD, DPPS is the resource
person. She is one of two developmental paediatrician in Iloilo City. She discussed about
developmental milestones of a child, and to further understand down syndrome.

‘Developmental age is important in assessing the disorders’, Dr. Evangelista stated. The rule of
thumb in developmental milestone are as follows:

- 2 -5 years, age in year - number of words in child’s sentences

- Ages in years/4 = % of speech understood by strangers
1 year 25%
2 years 50%
3 years 75%
4 years 100%
How to recognize developmental milestones:
1. Consider the different domains of development and the age of the child when reviewing
milestones
2. Consider significant events around the time (Review development milestones booklet).

Milestones at 6 months:

• Social/Emotional - Responds to other people’s emotions and often sees happy.

• Language/Communication - Begins to say consonant sounds.
• Cognitive - Begins to pass things from one hand to the other (cognitive).
• Movement/Physical - Begins to sit without support.

Dr. Evangelista showed series of videos that highlights the developmental milestone of atypical
children. She emphasized that it is important to be wary of the warning signs of possible
development delay. However, immediate caregivers should understand that milestone checklist
should not be used to give prognosis to a child. A screening test is still the best tool.

Paediatric Screening Test

Developmental Monitoring vs. Developmental Screening - Developmental screening is done at a

specific age and has significant purpose: 9 months, 18 months and 24/30 months. Developmental
Paediatrician are trained professional on evaluating, after receiving recommendation from teachers.
Mr. Sorongon asked Dr. Evagelista why it is important to see a specialist. According to Dr.
Evagelista, medical evaluation is specially focused per individual. The prognosis will be the basis to
design a program.

As learning check, Dr. Evagelista throw in question to the group related with developmental
learning. Best way to monitor development is by tracking their developmental milestones.

Four (4) Centers in MM with Developmental Paedtritics

- PCMC
- PGH
- La Salle
- TMC

In Iloilo City, the two (2) developmental paediatrician works alternately each month at Iloilo
Western Hospital.

Three (3) Types of Down Syndrome

1. Full Trisomy 21
2. Translocation
3. Mozaic

Dr. Evagelista stressed the relatedness of the mother’s age to having a baby with down syndrome.
80% of cases of DS are conceived by mothers more than 35 years old. Women who gets pregnant
this age should have a regular prenatal.

For cases of children with DS, developmental stimulation should be conducted 0 - 3 years old. The
cases of these children should be approached in developmental age, not in chronological age.
Before, life spans of person with DS is only until ten (10) years old in 1929. Now, a person with DS
can live until sixty (60) years old.

Day 1 officially ended at 4:30 o’clock in the afternoon.

Day 2

The second day of the workshop started at 8:35 am. The participants are asked to write down their
learning in the tree of knowledge.

Feedbacks were solicited by Mr. Sorongon. According to one participant, it is important people
working directly with children with DS should be mindful. One remarkable input said, ‘ We are the
boat, the monsters are the challenges, the passengers are the children’.

According to Mr. Sorongon, he wants to encourage critical analysis in every workshop. He

expressed his gladness that this workshop is exhibiting this. Participants need to be at the same
context analysis in order to achieve the workshop objectives.

At 9:44 in the morning, Mr. Sorongon continued his discussion on PWD rights.
Important Terminologies:
• Language
• Discrimination - Discrimination on the basis of disability. Discrimination can either be direct,
indirect/secondary or associative. Direct discrimination is directly saying it to the person. Indirect
discrimination is non accommodation on the disability of the individual.

What’s in a name? Language is important. NorFil advocates persons’ first perspective. As part of
NorFil advocacy, they lobby with DepEd on making their programs inclusive. Right now, learning
resource materials are only for the blind. ADHD, intellectual impairment etc. This is also one of
things they are moving.

One participant, a principal from Antique admits that DepEd schools does not comply to building
code. It is now their battle cry.
Disability Courtesy
- Includes asking a person or a group of person the proper terminology when referring to him/her
or their group.

Physical Therapy and Down Syndrome

At 9:45 am, Mr. Arnold Celeno started his lecture on Physical Therapy and Down Syndrome.
Teacher Arnold is an experienced Physical Therapist based in Iloilo City. He owns a clinic that
service children with disabilities. His facility assist children through a series of activities, with the
use of treadmill and swimming pool.

According to Teacher Arnold, their role as PT is not to hasten the milestone. They can only
strengthen what needs to be done so he/she can use it. He also put side by side the roles of PTs and
Occupational Therapists.

Settings for Physical Therapy

- Neonatal Intensive Care Unit
- Early Intervention
- School-base
- Inpatient hospital or rehab hospital (acute care)
- Outpatient
- Wellness Groups
- Specialty Clinics
Musculoskeletal Factors

Low Muscle Tone (hypotonia)- a low level of muscle contraction during a resting state; limited
resistance to passive movement of a muscle Affects all areas of the body, including oral motor skills
and intestinal motility.

Hypotonia

• Ligamentous Laxity (Loose ligaments)

o Decreased collagen fibers
• Decreased Strength
• Delayed skeletal maturation
o Short arms and legs

Decreased Strength Legamentus Laxity

1.Cerebellum hypoplasia
o muscle hypotonia
o axial control of the trunk
o body balance o coordination
o speech disorders

2.Corpus Callosum size affect coordination

3.3. Other health concerns or illnesses

Associated Conditions that may affect mobility

• Obesity
• Hearing and vision loss
• Cardiac abnormalities
• Decreased mobility from surgery
• Seizures
• Sleep apnea
• Ear infections
• Chronic upper respiratory problems

Teacher Arnold showed the participant basic approaches. See Photos below:
 Forum after the lecture on PT and Down Syndrome

Questioner: A 40 year old patient who recently had stroke does not participate in the ROM
exercises. How do PTs of WWI engage him?

Lecturer: What is the mental age of the patient?

Q: Advance.

Lecturer: Motivate the person by understanding and working within his interest. Make it as fun as
possible. The frustration on how things work in the hospital that the approach is robotic. Make
friends with the patient.

——

Q: We are train BHW and other community worker, what is the best training for these workers?
NorFil is only at the community for a time period only. With LGU taking over, the community
worker should continue to work with these communities, they are delicate and scared to handle
children with disability.

L: What is the process?

Q: Few days training and then refer to community case.

L: This can be inferred to the confidence of the worker to perform. Do not include in training those
who are not that committed and interactive. i.e. Hydrotherapy. L will bring the BHWs to the beach.
It is seen as recreation but they are trained on location.

——
Mr. Sorongon: Are you able to undergo training how to handle cases in the community?

CBID Member: Just internship.

——

Crowd: What is the line that can be delegated between the professional and the community worker?
Ituturo and di ituro.

L: Basic exercises like ROM but not manipulation.

———

Teacher: What other activities that a child with DS can do that can not tolerate long standing?

L: What is the case of the student? What is the condition? Is there co-morbidity. Also, learn from
the parents what are the activity of the child at home. The child can be manipulative and just
perform easy task. These kids need motivation.
———

Mr. Sorongon suggested that the same question will be asked to other lecturer.

Crowd: What is the line that can be delegated between the professional and the community worker?
Ituturo and di ituro.

—————

L: How do kids develop?

Feedback on acitivity

With proper funding, we can do this at our DepEd school.

Being resourceful, creative and innovative to understand motor skills.

Strong linkage with our stakeholder, whatever materials, it can aide us.

Lecturer found out that most educators are not fit. Outside environment can make our eyes relax.

Activities does not need high tech materials. We can always improvise.

- Make it fun
- Relate it to real life. Ex. Food prep is also a life skill. Students took order (social).

Sensory Integration/Sensory processing skills

Proprioceptive System - read on regarding this

Mouthing is brought about by the sensation. Since our hands and mouth has the most sensation,
children will tend to lick or put stuff in their mouth. Some cases includes biting knuckles. Provide
hard candy or bubble gum to to translate the sensation. This is the manner that the kid is increasing/
calming its proprioceptive sensation. However, this should he consulted to the parents. The child
must be in a diet restriction.

We should not go quick to diagnose. The child of DS should be given proper approach. Providing
wrong diagnosis can be detrimental to the child's learning.

Helping the child find his balance

- Environment
- Task
- Child
- You!

3 Ps in organizing the environment

- Predictive
- Priming
- Peaceful

Lecture requested that the schools will have a resource center that the student can go to calm
themselves.

In tasks, give tasks that are goal oriented. This will utilize the energy of hyperactive students.
Incorporate changes in the task position. Like running while spelling.

Know what the child is sensitive of. Provide calming sensation. Deep pressure, heavy work
activities, slow linear movement, avoid light and unexpected touch. Avoid alerting sensation.

Points ponder throw in by the lecturer at the end of the presentation.

What am I doing to prepare with real life?

How it connects with the real life?

Occupational Therapy and Down Syndrome

The group went to lunch at 12noon and returned at exactly 1:00 pm. The afternoon session was with
Ms. Christianne Marie Andigan. She is an Occupational Therapist based in Iloilo City. Lecturer
showed a video of typically developing eight (8) months old child. Observations showed that the
child can do mouthing, can sit independently, bilateral coordination, no head lag, can reach and has
object permanence and child’s activity is in midline. She made the participants contrast it with a
child with DS. Fine motors of children with DS get stucked so it needs to be developed externally.

Lecturer showed a video of Rosie, a day in a life of a functioning DS. Rosie can perform chores at
home and follow instructions. Her independence is evident, she looks like a typical child, can adapt
easily and receives positive reinforcement. Her parents focused on her ability than her disability,
which made her capable and independent.
Activity:

At 3:00 oclock in the afternoon, lecturer introduced a series of activities that made the participants
understand postural, tactile, hand and bilateral coordination. These are the essential basis of fine
motor development.

Postural Stability - Ability to stay upright during balance challenges and arm and leg movement. It
depends on core strength.

Tactile Perception - Ability to understand sensation coming from the skin, particularly the hand. It
allows us to appreciate an object's size, weight, texture and shape.

Hand Function - Ability to use forearm, wrist and small muscle hands/finger. It is also used in
manipulation gross prehension.

Bilateral Coordination - Ability to use both hands in coordination with the other.

The afternoon workshop ended at 5:00 pm.

Day 3
Day 3 of the seminar-workshop started at 8:30 am. The participants are requested to write their
learnings to the knowledge tree. Participants also shared to the group their learnings from the
previous day’s lecturers; Mr. Ranilo Sorongon, Mr. Arnold Celendro, and Ms. Christianne Marie
Andigan.

Mr. Ranilo Sorongon continued his lecture on human rights perspective of disability and major
laws. Philippines’ law on disability was adopted by from the UN General Assembly, where the
country is a state party. This is locally implemented by the Commission on Human Rights. US, on
the other hand, never ratified it as the country deem that their local laws is sufficient already.

The UNGA provided concluding observation and recommendation:

- Prevalence of charity model and medical model
- Review laws/legis related to PWD
- Absence of comprehensive policy
- Lack of information about measure to insure inclusion and children

Representation of children with disabilities:

- Parents
- Guardians
- Organizations

Last November was the official celebration for National Children’s Month. The theme is Promotion
and Stregnthening the Rights of a Child
- Survival
- Development
- Protection
- Participation

According to NorFil, the weakest among the substantive articles of rights is Participation. In the
past, UNICEF went to Iloilo City to research on the children with disabilities.
Activity: Match law no. to the law title.

Behavior Management

The next lecturer is Ms. May Sorongon. She gave a brief professional background about herself at
the start of the lecture. To energize the group she initiated an icebreaker that test the alertness and
listening skills of the participants.

According to Teacher My, behavior becomes a challenge when it becomes a threat to people,
learning and environment.

The Iceberg Theory:

Manifestation

Other main reason:

Communication
Physiological

Sensorial

Old habit

Attention Seeking

Impaired Intellectual Function

Non-functional skills

Socially Adept
Behavior modification is a process of changing behavior to behavioral goals and task analysis
through reinforcement. It needs to be done inorder to function in their environment. It wishes to let
the child with DS work harmoniously with other people. Task analysis is a step by step procedure in
coming up with a task.

New Direction: Motivation

Real Strengths:
- Social Development
- Learning with Social Support
- Word Reading

In observing the child with DS, do not get fixated on difficulties but on strength instead.

Steps for Analyzing Behavior

1. Identify Challenging Behavior

2. Prioritization Behavior

3. Analyze Reasons

4. Plan for Success

Plan for Success

Use appropriate reinforcements in planning for success. Know what are the interests of the child.
Use different rewards, best if motivating. It is noteworthy to mention that the parents should be in a
support group.

Token System

This approach works best for higher cognitive cases. The reward in itself is another tangible reward.
Ms. My shared a story about the School of Tomorrow. The school has a store facility that the
students can buy from using the points they get from classroom activities.

What is Behavior Analysis?

Behavior analysis is used to change the wrong language the child was taught. The instructor will
provide options to cut the child’s frustrations.

TEACCH 5 Basic Principles

1. Physiological Structures – individuals’’ immediate surrounding’s; defined by physical
boundaries

2. Consistent Schedule

3. Work System – establishes expectations and independence

4. Routine – supports consistency

 5. Visual Structures - cues for reminder and instruction

Observation Chart

Ms. My recommended the use of observation chart. It is used in taking notes significant observation
to identify behavior pattern that will be reinforced.

PREST

This is a common pre screening tool for a child with impairment. Early diagnosis is highly
encouraged by experts inorder to provide early intervention.

Da 3 ended at 4:00 pm. NorFil team later met with partner organizations.

Day 4

The 4th day of seminar – workshop started as early as 8:10 am. Participants shared their learnings:

- Studying related laws is engaging using Mr. Sorongon’s approach.

- Approaches in behavior modification will be helpful to the practitioners.

- The behavior management chart will be adopted by one of the institution present in the
workshop.
- PDAO offices are always controversial.
At 8:37 o’clock in the morning, Ms. Kathy Reyes started her lecture. She is a Speech and Language
Pathologist. According to Ms. Reyes, speech and language is very person specific. The issues and
personalities is unique per individual, thus, approaches should be customized as well.

Who are speech pathologists?

- Screen

- Assess/Diagnose

- Intervention
- Train Families

Cognition is the preliminary process. It should come before speech training. According to Ms.
Kathy, the patient should be able to visually identify first. Children with DS will, at some point,
develop depression when they realized that they are not like others.

What comprises a person?

Person Task

Environment

Speech is either delay or non exposure.

Language learning or language acquisition.

The kids need to learn through trial and error, like in play.

Value Communication than Speaking

 Listening Speaking

Writing Reading

According to Ms. Kathy, there circumstances during speech training that a child can not imitate
sounds because of hearing loss. The difficulty in hearing leads to inability to receive and retain
sounds.

How do children learn by themselves:

- Play
- Social interaction with peers
- Observation of environment

A child who is an atypical learner would:


• Understand communication process differently

• Learning would depend on the opportunities we give at home
• Experiential in nature
• Meaningful for the child

Just like the first three (3) lecturers, Ms. Reyes has encourage early detection inorder to put the
child into a program as early as possible.
The afternoon session of the last day of lecture was to create home management program. Cebu
team has presented their ready-made program that is being implemented now.

Due to the lack of time to create home management program per team, Mr. Sorongon has encourage
other participants to just create them on their own. Inspired by examples presented to them by Cebu
team and learnings from specialists from the last four (4) days of training, participants agreed to
take home the said task.