Transcript The Feasibility Study of The Special Need of Childreen and

By: Risnawati Utami
Nur Alvira Pasca Wati
UCP WHEELS FOR HUMANITY INDONESIA
Outline Presentation
Back ground of the Study
 Objectives of the Study
 Outcome of the Study
 Research Study Method
 Findings from the Qualitative Analysis
 Findings from the Quantitative Analysis
 Conclusions and Recommendations

High
population of people with disabilities in Indonesia and there
is no clear data of the exact number of children living with
disabilities in Indonesia
High number of reproductive health problem among the young
mother who are those getting pregnant and giving birth
Lack of access to healthcare and education among the children
and young adult with disabilities
 Lack of disability awareness in the community and stake holders
Lack of mainstreaming disability in development specifically in the
government programs in all levels
 Lack of laws and policies enforcement concerning the rights of
persons with disabilities in Indonesia
Promoting and supporting the realization of the government
programs and private sectors to advocate the rights of children and
young adult with disabilities specifically to get proper mobility access,
healthcare and education
 Developing effective programs and the sustainability to advocate
the rights of children and young adult with disabilities
 Developing programs and shared efforts with other organization to
avoid the duplicate programs
 Developing proper program actions to ensure the needs of
children and young adult with disabilities to get better access to
mobility, healthcare and education in the government/public sector
and in the private sector

To create ideas and innovative programs to ensure the needs of
children and young adult with disabilities in order to compliment the
the Existing Social Protection Programs di Indonesia.
 To ensure the effective policies on social, health and education
that have disability perspective
 To create synergy and program collaboration with the other
organization, government institution and private sector to get the
proper solution concerning disability issues Indonesia


Research method : exploratory research

Time : January – May 2009

Project sites: 4 municipality and 1 town

Population and sample:
Children and young adult with disabilities age 6-25 years old
55 respondents are for the Qualitative analysis and 252 respondents are for the
Quantitative analysis

This research study is primarily focus on the qualitative research and it has been
backed up with the quantitative data in order to describe the detail respondents
characteristic in each municipality


Technical data collection : random sampling

Research Variable Identification:
Family health data
Characteristics children and young adult with disabilities
Medical check up data
Health and social security
Nutrition
Assistive devices
School
Sanitation and hygiene
Continued: Research Method Study
Data collection method:
 Quantitative Data : In-depth Interview and Focus Group Discussion
 Qualitative Data : Structured questionnaire
 Data source : primary and secondary data (Ministry of Social, Special
School, Hospitals)
 Data analysis : Quantitative data is using univariate analysis meaning
that the data describes every research variable based on the
characteristic of location, people/population, and time
Qualitative data is based on the analysis of the In-depth Interview and
Focus Group Discussion of the parent’s group
 The research process:
- Preparation
- Pre test questionnaire
- Pre test evaluation
- Data collection in the field
- Data analysis

Qualitative Analysis

Stigma and prejudice :
 Disability is assumed as a disease that could be cured
 Disability is still assumed as the bad thing in the family
(superstitious)

The cause of disability :
 Reproductive health problem is the primary factor of
the cause of disability specifically in the period of
pregnancy and giving the birth (i.e the young mothers
rarely check their pregnancy through USG because
the un-affordable cost and the distance, premature
and vacuum/suction)
 Children get sick (usually high fever) in the age
between 0 - 5 years old

The highest type of disability is Cerebral Palsy
Continued : Qualitative Analysis





Social-economic of respondents and their parents are very low :
 Mostly they don’t have assistive devices i.e wheelchair
 Lack of access to information to get the proper wheelchair
 Children and young adult with CP need care taker or assistant who could support
them to their ADL (Activity Daily Living)
Most children are having the serious condition that make them could not go to school
and if they could go to school, they couldn’t access it
Personal Hygiene:
 The digestion system is not working well – it will cause the bowel movement daily
 Seating and positioning of children and young adult with CP are mostly not correct
-it will cause the posture of the children (i.e Scoliosis)
Lack of nutrition – it will cause children and young adult with CP have high risk in health
and the development process
Life expectancy is very low :
 Inadequate health and social security specifically for children and young adult with
CP
 Difficulty to access the clinic therapy /primary health care that provides physical
therapy and related healthcare
 Lack of access to information specifically for accessing the proper therapy
 Lack of human resources to serve children and young adult with CP
Kulonprogo
27%
Gunung
Kidul
21%
Yogyakarta
10%
Bantul
20%
Sleman
22%
Family Characteristics
Kulonprogo
68,1% Family member: 4-6
75,4% Income: Rp <500.000
60,9% Occupation: labor
40,6% Education: High School
Bantul
66% Family member: 4-6
82% Income: Rp <500.000
62% Occupation: labor
34% Education: Elementary School
Gunung Kidul
79,2% Family member: 4-6
56,6% Income: Rp <500.000
34% and 18,9% Occupation: labor and temporary worker
47,2% Education: Elementary School
Continued
Yogyakarta
60% Family member: 4-6
52% Income: Rp <500.000
32% and 24% occupation: entrepreneurs and labor
28% and 24% education: junior and high school
Sleman
68,5% Family member: 4-6
75,9% Income: Rp <500.000
44,4% occupation: entrepreneurs and labor
44,4% education: junior and high school
The closest healthcare provider
• Yogyakarta (Puskesmas/Primary healthcare in the district
level)
40,0%
46,3%
34,0%
31,9%
76,0%
• Sleman (Puskesmas)
• Gunung Kidul (Puskesmas)
• Kulonprogo (Midwife)
• Bantul (Puskesmas)
Municipality
Yogyakarta
Sleman
Percentage
80,0% (buying the drug in the drug
store/small store)
46,3% (medical check to the
healthcare providers)
Gunung Kidul
60,4% (medical check to the
healthcare providers)
Kulonprogo
47,8% (buying the drug in the drug
store/small store)
52,0% (buying the drug in the drug
store/small store)
Bantul
Health Counseling Status
Yogyakarta  a. No : 50%
b. Yes : 50%  Primary healthcare staff in the district 61,1%
Bantul  a. No : 72,0%
b. Yes : 28,0%  Kader Posyandu 28,6%
Sleman  a. No : 50%
b. Yes : 50%  Kader Posyandu 48,1%
Kulonprogo  a. No : 50,7%
b. Yes : 49,3%  Primary healthcare staff in the district
50,0%
Gunung Kidul  a. No : 28,3%
b. Yes : 71,7%  Kader Posyandu 63,2%
The family members who have children
and young adult with disability
Kulonprogo
1 person: 96,1%
2 persons: 3,03%
Gunung Kidul
1 person: 94%
2 persons: 6%
Yogyakarta
1 person: 100%
Sleman
1 person: 96,1%
2 person: 1,1%
3 person: 1,1%
Bantul
1 person: 100%
Kulonprogo
• Age : 7-12 years old 56,5%
• Gender: a. M: 49,3%
b. F: 50,7%
Bantul
• Age : 7-12 years old 58%
• Gender:
a. M: 70%
b. F: 28,0%
Bantul
Gunung
Kidul
• Age: 7-12 years old 45,3%
• Gender:
a. M: 56,6%
b. F: 43,4%
Sleman
• Age: 7-12 years old 42,6%
• Gender:
a. M: 59,3%
b. F: 40,7%
Yogyakarta
• Age: 7-12 years old 48,0%
• Gendder :
a. M: 68,0%
b. F: 32,0%
Educational Status
K
U
L
O
N
P
R
O
G
O
19,6% No
asistant to go
to school
76,9% Special
school
• No 81,2%
• Yes 15,9%
• Free or at no cost
76,9%
• Distance >1 Km
53,8%
100% Respondents
• 53,8% are
are accompanied by
accompanied to go to
parents 38,5%
school
(motorcycle)
Facility in School
100% lavatory is in
the first floor  84,6%
(asistant)
61,5% type of
toilet is squat
toilet and
western toilet
100% class
room  in the
first floor
School
Facilities
Bantul
• 38,6%
school fee is
free/gratis
• 71,4% of the
school distance
>1 Km
28,0%
student
38,9%
• 85,7%
accompanied by
the parents
going to
school is
not
important
72,0%
not going
to school
78,6%
special
school
•
64,3% has to
be
accompanied to
go to school
84% student and 16% respondents don’t go to school because
50% the physical condition of the children could not go to school
80% special school, 100% at
80% of the school distance>1 Km
no cost for going to school
85% of the respondents are dependent on their parents to go to school, but
44,0% of them are not accompanied by their parents in school
90,5% class room in the first
floor
90,5% of the lavatory is in the
first floor
52,4% of the children have to be delivered to go to school by their parent
71,4% of schools provide the modern toilet and squat toilet
53,8% go to special
school
Student 48,1%
34,6% gratis/at
no cost
Sleman
Don’t go to
school 51,9%
60,7% because the physical
condition of respondent is
not able to go to school
continued
61,5% school distance
>1Km
42,3% squad toilet
100% toilet is in the first
floor
75% parents delivered the
respondent, 40% of
respondent accompanied
by their parents/family
100% class room in the
first floor
Educational
Status
• 20,8% student
• 79,2% don’t go
to school
because 26,2%
of the physical
condition of
respondents are
not able to go to
school
School expense and
distance
• 63,6% gratis/at no
cost
• 36,4%
walking/carrying
81,8% the distance
<1Km
• 45,5% delivered by
parents, but 81,8
respondents are not
accompanied by
their parents during
study in school
School facility: class
room and toilet
• 90,9% the class
room is in the first
floor
• 100% toilet in the
first floor
• 54,5% delivered by
their parents
• 54,5% has modern
toilet and squat
Name of
Municipality
Medical Check of Respondent
Time
Cost
Distance
Transportation
Yogyakarta
68,0% only if 34,8%
52,2% < 2 30,4%
they have
walking/carying
gratis/at no Km
health
and taking
cost
motor cycle
problem
Bantul
60% only if
they have
health
problem
60% Rp<
500.000
40% > 2
Km
56,0%
motor cycle
Gunung
Kidul
37,7% only 35,8% Rp< 37,7% > 5 20,8%
if they have 500.000
Km
renting car
Sleman
57,4% only 55,0% Rp< 475% < 2 51,2%
if they have 500.000
Km
motor cycle
health
problem
92,0%
Cerebral
Palsy
Bantul
92,0% CP 52,0% of
respondents
have the
assistive
devices
83,0% CP 71,7% no
assistive
devices
84,6% need
wheelchair and 64,0% of
the respondents are
having the wheelchair for
NGO’s donation
81,5% CP 55,6% no
93,3% need
wheelchair and 53,3% of
Gunung
Kidul
Sleman
52,0% no
assistive
devices at all
59% wheelchair, 25% of
respondents with their
family support
purchasing the
wheelchair
Yogyakarta
86,7% need
wheelchair and 33,3% of
the respondents are
having the wheelchair for
NGO’s donation
Health Security
Kulonprogo
• 53,6% of respondents are having the health security
 35,1% JPKM
•89,2% type of health security is “the health card”
•89,2% Period of health security is 1x/year
Bantul
• 22,0% of respondents are having the health security 
54,5% ASKESKIN
• 72,2% type of health security is “the health card”
• 36,4% Period of health security is 1x/> 1 year
Gunung Kidul
• 47,2% of respondents are having the health security  56,0%
JAMKESMAS
• 56,0% type of health security is in cash Rp 300.000/month
• 80,5% Period of health security is 1x/1 year
Continued
Yogyakarta
•44,0% of respondents are having the health security 
38,5% JAMKESMAS
•69,2% type of health security is “the health card”
•61,5% period of health security is 1x/1 year
Sleman
•31,5% of respondents are having the social security
29,4% DINSOS (Local Ministry of Social)
•35,3% type of social security is a social card
•41,7% period of social security 1x/6 month
Nutrition
Kulonprogo
58,0% of respondents need assistant in eating
53,6% tempe/tofu, vegetables
Bantul
82,0% of respondents need assistant in eating
20% tempe/tofu and eggs
Sleman
44,4% of respondents need assistant in eating
50% tempe/tofu, vegetables
Continued
Yogyakarta
Gunung
Kidul
• 56,0% need assistant
in eating
• 20,0% tempe/tofu,
vegetables+eggs
• 67,9% need assistant
in eating
• 18,9% tempe/tofu
Toilet
73,9% squat toilet
18,8% in the river
65,2% toilet with
septic tank
76,8% private water
pond
Kulonprogo
88,4% need assistant
to take a shower,
bowel movement and
urine 83,6% by
parents
Frequency of taking
shower:
94,2% 2x/day
• 86,0% Private
shower room
• 78,0% Private
septic tank
• 82,0% squat
toilet
• 4,0% in the
river
Toilet
Shower
room
Assistant to
take shower,
clothing and
other ADL
Frequency
of taking a
shower
• 82% of respondent need
assistant 95,1% the
parents are the most
assistant
• 82,0% of respondents
are taking a shower 2
time per day
Water pipe that is flowing to the
house
Toilet with their own septic tank
37,7%
Squat Toilet
94,3%
Private shower room
98,1
90,6%
Need assistant for ADL
83,1%
The parents are the most assistant 92,7%
Frequency of taking a shower 2
81,1%
time per day
79,6% toilet with their
own septic tank
72,2% squat toilet
Sleman
68,5 of respondents
need assistant for ADL
and frequency of taking
a shower is 2 times per
day is 92,6%
90,7% private
shower room
64,0% private
water pond
68,0% toilet
with their own
septic tank
76,0% squat
toilet
60% need
assistant for
ADL and the
frequency of
taking a shower
2 times per day
is (92,0%)
Conclusion
The result of study has proved that the major problems of children and
young adult with disability are :
1. The children and young adult are in low social and economic level
2. The major cause of disability  reproductive health of the mother
and children get sick at age 0-5 years old
3. Never go to school
4. No assistive device, so that in ADL/Activity Daily Living need
assistant
5. The difficulty of geographical condition  Healthcare services and
access to education : Gunung Kidul and Kulonprogo
6. Lack of nutrition children with CP mostly have serious health
problem
7. Health and social security are not appropriate with the needs of
children with CP
8. Never done medical check and proper therapy (Physical therapy)
9. Home and public facilities do not support the needs of children with
CP
Chart Conclusion

See the file conclusion and recommendation
Recommendation
This recommendation is crucial part of the responsibility in across sectors and departments in the
government level and ideally should be done together by healthcare professional, NGO/INGO, DPO,
parent’s group, corporations and other related stake holders – to get the real solution and could
solve the social problems specifically to mainstream the disability rights in the program development
in Indonesia after the President SBY signed the Convention on the Rights on Person with Disability
on March 2008.
1. Preventive

Strengthening health policies in term of reducing the disability cases specifically Cerebral Palsy in
Indonesia :
Reproductive health policies specifically pregnancy and giving the birth
2. Curative

Strengthening the social policies after the disability cases happened
Health policies and education policies are crucial to protect and to support the rights of children and
young adult with disability in order to reduce social burden and other impacts of the disability. These
could be done through developing clinical therapy programs, counseling, and inclusive
education/Ministry of Education , providing proper health security and social security as part of the
social protection program that has been developed by the Ministry of Social and Ministry of Health
3. Rehabilitative

Providing proper assistive devices i.e wheelchair to support the mobility and independency of
children and young adult with CP as well as increasing soft skill /vocational trainings

Establishing policies across department in the government level to support accessibility and
technical steps to provide the proper assistive devices in term of assistive devices, mobility access,
inclusive education and to improve the existing health security and social security programs
4. Advocating the parent’s Group and disability rights to mainstream disability rights in the inclusive
government development programs
