The Explorative Study : The Special Need of Children and Young Adult Living With Disability in Yogyakarta Special Province

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The Explorative Study The Special Need of
Children and Young Adult Living With Disability
in Yogyakarta Special Province

• By Risnawati Utami
• Nur Alvira Pasca Wati
• UCP WHEELS FOR HUMANITY INDONESIA

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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

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Background of the study

• 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

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Objectives of The Study

• 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

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OUTCOMES OF THE STUDY

• 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

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research Study Method

• 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

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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 parents group
• The research process
• - Preparation
• - Pre test questionnaire
• Pre test evaluation
• Data collection in the field
• Data analysis

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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

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Continued Qualitative Analysis

• Social-economic of respondents and their parents
  are very low
• Mostly they dont 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 couldnt 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

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Number of Respondent per Municipality
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Family Characteristics
Kulonprogo 68,1 Family member 4-6 75,4
Income Rp lt500.000 60,9 Occupation labor 40,6
Education High School
Bantul 66 Family member 4-6 82 Income Rp
lt500.000 62 Occupation labor 34 Education
Elementary School
Gunung Kidul 79,2 Family member 4-6 56,6
Income Rp lt500.000 34 and 18,9 Occupation
labor and temporary worker 47,2 Education
Elementary School
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Continued
Yogyakarta 60 Family member 4-6 52 Income Rp
lt500.000 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
lt500.000 44,4 occupation entrepreneurs and
labor 44,4 education junior and high school
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HEAlth Data

• The closest healthcare provider

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First treatment when people get sick
Municipality Percentage
Yogyakarta 80,0 (buying the drug in the drug store/small store)
Sleman 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)
Bantul 52,0 (buying the drug in the drug store/small store)
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Health Counseling Status
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The family members who have children and young
adult with disability
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Characteristics of respondent
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Educational Status
K U L O N P R O G O
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Facility in School
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Bantul
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Yogyakarta
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(No Transcript)
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continued
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Gunung Kidul
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Name of Municipality Medical Check of Respondent Medical Check of Respondent Medical Check of Respondent Medical Check of Respondent
Name of Municipality Time Cost Distance Transportation
Yogyakarta 68,0 only if they have health problem 34,8 gratis/at no cost 52,2 lt 2 Km 30,4 walking/carying and taking motor cycle
Bantul 60 only if they have health problem 60 Rplt 500.000 40 gt 2 Km 56,0 motor cycle
Gunung Kidul 37,7 only if they have health problem 35,8 Rplt 500.000 37,7 gt 5 Km 20,8 renting car
Sleman 57,4 only if they have health problem 55,0 Rplt 500.000 475 lt 2 Km 51,2 motor cycle
Kulonprogo 72,5 only if they have health problem 53,6lt Rp 500.000 37,7 gt 2 Km 39,1 bus
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The Type of disability and how to get the
assistive devices
Yogyakarta 92,0 Cerebral Palsy 52,0 no assistive devices at all 59 wheelchair, 25 of respondents with their family support purchasing the wheelchair
Bantul 92,0 CP 52,0 of respondents have the assistive devices 84,6? need wheelchair and 64,0 of the respondents are having the wheelchair for NGOs donation
Gunung Kidul 83,0 CP 71,7 no assistive devices 86,7? need wheelchair and 33,3 of the respondents are having the wheelchair for NGOs donation
Sleman 81,5 CP 55,6 no assistive devices 93,3? need wheelchair and 53,3 of the respondents are having the wheelchair for NGOs donation
Kulonprogo 92,8 CP 65,2 no assistive devices 26,1? need wheelchair and 55,6 of the respondents are having the wheelchair for NGOs donation
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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/gt 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

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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

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Nutrition
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Continued
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Personal Hygiene and sanitation
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Bantul
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Gunung Kidul
Water pipe that is flowing to the house 37,7
Toilet with their own septic tank 90,6
Squat Toilet 94,3
Private shower room 98,1
Need assistant for ADL The parents are the most assistant 83,1 92,7
Frequency of taking a shower 2 time per day 81,1
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Yogyakarta
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Conclusion

• The result of study has proved that the major
  problems of children and young adult with
  disability are
• The children and young adult are in low social
  and economic level
• The major cause of disability ? reproductive
  health of the mother and children get sick at age
  0-5 years old
• Never go to school
• No assistive device, so that in ADL/Activity
  Daily Living need assistant
• The difficulty of geographical condition ?
  Healthcare services and access to education
  Gunung Kidul and Kulonprogo
• Lack of nutrition? children with CP mostly have
  serious health problem
• Health and social security are not appropriate
  with the needs of children with CP
• Never done medical check and proper therapy
  (Physical therapy)
• Home and public facilities do not support the
  needs of children with CP

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Chart Conclusion

• See the file conclusion and recommendation

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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, parents 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 parents Group and disability
  rights to mainstream disability rights in the
  inclusive government development programs