Download - Anak Berkebutuhan Khusus Dr. Yudha
Anak Berkebutuhan Khusus(Children with special needs)
S. Yudha Patria
Prof. dr. Sunartini, PhD, SpAK
PERLINDUNGAN ANAK
UUD 1945 & Konvensi PBB
Hak anak : HAM yang harus dilindungi
UU NO. 23/2002 Perlindungan Anak Indonesia :
2
UU NO. 23/2002 Perlindungan Anak Indonesia :Anak : seseorang yang belum berusia 18 tahun
Anak : amanah sekaligus karunia Tuhan Y M E, yg harus
dijaga, karena dalam dirinya melekat harkat,
martabat dan hak-hak sebagai manusia yang
harus dijunjung tinggi.
Perlindungan Anak (2): …..
Segala kegiatan untuk menjamin dan
melindungi anak-anak dan hak-haknya
agar dapat hidup, tumbuh, kembang dan
berpartisipasi secara optimal sesuai
3
berpartisipasi secara optimal sesuai
dengan harkat dan martabat kemanusiaan,
serta mendapat perlindungan dari
kekerasan dan diskriminasi
(UU No.23/2002, pasal 1 butir 2)
Perlindungan Anak (3) …
Di Indonesia :UU no 23/2002 tentang Perlindungan Anak
disahkan 22 Oktober 2002UU no 4/1979 tentang Kesejahteraan AnakUU no 7/1984 tentang penghapusan Segala
Bentuk Diskriminasi terhadap PerempuanUU no 3/1997 tentang Pengadilan AnakUU no 4/1997 tentang Penyandang cacat
4
UU no 4/1997 tentang Penyandang cacatUU no 20/1999 tentang Pengesahan ILO
Convention no 138 Concerning MinimumAge for Admission to Employment.
UU no 39/1999 tentang HAMUU no 1/2000 tentang pengesahan ILO Convent.
No.182 Concerning the Prohibition andImmediate Action for The Elimination ofThe Worst Forms of Child Labour
HAK ANAK
• HAK HIDUP ANAKSetiap anak berhak untuk- mendapatkan nama- mendapatkan tempat tinggal yang aman- mendapatkan pelayanan kesehatan
5
• HAK TUMBUH KEMBANG ANAKSetiap anak berhak untuk- bermain dan berekreasi- mendapatkan pendidikan dasar- mengembangkan potensinya- mendapatkan standar hidup yang layak
Anak dg kebutuhan khusus (ABK)
• anak dengan karakteristik khusus yg berbeda dg anak pada umumnya tanpa selalu menunjukan pada ketidakmampuan mental, emosi atau fisik
� anak luar biasa dan anak cacat � anak luar biasa dan anak cacat
• ABK memerlukan bentuk pelayanan pendidikan khusus yang disesuaikan dengan kemampuan dan potensinya
UU No. 4 UU No. 4 //1997 1997 ttgttg PenyandangPenyandang CacatCacat((ddiafabeliafabel, , dengandengan kebutuhankebutuhan khususkhusus))
PasalPasal (5 )(5 )
“ Setiap penyandang cacat mempunyai hak
dan kesempatan yang sama dalam segala
7
dan kesempatan yang sama dalam segala
aspek kehidupan dan penghidupan”
Jenis Anak Dengan Kebutuhan Khusus
A. Tunanetra
B. Tunarungu
C. Tunagrahita : (a.l. Down Syndrome)
- C : Tunagrahita Ringan (IQ = 50-70)
- C1 : Tunagrahita Sedang (IQ = 25-50)
- C2 : Tunagrahita Berat (IQ < 25 )
8
- C2 : Tunagrahita Berat (IQ < 25 )
D. Tunadaksa :
- D : Tunadaksa Ringan
- D1 : Tunadaksa Sedang
E. Tunalaras (Dysruptive)
F. Tunawicara
G. Tunaganda
H. HIV AIDS
Jenis Anak dengan ..... (2)Jenis Anak dengan ..... (2)
I. Gifted : Potensi Kecerdasan Istimewa (IQ>125)
J. Talented : Potensi Bakat Istimewa (Multiple
Intelligences : Language, Logico-mathematic, Visuo-
spatial, Bodily-kinesthetic, Musical, Interpersonal,
Intrapersonal, Natural, Spiritual)
K. Kesulitan Belajar (a.l. Hyperaktif, ADD/ADHD, K. Kesulitan Belajar (a.l. Hyperaktif, ADD/ADHD, Dyslexia/Baca, Dysgraphia/Tulis, Dyscalculia/Hitung, Dysphasia/Bicara, Dyspraxia/ Motorik)
L. Lambat Belajar ( IQ = 70 – 90 )
M. Autis
N. Korban Penyalahgunaan Narkoba
O. Indigo
Data penyandang cacat (Difabel, berkebutuhan khusus)
1. Berdasarkan data Susenas tahun 2003,
penyandang cacat di Indonesia 1,48 juta (0,7%
dari jumlah penduduk Indonesia)
10
2. Jumlah penyandang cacat usia sekolah (5 – 18 th)
ada 21,42 % dari seluruh penyandang cacat.
(Analisa Deskriptid PMKS 2003) (Analisa Deskriptid PMKS 2003) -- BPS dan DepsosBPS dan Depsos
Tabel 5.a. Persentase Penduduk menurut Tipe Daerah dan
Kecacatan Tahun 2003
Tipe Daerah CacatTidak Cacat
Total JumlahPenduduk
(1) (2) (3) (4)
PerkotaanPedesaanPerkotaan + Pedesaan
0,610,760,69
99,3999,2499,31
100,00 (90,3 juta)100,00 (124,0 juta)100,00 (214,3 juta)
11
Tabel 5.b. Jumlah Penyandang Cacat menurut Tipe Daerah
Tahun 1998, 2000, dan 2003 (dalam jutaan)
Tipe Daerah 1998 2000 2003
(1) (2) (3) (4)
PerkotaanPedesaanPerkotaan + Pedesaan
0,431,091,52
0,510,981,49
0,550,941,48
Sumber Data BPS- Modul Sosial Budaya, Susenas 2003
12
Kelompok Umur(Tahun)
Perkotaan PedesaanPerkotaan +Pedesaan
(1) (2) (3) (4)
0 – 45 – 10
2,788,56
3,028,25
2,938,36
Persentase Penyandang Cacat menurut Kelompok Umur
dan Tipe Daerah, Tahun 2003
13
11 – 1819 – 3031- 5960 +
12,0423,7730,7122,14
13,6617,8933,5023,67
13,0620,0632,4723,10
Total 100,00 100,00 100,00
Sumber Data BPS- Modul Sosial Budaya, Susenas 2003
Jenis CacatTipe Daerah
Perkotaan PedesaanPerkotaan +Pedesaan
(1) (2) (3) (4)
Mata/buta (A)Rungu/tuli (B)
11,036,85
14,497,42
13,217,21
Persentase Penyandang Cacat menurut Jenis
Cacat dan Tipe Daerah, Tahun 2003
14
Rungu/tuli (B)Wicara/bisu (F)Wicara dan rungu (F-B)Tubuh/fisik (D)Mental (C)JiwaGanda (G)
6,856,885,43
35,5619,558,855,85
7,428,664,07
35,0613,8910,885,52
7,218,004,5735,2515,9910,135,64
Jumlah 100,00 100,00 100,00
Sumber Data BPS- Modul Sosial Budaya, Susenas 2003
Jenis Cacat
Penyebab Kecacatan
Bawaan sejak lahir
Kecelakaan/Bencana Alam/
KerusuhanPenyakit Total
(1) (2) (3) (4) (5)
Mata/buta (A) 33,98 15,99 50,03 100,00
Persentase Penyandang Cacat menurut Jenis Cacat
dan Penyebab Kecacatan, Tahun 2003
15
Mata/buta (A)Rungu/tuli (B)Wicara/bisu (F)Wicara dan rungu (F-B)Tubuh/fisik (D)Mental (C)JiwaGanda (G)
33,9811,3480,8871,2137,7866,4624,1857,47
15,997,925,637,3825,711,2423,8616,13
50,0380,7414,2921,4136,5222,3051,9626,40
100,00100,00100,00100,00100,00100,00100,00100,00
Jumlah 44,60 17,66 37,74 100,00
Sumber Data BPS- Modul Sosial Budaya, Susenas 2003
Children with special health needs -
A United States perspective
• Children with special health needs encompasses a
diverse group of problems, including severe chronic
illness, developmental disabilities, environment risks illness, developmental disabilities, environment risks
(eg child, sexual or substance abuse)
• The effect of poverty on health low birth weight, and
the influence of major times of transition such as
adolescents
• Three aspect of children with special needs :
1.Health care
2.Special and inclusive education
3.Social welfare
• Children with special health care needs are those • Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally
• In particular, three approaches have been commonly
used. Condition lists have been used for many years
to define populations of children with chronic
illnesses
• Functional status assessments are used to identify
children whose chronic conditions cause
impairments in basic functions, such as hearing or impairments in basic functions, such as hearing or
seeing, or impairments in higher level functioning
required to conduct activities of daily living, such as
eating, bathing, and dressing
• Limitation in socially defined roles, such as school
or play, due to chronic conditions has been used
for more than 40 years to identify children with
disabilities.
• Functional impairments, and disability have been • Functional impairments, and disability have been
used to identify target populations for public
programs serving children with chronic
conditions
Prevalence and Correlates of Unmet Needs
• CSHCN are currently defined by the Maternal and Child Health Bureau as “[children] who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally
• As many as 12.8% (9.4 million) of children in the United States under 18 years of age have a special health care need
• Most CSHCN do exhibit some form of physical, developmental, behavioral, or emotional disability, with most of them (at least) experiencing a chronic physical condition
EARLY DETECTION OF CHILDREN WITH SPECIAL NEEDS
Early detection of children with special needs can be
done with a lot of methods depend on the purpose :
• Simple and easy• Simple and easy
• Simple , expensive
• Simple high technology
• Complex , secure , safe, confidential
Who are the actors for early detection?
Cadre
Ibu PKK
Specialis
Health
personels
Specialist
Clinical Picture
of Congenital Hypothyroidism
Neonatal Period
Poor sucking
Macroglossy
Abdominal Distended
Umbilical hernia
Dry skin
Constipation
23
Constipation
Weakness
Puffy face
Short Stature
Mixedema
Mental retardation
CRETINISM
Too Late !!!
24
System of Care
• Families and providers work together as partners at all levels of decision making
• Children have access to ongoing comprehensive health care through a medical home
• Children and families have adequate sources of financing for the services that they require
• Children are screened early and continuously for special • Children are screened early and continuously for special health care needs and receive the early intervention services that they require
• Community services are organized so that families can use them easily
• Youths receive the services and support necessary to transition to adult health care, work, and to transition to adult health care, work, and independence
Difficulty Getting Needed Referrals for Specialty Care
• Overall, 78.1% of CSHCN were reported as having no difficulty getting needed referrals for specialty care
• Difficulty increased by poverty status, race/ethnicity, and degree of adverse impact on the child’s activity level
• 66.7% of poor children had no difficulty receiving needed • 66.7% of poor children had no difficulty receiving needed referrals, as opposed to 81.8% of nonpoor children
• 68.9% of Hispanic children, 76.2% of non-Hispanic black children, and 74.6% of non-Hispanic children of other racial and ethnic backgrounds were reported as having no difficulty getting needed referrals, as opposed to 80.1% of non-Hispanic white children
Who are the responsible institutions for the Care
of children with Special Needs in Indonesia ?
• The Ministry of Social Wellfare, Ministry of National
Education and Ministry of Health
• Indonesian National Board of Social Wellfare
(DNIKS)(DNIKS)
• Coordinator of Social wellware in Provinces and
District areas (BK3S)
• School and Institute for the Wellfare of Children with
special Needs
• Family and Community
HABILITASI dan REHABILITASI
HABILITASI :UPAYA AGAR TUMBUH KEMBANG ANAK OPTIMALSESUAI KEMAMPUAN / KONDISI ANAK
28
• Asah, Asih, Asuh• Stimulasi, Makanan Bergizi,
• Lingkungan yang sehat, risiko yang dikenali ,
• Imunisasi dan upaya pencegahan yang lain,
termasuk
- Pencegahan terhadap cedera dan perlakuan
salah serta penelantaran anak
REHABILITASI :
• UPAYA PEMULIHAN , KOREKSI, PENAMBAHAN DAN PENGEMBALIAN KE FUNGSI TANG SEHARUSNYA
• UPAYA MENGOPTIMALKAN TUMBUH KEMBANG SESUAI KONDISI & KEMAMPUAN ANAK
29
Special needs education
• “Special needs education cannot advance in
isolation. It must be part of an overall educational
strategy and, indeed, of new social and economic
policies. This requires a review of the policy and
practice in every sub-sector within education, from
preschool to universities, to ensure that thepreschool to universities, to ensure that the
curricula, activities and programmes are, to the
maximum extent possible, fully accessible to all.”
•• - Federico Mayor, Director General, UNESCO (1994)
Public Policy Support for
Inclusive Education
UNESCO Salamanca Statement andFramework for Action (1994)
… “the fundamental principle of… “the fundamental principle ofinclusive school is that all childrenshould learn together, whereverpossible, regardless of any difficultiesor differences they may have.”
4. 4. -- UU No. 4 UU No. 4 //1997 1997 ttgttg PenyandangPenyandang CacatCacat( Diafabel, dengan kebutuhan khusus)
PasalPasal (5 )(5 )
“ “ SetiapSetiap penyandangpenyandang cacatcacat mempunyaimempunyai hakhak
dandan kesempatankesempatan yang yang samasama dalamdalam segalasegala
32
dandan kesempatankesempatan yang yang samasama dalamdalam segalasegala
aspekaspek kehidupankehidupan dandan penghidupanpenghidupan””
Pasal 51
Anak yang menyandang cacat fisik dan/atau mental diberikan kesempatan yang sama dan aksesibilitas untuk memperoleh pendidikan biasa dan pendidikan luar biasa.
Pasal 52
Anak yang memiliki keunggulan diberikan kesempatan dan
aksesibilitas untuk memperoleh pendidikan khusus.
Pasal 53
1. Pemerintah bertanggung jawab untuk memberikan biaya
33
1. Pemerintah bertanggung jawab untuk memberikan biaya
pendidikan dan/atau bantuan cuma-cuma atau pelayanan khusus bagi anak dari keluarga kurang mampu, anak
terlantar, dan anak yang bertempat tinggal di daerah
terpencil.
2. Pertanggungjawaban pemerintah sebagaimana dimaksud dalam ayat (1) termasuk pula mendorong masyarakat untuk
berperan aktif.
Deklarasi Bandung (Nasional)
“ Indonesia Menuju Pendidikan Inklusif ”
8-14 Agustus 2004
a.a. MenjaminMenjamin setiapsetiap anakanak berkelainanberkelainan dandan anakanak
berkebutuhanberkebutuhan khususkhusus lainnyalainnya mendapatkanmendapatkan
kesempatankesempatan aksesakses dalamdalam segalasegala aspekaspek kehidupankehidupan, ,
34
kesempatankesempatan aksesakses dalamdalam segalasegala aspekaspek kehidupankehidupan, ,
baikbaik dalamdalam bidangbidang pendidikanpendidikan, , kesehatankesehatan, , sosialsosial, ,
kesejahteraankesejahteraan, , keamanankeamanan, , maupunmaupun bidangbidang lainnyalainnya, ,
sehinggasehingga menjadimenjadi generasigenerasi peneruspenerus yang yang handalhandal..
Deklarasi Bandung (2) ….
bb.. MenjaminMenjamin setiapsetiap anakanak berkelainanberkelainan dandan anakanak
berkebutuhanberkebutuhan khususkhusus lainnyalainnya sebagaisebagai individuindividu yang yang
bermartabatbermartabat, , untukuntuk mendapatkanmendapatkan perlakuanperlakuan yang yang
manusiawimanusiawi, , pendidikanpendidikan yang yang bermutubermutu dandan sesuaisesuai
35
manusiawimanusiawi, , pendidikanpendidikan yang yang bermutubermutu dandan sesuaisesuai
dengandengan potensipotensi dandan kebutuhankebutuhan masyarakatmasyarakat, , tanpatanpa
perlakuanperlakuan diskriminatifdiskriminatif yang yang merugikanmerugikan eksistensieksistensi
kehidupannyakehidupannya baikbaik secarasecara fisikfisik, , psikologispsikologis, , ekonomisekonomis, ,
sosiologissosiologis, , hukumhukum, , politispolitis maupunmaupun kulturalkultural
c.c. Menyelenggarakan dan mengembangkan pengelolaan Menyelenggarakan dan mengembangkan pengelolaan
pendidikan inklusifpendidikan inklusif yang ditunjang yang ditunjang kerja sama yang sinergis kerja sama yang sinergis
dan produktifdan produktif antara pemerintah, institusi pendidikan, antara pemerintah, institusi pendidikan,
institusi terkait, dunia usaha dan industri, orang tua serta institusi terkait, dunia usaha dan industri, orang tua serta
masyarakat.masyarakat.
dd. Menciptakan lingkungan yang mendukung. Menciptakan lingkungan yang mendukung bagi anak bagi anak
berkelainan dan anak berkebutuhan khusus lainnya, sehingga berkelainan dan anak berkebutuhan khusus lainnya, sehingga
Deklarasi Bandung …(3)
36
berkelainan dan anak berkebutuhan khusus lainnya, sehingga berkelainan dan anak berkebutuhan khusus lainnya, sehingga
memungkinkan mereka dapat mengembangkan keunikan memungkinkan mereka dapat mengembangkan keunikan
potensinya secara optimal.potensinya secara optimal.
e.e. Menjamin Menjamin kebebasankebebasan anak berkelainan dan anak anak berkelainan dan anak
berkebutuhan khusus lainnya untuk berkebutuhan khusus lainnya untuk berinteraksiberinteraksi baik secara baik secara
reaktif maupun proaktif dengan siapapun, kapanpun dan reaktif maupun proaktif dengan siapapun, kapanpun dan
dilingkungan manapun, dengan meminimalkan hambatan.dilingkungan manapun, dengan meminimalkan hambatan.
Deklarasi Bandung (4)
f.f. Mempromosikan dan mensosialisasikanMempromosikan dan mensosialisasikan layanan layanan
pendidikan inklusif melalui media masa, forum ilmiah, pendidikan inklusif melalui media masa, forum ilmiah,
pendidikan dan pelatihan dan lainnya secara pendidikan dan pelatihan dan lainnya secara
berkesinambungan.berkesinambungan.
g.g. Menyusun Menyusun rencana aksirencana aksi (action plan) dan (action plan) dan
pendanaannya untuk pemenuhan pendanaannya untuk pemenuhan aksesibilitas fisik aksesibilitas fisik
37
pendanaannya untuk pemenuhan pendanaannya untuk pemenuhan aksesibilitas fisik aksesibilitas fisik
dan non fisikdan non fisik, layanan pendidikan yang berkualitas, , layanan pendidikan yang berkualitas,
kesehatan, rekreasi, kesejahteraan bagi semua anak kesehatan, rekreasi, kesejahteraan bagi semua anak
berkelainan dan anak berkebutuhan khusus lainnya.berkelainan dan anak berkebutuhan khusus lainnya.
Contoh ABK
Mental Retardation / Intellectual disabilities
The definition of Mental retardation as “a
disability characterized by a significant limitation
both in intellectual functioning and in adaptive both in intellectual functioning and in adaptive
behavior as expressed in conceptual, social,
practical, and adaptive skills”. (AAMR, 2002)
Mental Retardatipn and global Developmental
delay are relative complementary
Intellectual disabilities (ID)
The prevalence of ID is 6 to 20 per 1,000
people and severe mental retardation with
an average of 3.6 per 1,000 (Sherr and an average of 3.6 per 1,000 (Sherr and
Shevell,2006).
In Indonesia around 5 million people suffer
from ID.-���� prevention of ID is very
important.
Intellectual disabilities or Mental retardation
can be classified as
a. Preventable intellectual disabilities and
b. Non preventable Intellectual Disabilities.
Cause of Intellectual Disabilities
percent
Chromosome abnormalities 4-28
Recognizable syndromes 3- 9Recognizable syndromes 3- 9
Struktural central nervous system malformation 3-17
Complications of prematurity 2-10
Perinatal conditions 8-13
Environmental / teratogenic causes 5-13
Cultural-familial mental retardation 3-12
Metabolic / endocrine causes 1- 4
Unknown 30-50
_________________________________________________
cited from Kinsbourne and Wood 2000.
The prevention programs of Intellectual
Disabilities in Indonesia :
Not all of ID can be prevented by health Not all of ID can be prevented by health technology.
Only the group of Preventable ID can be successfully prevent with many kinds of
intervention from the simple methods to very complicated Hightech
National Program for ID prevention
Primary prevention
a) Iodine deficiency control program
Iodine salt is used for daily mass program
Iodine oil is distributed to primary school students
especially in the iodine deficient areas. especially in the iodine deficient areas.
Lipiodol injection only is used for pregnant women
with low iodine intake to prevent cretin baby
b) “Wedding package” special program
special prepared for the bright before getting married
c) Indonesia Law no 23 / 2002 and no 22 / 2009
National Program for ID preventionPrimary prev (cont .....)
c) Prenatal and natal special program such as genetic counseling and advocacy of Healthy Life style, early detection and early intervention of Intellectual disabilities
d) Mother and Child Friendly Hospital especially for d) Mother and Child Friendly Hospital especially for early breast feeding initiation and exclusive breast feeding
e) Early Childhood Education Program
f) Teenagers health promotion and Improvement school Health Program
DOWN SYNDROME
Can we prevent it ?
Genetic counselling, Genetic manipulation ?
Down Syndrome is a genetic condition caused by extra genetic material (genes) from the 21st chromosome
The incidence of DS: 1 in 800 to 1 in 1,100 live births
No association DS and any culture, ethnic group,
socioeconomic status or geographic region
Clinically:Clinically:
1. Some degree of mental retardation, or cognitive disability
2. Developmental delays
3. Physical characteristic
(epicanthal folds over the eyes, flattened bridge of the nose, a single palmar
crease and decreased muscle tone)
The odds of having a child with DS:
- < 25yr about 1 in 1400
- At 35yr 1 in 350
- At 40yr 1 in 100 (Thompson, et al, 1991)
The chances of a parent of a child with Trisomy 21 having another child with DS is 1 in 100
If translocation � the recurrence risk 2% to 100%
� parents of DS with translocation type should have
chromosome analysis to detect a carrier state
The chance of a woman with Down Syndrome having a baby with Down Syndrome is theoretically 50%
What tests are used for prenatal diagnosis ?
amniocentesis and chorionic villus sampling
(CVS) at 14 and 18 weeks by karyotyping
� 55-60% confirmation
Mother’s blood: alpha-fetoprotein, triple test
� Less confirmation
What the Problem in DS ?
Health – medicine
Education
Psycho-SocialPsycho-Social
Etc