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 :

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.
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Perlindungan Anak (2): ..

Segala kegiatan untuk menjamin dan melindungi anak-anak dan hak-haknya agar dapat hidup, tumbuh, kembang dan 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 2002 UU no 4/1979 tentang Kesejahteraan Anak UU no 7/1984 tentang penghapusan Segala Bentuk Diskriminasi terhadap Perempuan UU no 3/1997 tentang Pengadilan Anak UU no 4/1997 tentang Penyandang cacat UU no 20/1999 tentang Pengesahan ILO Convention no 138 Concerning Minimum Age for Admission to Employment. UU no 39/1999 tentang HAM UU no 1/2000 tentang pengesahan ILO Convent. No.182 Concerning the Prohibition and Immediate Action for The Elimination of The Worst Forms of Child Labour
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HAK ANAK
HAK HIDUP ANAK Setiap anak berhak untuk - mendapatkan nama - mendapatkan tempat tinggal yang aman - mendapatkan pelayanan kesehatan HAK TUMBUH KEMBANG ANAK Setiap anak berhak untuk - bermain dan berekreasi - mendapatkan pendidikan dasar - mengembangkan potensinya - mendapatkan standar hidup yang layak
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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 ABK memerlukan bentuk pelayanan pendidikan khusus yang disesuaikan dengan kemampuan dan potensinya

UU No. 4 /1997 ttg Penyandang Cacat

(diafabel, dengan kebutuhan khusus) iafabel, khusus)

Pasal (5 ) Setiap penyandang cacat mempunyai hak dan kesempatan yang sama dalam segala aspek kehidupan dan penghidupan

Jenis Anak Dengan Kebutuhan Khusus

A. B. C. Tunanetra Tunarungu Tunagrahita : (a.l. Down Syndrome) - C : Tunagrahita Ringan (IQ = 50-70) - C1 : Tunagrahita Sedang (IQ = 25-50) - C2 : Tunagrahita Berat (IQ < 25 ) Tunadaksa : - D : Tunadaksa Ringan - D1 : Tunadaksa Sedang Tunalaras (Dysruptive) Tunawicara Tunaganda HIV AIDS
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D.

E. F. G. H.

Jenis Anak dengan ..... (2)

I. J. Gifted : Potensi Kecerdasan Istimewa (IQ>125) Talented : Potensi Bakat Istimewa (Multiple Intelligences : Language, Logico-mathematic, Visuospatial, Bodily-kinesthetic, Musical, Interpersonal, Intrapersonal, Natural, Spiritual) Kesulitan Belajar (a.l. Hyperaktif, ADD/ADHD, Dyslexia/Baca, Dysgraphia/Tulis, Dyscalculia/Hitung, Dysphasia/Bicara, Dyspraxia/ Motorik) Lambat Belajar ( IQ = 70 90 ) Autis Korban Penyalahgunaan Narkoba Indigo

K.

L. M. N. O.

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) 2. Jumlah penyandang cacat usia sekolah (5 18 th) ada 21,42 % dari seluruh penyandang cacat.

(Analisa Deskriptid PMKS 2003) - BPS dan Depsos

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Tabel 5.a. Persentase Penduduk menurut Tipe Daerah dan Kecacatan Tahun 2003

Tipe Daerah (1) Perkotaan Pedesaan Perkotaan + Pedesaan

Cacat (2) 0,61 0,76 0,69

Tidak Cacat (3) 99,39 99,24 99,31

Total Jumlah Penduduk (4) 100,00 (90,3 juta) 100,00 (124,0 juta) 100,00 (214,3 juta)

Tabel 5.b. Jumlah Penyandang Cacat menurut Tipe Daerah Tahun 1998, 2000, dan 2003 (dalam jutaan)

Tipe Daerah (1) Perkotaan Pedesaan Perkotaan + Pedesaan

Sumber Data BPS- Modul Sosial Budaya, Susenas 2003

1998 (2) 0,43 1,09 1,52

2000 (3) 0,51 0,98 1,49

2003 (4) 0,55 0,94 1,48

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Persentase Penyandang Cacat menurut Kelompok Umur dan Tipe Daerah, Tahun 2003
Kelompok Umur (Tahun) (1) 04 5 10 11 18 19 30 31- 59 60 + Total Perkotaan (2) 2,78 8,56 12,04 23,77 30,71 22,14 100,00 Pedesaan (3) 3,02 8,25 13,66 17,89 33,50 23,67 100,00 Perkotaan + Pedesaan (4) 2,93 8,36 13,06 20,06 32,47 23,10 100,00

Sumber Data BPS- Modul Sosial Budaya, Susenas 2003 13

Persentase Penyandang Cacat menurut Jenis Cacat dan Tipe Daerah, Tahun 2003
Tipe Daerah
Jenis Cacat Perkotaan (1) Mata/buta (A) Rungu/tuli (B) Wicara/bisu (F) Wicara dan rungu (F-B) Tubuh/fisik (D) Mental (C) Jiwa Ganda (G) Jumlah (2) 11,03 6,85 6,88 5,43 35,56 19,55 8,85 5,85 100,00 Pedesaan (3) 14,49 7,42 8,66 4,07 35,06 13,89 10,88 5,52 100,00 Perkotaan + Pedesaan (4) 13,21 7,21 8,00 4,57 35,25 15,99 10,13 5,64 100,00
14 Sumber Data BPS- Modul Sosial Budaya, Susenas 2003

Persentase Penyandang Cacat menurut Jenis Cacat dan Penyebab Kecacatan, Tahun 2003
Penyebab Kecacatan Jenis Cacat Bawaan sejak lahir (2) 33,98 11,34 80,88 71,21 37,78 66,46 24,18 57,47 44,60 Kecelakaan/ Bencana Alam/ Kerusuhan (3) 15,99 7,92 5,63 7,38 25,7 11,24 23,86 16,13 17,66 Penyakit (4) 50,03 80,74 14,29 21,41 36,52 22,30 51,96 26,40 37,74 Total (5) 100,00 100,00 100,00 100,00 100,00 100,00 100,00 100,00 100,00
15 Sumber Data BPS- Modul Sosial Budaya, Susenas 2003

(1) Mata/buta (A) Rungu/tuli (B) Wicara/bisu (F) Wicara dan rungu (F-B) Tubuh/fisik (D) Mental (C) Jiwa Ganda (G) Jumlah

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 (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 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 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 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 , expensive Simple high technology Complex , secure , safe, confidential

Who are the actors for early detection?

Cadre Ibu PKK

Specialist Health personels

Clinical Picture of Congenital Hypothyroidism Neonatal Period Poor sucking Macroglossy Abdominal Distended Umbilical hernia Dry skin Constipation Weakness Puffy face

Short Stature Mixedema Mental retardation Too Late !!!

CRETINISM

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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 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 childs activity level 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) 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 OPTIMAL SESUAI KEMAMPUAN / KONDISI ANAK 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
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REHABILITASI :
UPAYA PEMULIHAN , KOREKSI, PENAMBAHAN DAN PENGEMBALIAN KE FUNGSI TANG SEHARUSNYA UPAYA MENGOPTIMALKAN TUMBUH KEMBANG SESUAI KONDISI & KEMAMPUAN ANAK

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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 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 and Framework for Action (1994) the fundamental principle of inclusive school is that all children should learn together, wherever possible, regardless of any difficulties or differences they may have.

4. - UU No. 4 /1997 ttg Penyandang Cacat

( Diafabel, dengan kebutuhan khusus)

Pasal (5 ) Setiap penyandang cacat mempunyai hak dan kesempatan yang sama dalam segala aspek kehidupan dan penghidupan penghidupan

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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 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.
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Deklarasi Bandung (Nasional) Indonesia Menuju Pendidikan Inklusif 8-14 Agustus 2004
a. Menjamin setiap anak berkelainan dan anak berkebutuhan khusus lainnya mendapatkan kesempatan akses dalam segala aspek kehidupan, kehidupan, baik dalam bidang pendidikan, kesehatan, sosial, pendidikan, kesehatan, sosial, kesejahteraan, keamanan, kesejahteraan, keamanan, maupun bidang lainnya, lainnya, sehingga menjadi generasi penerus yang handal. handal.

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Deklarasi Bandung (2) .

b. Menjamin setiap anak berkelainan dan anak berkebutuhan khusus lainnya sebagai individu yang bermartabat, bermartabat, untuk mendapatkan perlakuan yang manusiawi, manusiawi, pendidikan yang bermutu dan sesuai dengan potensi dan kebutuhan masyarakat, tanpa masyarakat, perlakuan diskriminatif yang merugikan eksistensi kehidupannya baik secara fisik, psikologis, ekonomis, fisik, psikologis, ekonomis, sosiologis, hukum, sosiologis, hukum, politis maupun kultural

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Deklarasi Bandung (3)

c. Menyelenggarakan dan mengembangkan pengelolaan pendidikan inklusif yang ditunjang kerja sama yang sinergis dan produktif antara pemerintah, institusi pendidikan, institusi terkait, dunia usaha dan industri, orang tua serta masyarakat. d. Menciptakan lingkungan yang mendukung bagi anak berkelainan dan anak berkebutuhan khusus lainnya, sehingga memungkinkan mereka dapat mengembangkan keunikan potensinya secara optimal. e. Menjamin kebebasan anak berkelainan dan anak berkebutuhan khusus lainnya untuk berinteraksi baik secara reaktif maupun proaktif dengan siapapun, kapanpun dan dilingkungan manapun, dengan meminimalkan hambatan.
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Deklarasi Bandung (4)

f. Mempromosikan dan mensosialisasikan layanan pendidikan inklusif melalui media masa, forum ilmiah, pendidikan dan pelatihan dan lainnya secara berkesinambungan. g. Menyusun rencana aksi (action plan) dan pendanaannya untuk pemenuhan aksesibilitas fisik dan non fisik, layanan pendidikan yang berkualitas, fisik, kesehatan, rekreasi, kesejahteraan bagi semua anak berkelainan dan anak berkebutuhan khusus lainnya.

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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 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
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
Chromosome abnormalities Recognizable syndromes Struktural central nervous system malformation Complications of prematurity Perinatal conditions Environmental / teratogenic causes Cultural-familial mental retardation Metabolic / endocrine causes Unknown
_________________________________________________

percent 4-28 3- 9 3-17 2-10 8-13 5-13 3-12 1- 4 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 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. 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 prevention

Primary 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 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: 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 Mothers blood: alpha-fetoprotein, triple test Less confirmation

What the Problem in DS ?

Health medicine Education Psycho-Social Etc