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 :

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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

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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

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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

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• 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

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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 )

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- 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)

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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)

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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

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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

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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

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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

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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

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Constipation

Weakness

Puffy face

Short Stature

Mixedema

Mental retardation

CRETINISM

Too Late !!!

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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 • 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

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• 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

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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 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

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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

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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, ,

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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

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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)

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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

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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