NGHIEN euu - TRAU BBI
MOT SO VAN DE VECHiNH SACH VA THUC THI CHiNH SACH DOI VOTI THE TUKY
0 VIET NAM HIEN NAY
I f r p y ky 11 mpt dang khuyet tat phat triln tdn X tai sudt cupc dd, thuflng xuat hiln trong 3 nam dau dd. Ty ky II do rdi loan thin kinh gly Inh httflng den chttc nang hoat dpng cQa nio bp. Ty ky CO the xay ra fl bl't ctt ca nhin nao khdng phan bilt gId tinh, ching tpc hoac dieu kiln kinh t l - x l hpi. Dac ddm cQa ty ky la nhttng khiem khuydt ve tuong tae x l hpi, giao tilp ngfln ngtt v l phi ngfln ngtt v l cd hanh vi, sfl thich, hoat dpng mang tinh ban hep, lap dl lap lai"'". Trttflc Stt phlt triln nhanh chflng ve sd ittpng tre ty ky (TTK) dttpc phat hiln, sy phttc tap, tie dpng llu dai va nghiem trpng cQa ty ky (TK), nln fl nhieu qudc gia trln thd gid van d l nay da nhan dupc su quan tam sau sic eQa cpng ddng, xa hpi. 6 Vilt Nam, TK II van de tuong ddi md me, cle djeh vu y te, giao due ddi va TTK cfln rat han ehd, nhan thttc cQa cflng ddng, x l hpi ve TK, TTK con chtta diy d i , tham chi sai lenh gay thlm nhttng khd khan cho tre va gia dinh cQa tre. Oac bilt, van d l chinh sach va thyc thi chinh sleh ddi vdi TTK fl Viet Nam cdn nhilu han ehe, bat cap.
d Viet Nam, chinh sach dd vdi TTK v l gia
VUHAJVAN*
dinh dupc quy dinh trong h i thdng van bin chttong trinh chung v l blo trp x l hpi, h i thdng chuang trtnh chmh sich dfl'i vd tre em; he thdng cac chuang trinh, chinh sach ddi vd ngud khuylt tat v l tre em khuydt tat; he thdng cac chuang trinh, chinh sach cham sdc dd tupng trong cae co sfl blo trp x l hpi. Tuy nhiln, trong nhttng he thdng van bin nay, TTK chua dupc de cap cy thi ma chQ yeu Idng ghIp vd clc dd tupng khuyet tat khac. Mae du TK da dupc cdng nhan la mpt khuyet tat nhung dfl la dang khuydt tat nao, thi hien nay chua co mpt van bin phap luat nao nlu ro. Kinh nghilm ttt nhilu nufle trln the gid eho thay khi TK dupe ghi nhan la mpt dang khuyet tat rilng biet'", cac che dp hd trp y te, giao due, blo trfl xa hpi... ddi vfli TTK va gia dinh rat diy dQ, dap ttng dupe nhu cau thyc td.
6 Vilt Nam, trong dilu 3 Luat Ngud khuyet
* Thge si, Hgc vidn An nmh Nhdn ddn.
1 - Nguyin "Thi Hodng Yen (2013), TU ki- Nhiing vdn di ly luin vilhUc tiin, Nxb. Bai hoc Sup/iam, tr 12.
2 - U My, tu ky dUgc Trung lim kiem sodt vd ngdn ngtta benh dich Hoa ky (CDC) ggi Id khuyet Idt phdt trien (hllp://www.ctlc.gov / ncbddd / autism / index, html), d Singapore, tu ky duac md td ii rdi logn phdt tri£n lien quan den ndo bd (http:/ /www.
autism.org.sg/main/faq.php?cal=aulism). d Thdl Lan, trong udn bdn pliip luit, lu ky duac neu ten trong mot n/iam phdn dang khuyet tdt, dd li: Suy giam kha ning tim than hodc hdnh vi hgdc tU ky.
hllp: / / www.aulisliclhaiarg /Tfiaitand_AU_Situati on_Reoised_2%5Bl%5B.pdf.
TAP CHi GIAO DUC LY LUAN - S(5 221 (2014) 35
tat ban hanh ngly 1/1/2011 cd phdn loai 6 nhdm khuyet tat la:
1 - Khuyet tat van dpng 2 - Khuylt tat nghe, nd 3 - Khuydt tat nhin
4 - Khuydt tat than kinh, tim than 5-Khuyet tat trf tui 6 - Khuyet tat khlc.
Nhu vly, theo Luat Ngudi khuyet tat hiln hlnh,TK khflng phai la mpt dang khuyet tat rieng bilt, ma se dupc quy v l mpt trong 6 dang khuydt tat trln. Thyc te nay dat ra nhttng van de bat cap nhtt sau:
TK la mpt phd rpng v l la dang khuyet tat cyc ky phttc tap va khflng gifli han nhttng Fnh vyc Inh httflng. Ngttd TK cd thi cd rat nhieu, tham chi la toan bp cac dang khuyet tat tai Dilu 3 cQa Luat Ngud khuyet tat: nhilu ngua TK cP thi khd khan ngay trong cac hoat dpng sinh hoat hlng ngly, dac bilt la van dpng tinh, nhu edi cue quan ao, tam giat,,,; nhieu ngud TK s l khdng bao gid cd ngdn ngtt, va da phan ngdn ngtt eQa nhttng ngttd TK efl ngdn ngtt cung bj han che; nhieu ngua ty ky bj rdi loan xtt ly Im thanh, thlm chi vile nghe mpt am thanh nhat djnh nio dd cung khiln mpt sd ngua TK cam thay dau dfln; rat nhieu ngudi TK khflng thd nhin vao ngttd ddi diln khi ndi ehuyen, vi hp khdng thi x i ly duoc thong tfn bleu elm tren mat ngua ddi dien,,. Nhuvay, vile xIp TK vao mpt dang tat cu thi nio v l khuyet tat van dflng, khuyet tat nghe ndi, khuydt tat nhm cQng la khflng ehinh xac.
- Neu xep TK vao "khuydt tat than kinh, tam thin" la khdng dung vd bin chat cia khuyet tat TK'". Trln thue td efl rat nhieu TTK diln hinii.
3 - Ngudi TK chi gap klid klian trong giao tiep, ui khdng hieu dugc cdc ky hieu khdng ldi nhU cu; chi, Xflc cdm, cdc tit ngd triiu tuang, nen cd nhiing liii ndi hodc hdnh vi bat thudng. Ddi khi ui khdng biel cich lim ngudi khdc hieu minh, nen ngudi TK cd the lg ra gign dU hodc IU cd lip. Nhin bieu hien be ngoii, ngudi ta cd l/ie thay gidng mat ngudi cd khuyet tdt
rat khfl khan trong tttflng tie xa hdi, nhung khflng cfl'flay d i diu hilu dac trung eQa than kinh hay cham phlt trien, neu xdp TK ehung vd mpt trong hai nhdm nay, s l rat kho khan v l thieu chmh xac khi cac hpi ddng da phuong xlt cflng nhan khuydt tat cung nhtt phln hang khuyet tat (cac mtte nang, trung bmh, nhe).
Ngoai ra, vile phan loai nly efl the din ddn nhttng rQi ro vd mat hda nhap cpng ddng, ve phln biet ddi xtt, ky thj cho ngufli TK.
- Neu xdp TK vao nhdm "cham phat triln trf tue" s l khflng phu hop vi theo nghiln cttu cia eae nhl khoa hpc, trong sd TTK, da phan TTK efl kim theo cham phat tridn, mpt sd cd trf tui bmh thuflng va cfl rat it TTK rat thflng minh. TK la mpt rd loan efl mtte dp rat khac nhau ttt rat nhe ddn rat nang, nhttng phan Ifln ngttd co rd loan tu ky vin cd khi nang hda nhap cpng ddng va cfl thi cfl cdng hien fl mtte dp khac nhau cho xa hpi.
- Ndu dua TK vdo dang "khuyet tat khac":
dilu nly CO thd din den viec cho rang TK II mpt dang khuyet tat khflng nghilm trpng, v l ty II mlc TK khdng cao.
Nhu vly, dua TK vao bat ky dang nao trong 6 dang khuylt tat hien hinh cung khflng hpp ly hoan toan. VI vly, viec phln nhflm rieng cho TK s l giflp cpng ddng nhan thtte ro ring hon ve TK, nhan thtte dttpc mtte dp nghilm trpng, va ed chmh sleh rd rang hon cho nhflm khuyet tat nay Quan diem nay holn toln phu hpp vfli xu huflng phan loai TK fl cac nttflc filn tidn tren the gid hiln nay. Ong Daniel Mont, thupc nhdm ehuyin gia eao cap cQa Ngan hlng Thd gid dang hd trp xay dung thdng tu httflng din thi hanh Luat Ngttd khuydt tat cho bilt: "fl My, each phan dang khuydt tat khac vd Viet Nam. Dd ngupc vd khuyet tat t h i chat (vi du van dpng), la
Ihdn kinh, nhung chua cd nghien cUu ndo pfiit hien duac rd rdng rdi loan chiic nang ndo cua ngudi TK, cung khdng cd logi thuoc: nao dugc cha li hiiu qua dediiu Iri TK
36 TAP CHi GIAO o g c i * LUAN-S6 221 (2014)
NGHIEN cuu- TRAU BUI
khuyet tat than kinh "mental" trong dfl cd "khuyet tat tri hjl" - intellectual, "khuyet tat tam than" - psychology v l "khuyet tat phat tridn'. Do phap luat Viet Nam tach rilng khuydt tat trf tup v l than kinh - tam than, nln so vdl luat My, khai nilm
"khuylt tat phlt tridn", trong dd cd ty ky, d l bj bidn mat. Do vay, trong luat Vilt Nam, khflng nen d l khuydt tat tu ky bien mat hoac lan trong elc dang tat khac nhu tri tue hay than kinh - tam than, Ngln hlng the gid mong mudn ty ky dupc ehu y mpt each thoi dang ttt eae Bp - nglnh liln quan."'"
Viec xlc dinh TK la loai khuyet tat nao trong Luat Ngua khuylt tat rat quan trpng vi nd liln quan den chinh saeh eQa nha nuflc danh cho TTK sau nly trln cac Fnh vyc nghiln ettu khoa hpe, y td, giao due... Ngoai ra, day la co sfl phap ly dd TTK v l gia dinh cQa tre dude thy huflng cac chinh saeh y td, gilo due, an sinh x l hpi...
Do vay, trttflc nhttng bat cap trong vile phln loai khuydt tat cho TTK da khien TTK va gia dinh cQa tre gap nhieu khd khan, dac bilt la trong van de tidp can djch vu y td, giao due.
Chinh sach chua day d i , rd rang, cung vfli sy thieu thdng nha't v l quan diem, ban ehd v l nhan thttc fl cac dja phuflng khac nhau trong vile xac nhan khuydt tat cho TTK, cho rang TK la mpt benh co thd chtta khoi ehtt khflng phli mpt dang khuyet tat nln mpt sd dja phttflng da ttt chdi llm hd so cdng nhan khuyet tat eho tre ty ky. Nhilu cha me TTK da gap khfl khln trong qua trinh xin xac nhan khuydt tat cho con, do vay nhilu TTK v l gia dmh eQa tre da khflng dupc thu huflng cac uu dai v l gilo due, y te, an sinh xa hpi nhu eae dd tupng tre khuyet tat khae. Dilu dp da lam cho nhttng kho khin vdn cd cQa TTK va gia dinh cQa tre trfl nen tram trpng hfln. Nhilu TTK da khdng thi din truflng do bj ky thj, do khdng cfl sy hfl trp ttt nha trttflng; nhieu TTK Ifln len khdng
4 - http://pwd.vn/diendan/threttds/tu-ky-la-dang- khuyet-lal-nao.2298/
ed khi nang tu eham sfle ban than nhung khflng dQ Ulu ehuan theo quy djnh d l vao cac trung tam nud duflng, bao trp xa hpi; nhilu gia dnh rd vao tmh canh nghlo dd do phli chi tra nhilu kholn phi trong qui trmh trj lieu, ean thiep cho con, nhieu cha me eQa TTK phai ttng phd vfli nhttng cang thing ma khdng cfl sy hd trp ttt cpng ddng... '
Ttt nhttng van d l da phdn tich, nhim giup TTK cd cd hd binh dang trong tidp can, thy huflng cac chmh sdch uu dai cua Ding va Nha nudc, trudc mat can lam tdt mdt sd van d l sau:
- Mot ia, cin tang eudng truyin thong nang eao nhan thtte cia cflng ddng, xa hpi v l chinh ban thin gia dinh cd TTK ve hpi ching nay va su can thiet phli ed ehinh sach uu tiln ddi vfli TTK hd trp gia dinh TTK
- Hai ia, can thQc day nhanh vile nghiln cttu xay dung ehinh sach dac thu ddi vdi TTK va he trp gia dnh cd TTK. Trong dd, can d l xuat dieu chinh cac che dp chinh sach hiln khdng edn phu hpp nhu dieu chinh mtte trp cap x l hpi, mtte hfl trp cham sflc, chmh sleh hd trp giao due, ho trp y te... ddi va TTK vd gia dinh cQa tre.
- Sa /a, tren thyc te quy djnh cQa Luat Ngua khuylt tat, cung nhu cac van ban huflng din v l xac djnh mtte dp khuydt tat thi TK hien nay da dupe nhin nhan la dang khuylt tat khac, mac dU chua thyc sy thfla dang nhung can thidt phli dupc thye hiln day d i cac chmh sach ddi vdi TTK, gia dinh TTK. Tfly tttng mtte dp khuylt tat se cfl nhttng chinh sach eu t h i hd trp. Tuy nhiln, dly II nhflm dae thu nln cung can phai cd nhttng biln phap, ehinh saeh dac thfl va uu tiln hdn.
- Sdn ia, thuc day nhanh vile xac djnh mtte dp khuyet tat va cap giay xac djnh mtte dp khuylt tat ddi va TTK. O l lam dttpc viec nly ngoai viec ban hanh cac van bin httflng dan can cd tai Hlu huflng din v l van d l TK, tap huan can lip nganii Lao dpng thuflng binh xa hdi, huflng din cac dja phuong triln khai thye hien trong qua trinh thyc hiln xac djnh mtte dp khuydt tat.B
TAP CHi GIAO Dgc LY LUAN - s 6 221 (2014) 37
