jp of of Juq Yaeda- Rh.D.

Juq Yaeda- Rh.D.

Dr. Jun YAEDA,

is an associate professor of the Rehabilitation Course, Lifespan Developmental Sciences Program, Graduate School of Comprehensive Human Sciences, at the University of Tsukuba

in

Tokyo, Japan. He has worked in the

field of

rehabilitation for more than 30 years. He has over 100 professional publications in the fields of vocational rehabilitation, rehabilitation counseling, social work, and special needs education.

Cunently

he is the board member, the chair

of

research

&

ethics, and the

first

intemational chair of Japan Society

of

Vocational Rehabilitation (JSVR) and Japan Academy ofComprehensive Rehabilitation (JACR), the president of Japan

Rehabilitation Counseling Association (JRCA), an international board member

of

Global Applied

Disability

Research and Information Network on Employment and Training

(GLADNET),

Associate Directot

of

Transformative Change: Educational and Life Transition

(TCELT)

Research Centre at School of Education Social Work and Community Education, University of Dundee, Scotland, lhe TOMODACHI

Disability

Leadership Training Program

Advisory

Board, University

of

Massachusetts at Boston, USA, ^and the intemational advisory committee member of Japan Society

of

Rehabilitation of Persons

with

Disabilities (JSRPD) of Cabinet Office, Govemment

of

Japan.

He also serves on the advisory editorial boards of Journal of Rehabilitation Research, Policy and Education ^(Springer Publishing Company), The Australian

Journal of Rehabilitation Counselling (Cambridge University Press), Japanese

Journal of

Vocational Rehabilitation (Japan Society

of

Vocational Rehabililation), Japanese Journal of Psychiatric Rehabilitation ^(Japanese Association of Psychiatric

Rehabililation), and Japanese Journal of Social

l(elfare

(Japanese Society

for

^{the Study}

of Social

ll/elfare, JSSSIil). He has been listed

in

the

Marquis llho's llho

in the

lltorld,

since 2015.

His areas of current interest include rehabilitation philosophy, rehabilitation collaboration, evidence-based practice (EBP) training, vocational rehabilitation for the individuals

with

Early Onset Dementia (EOD) and those

with

Traumatic Brain

Injury (TBI), cuniculum

development for rehabilitation counselors in Japan, and intemational rehabilitation counseling education and research.

He can be reached at: [email protected]

jp

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+

Yuichiro Haruna. Ph.D.

Yuichiro

Haruna, Ph.D. (Health Sciences) is the Principal Investigator, National Institute

of

Vocational Rehabilitation,

3-l-3

Wakaba, Mihama-ku, Chiba

city,

Japan.

He graduated from the University of Tokyo, and got MS and Ph.D. from the Graduate School of the

Univenity of

Tokyo, majoring health system administration.

Since 1994, he, as a staff researcher in the National Institute

of

Vocational Rehabilitation

(NIVR),

had conducted several national surveys

of

persons

with

disabilities, employers, and service providers, lead demonstrative

multidisciplinary

cooperation for supporting employment of ^persons

with

chronic conditions.

Presently, as the principal investigator on social system in

NIVR,

he is leading a national demonstration program for system changes and professional trainings across fields including medical care for mental

disability

or chronic conditions, welfare, education and labor. Also, he is a member of the National Policy Committee on Rare and Intractable Diseases, as a specialist of

work

supports.

?, i:.,#.*,.i

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AcE oF ONSE- oF sorvrE r,irAJoR IRD : t ^cela0ve cditb

. Ts p..kin Zb*rd 5(b r Partinsonl db€ase

. _Ali.riloa

: Sysbt c lupu6 erythernsb€ls (SLE)

. P-tit 2(b-1(b : Crohnl

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.15-5('!

BACKGRoUND oF

INTRACTAIJLI RARE D sEAsrs (lRD) N JAPAN

j ln 1 92, 8 natonal medbal l€Egardl grani sta.bd ln

ode. b derr€lop

.w

dkrgncb and t€€lnEoB br

certain rat€db€ss€s:

sffi

^{with 8} db€6€s.

ln thca d{d€6, flanl(s b nEw tgatrEnb, many IRD bsams conbdled h chmnb condilion, al0lqlgh dr€y slill can not comdetely cu.sd.

: Wilh medlcal prog.ess, rE!,y .alB dbeas€s wilhorrt any eqieblblEd treatineob havo b€en kepl ktentfiod.

i ln 20i 5, a .6N IRO legiEladon waE €lltu Eed nd ody tor medid .€s€rch, bul abo br m€did sQens€

3

M?

CLRRfNT STAT!s oF PFRSONS wrrH IRD rN JAPAN

DOb H

Clmric.ordftbr

Hospitalizatbn (lyear)

' ^{O dey: 7096}

.-llrlo:2096 . 2-Am: E%

. Tiro- :a%

Hospitd vh[ ^(fy@r) ' - 5d: 25%

.6-1od:25%

t1-1S: 30%

1*.2W.

Profih'ton of EnTbtrs

ot ll€Slct Pdr&'rtd: <t096

. u'ntbd: <20L .mdic.l fotl@lp

.oiFti.ri _!*dicniat .ilftqld

.liftalpF.a _ .mCorld $pF !

E-.and-

RESEARcFES oN EI\rp!oyi.iENT sl.tppoRTS FoR pERSONS ,A _I H lN TRACTABLE RARE D SEASES Al NIVR

SuNeys of Pgnons with lntreiabl€Rale Diseas6

K-_ffi

Suryeys of Supporting Ploftssionals among Labor, Healh and Medilne, and \t glfare

E G

ARE IHEY IN WORK?

Yes

71% o{ persoru wih IRD have *orked with IRD in Gcent 10years.

58% a,e emdoyed.

5.5* d tl€m 5ro sld${oavilg 5% are seeking a Fb.

82i6 ot iob seekgB wih IRD hav€ lol a iob h tlc€nt 10

1 30/6 a.e unemdoy€d and wari to wo.k, but not seldng a Pb.

2rl% don'l want b ^work

Bur.

^.

Si(* Loav€g

63* or .mpby€.s with IRO oe.dl.nc.d et ban on6 lt;t

bav€(>lnF) h lac.n l0 y€er3.

R6ionalion3 due to IBD

,l{'% ol dnpbytca wib IRO hav. quitod a Fb h lllslin to IRD h rlc.rn 10 ytsr3.

tl : \/|oluntsy: lrublfty to yort dll b IRD

P: Wuntary: To r€Dsl€nco t€sti€nl, l b, wetsb€lno, ard re: Ollntllrd ^by employer du€ lo IRD

,a: E)dlld ^{p€rbd df} a Fa\/6 ol ab!€oce Siualioo afier quiitihO a irb

57t6 ottl.ln .irl€d s€rhg €€nrplqFEnt dhh:

I mo.((t%).2{.no.(2396), 5.4 nD.(1,1%), s lnc (196) _",S

4:l% brt rillirgl€ss to srt

T-: N.

^...,

B-:-.

lRD

P _-,

Na-

. ;- (S:::;

,'3-iF 20'15) Good environments should be

developed, where patients with IRD can enclose their disease securely, so that treatment and employment can be integrated.

By supporting employer's employment managemont and anli-discrim inative sfforb By coordinatjng cornmunity supporb ior stabb employment and job relention of persons with IRD

HoW ABOUT SUPPORTS FOR RETURN TO WORK DUR NG A SICK LEAVE?

Oosbls erplanation b th€ patient of oudook br

b€Etrnent and €tum b work 52%

Emdoyer's provision of inio.rmlion about and suppod8 tor adminbtraliv€ loav€ and l€tum b uort

11%

Signifcant ofiects ot the suppo.l.s Dc.r!a!o h problcm3 h ca?tah bbor *o.fs

Molb listtliz€d phydc.l condilih in a .atumod worl

c DM

z

f jimm

M

^knn|nn[

WHY DoES A sEcuRE DtscLosuRE oF IRD N/ATTER?

00% ot amploy€€s with IRD do not disclose th€ir disease, nor equesl accommodations in wod(place, e\€n if th€y think it ne€(bd

br

their heallh, sabty, and stable employment.

. _{oi8cbsed apdicanb atB} very ofren ernployod.

. _{ln bar} ot unfavorable condidon due b ^prejudlce

and stigma on IRD

.) From April 2016, th€y ar€plobcbd by antt- discrimination br ^p€Gons with disability, and entilbd to Easonabl€ eccommodation.

CoMN{uNrry SuppoRTs FoR STABLE EMpLoyN4ENr AND JoB RETENTION OF PFRSONS WITH IRD

CoNcrusroN

. Pl€3antly, .€ady half of employeEs with IRD in Jap8n haw quitbd rvoft due to the diseasas.

. ) Most of the tesignations ara suggesied lo b6 prsv6ntod by propor iob d$cdptions, wofiplsce ScCornmodatbns, and community supporb.

:, R€tum lo xorl( should be a part of intag.al procsss63 of pl€rrsr ion ofthe unnecesaary t€sbndion.

: Rocont enfurcern€. of laws on IRD and on anli- di3crimination and reasonabl€accommodation should r6volute th6 employment situalion ot por8ons with lRD,