EQUALS Submission on Participation in Decision Making

8/17/2019 EQUALS Submission on Participation in Decision Making

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Equals Centre for Promotion of Social Justice, INDIA

1. Please provide information on the legislative and policy framework inplace in your country related to the status, establishment, resourcing,and functioning of representative organizations of persons withdisabilities at the national, regional and local levels1;

Legislation and policy related to disability in India is primarily the responsibilityof the Federal nits i!e! the State "o#ernment$! %o&e#er, the disability la& inIndia is laid do&n by the nion by #irtue of Item '( in the nion list pertainin) toimplementation of treaties and con#entions

Establishment of or)ani*ations representin) persons &ith disabilities are)o#erned accordin) to their le)al structure! +hey could be a re)istered +rustunder the Indian +rusts Act, '--$, or respecti#e State le)islations., a Companyunder Section '/ of the Indian Companies Act, '0/1 or Section - of the IndianCompanies Act, $2'3., or as a Society under Section $2 of the Societies4e)istration Act.! If the function of the or)anisation is to deli#er ser#ices then itneeds to be reco)ni*ed by C%AP+E4 5 of Persons &ith Disabilities Equal

6pportunities, Protection of 4i)hts and Full Participation. Act '00/3

, or)anisationsin#ol#ed in capacity of rehabilitation professional also need to be reco)nisedunder 4ehabilitation Council of India Act, '00$(! In addition to this, or)anisationsrepresentin) persons &ith Autism, cerebral palsy, intellectual disabilities andmultiple disabilities may re)ister themsel#es &ith the National +rust for 7elfare ofPersons &ith Autism, Cerebral Palsy, 8ental 4etardation and 8ultiple DisabilityAct, '000/

esourcing of representati#e or)anisations of persons &ith disabilities, ifre)istered under the Persons &ith Disabilities Act, '00/9 the National +rust Act,'000 or the 8ental %ealth Act, '0-:, are eli)ible for fundin) by the 8inistry ofSocial Justice and Empo&erment under the nion "o#ernment or the departmentresponsible for &elfare of persons &ith disabilities at the State le#el! 6r)anisations

can a#ail funds from both the nion and the State! +his fundin) can be a#ailedonly if the pro;ect is &ithin the )uidelines of a speci


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persons &ith disabilities are mandated to submit audited accounts to the State"o#ernment that has funded the or)anisation!

4epresentati#e or)anisations in India primarily function as ser#ice deli#ery,capacity buildin) or employment facilitation or)anisations! +here are also fe&or)ani*ations &orHin) on ad#ocacy and policy inter#entions!

$


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#. Please provide information on e"isting legislation and policies aimed at ensuring that persons with disabilities and theirrepresentative organizations, including children with disabilities, are consulted and involved in decision$making processesthat directly or indirectly concern them;

+he le)islation and policy are t&ofold one is &ith re)ard to disability speci


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Section 3 $. l.

State Coordination Committee

Similar function at the Statele#el Section '-.

Similar constitution in Section '3! Similar position

Central E=ecuti#e Committee

Concerned &ith e=ecutin) thepolicies framed by the CentralCoordination CommitteeSection '2.

Similar representation of persons &ithdisabilities as the Central CoordinationCommittee Section 0.

Similar position

State E=ecuti#e Committee

Concerned &ith e=ecutin) thepolicies framed by the StateCoordination Committee

Section '-.

Similar representation of persons &ithdisabilities as the State CoordinationCommittee Section '3.

Similar position!

Commissioner of Persons &ithDisabilities Chapter 5II.

Not mandated to be a person &ith disabilityor consult persons &ith disabilities!

+ill date, only one person &ith disability has beenappointed as Commissioner!


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4ole is coordinatin) the &orH ofthe Commissioners at the StateKe#el9 monitorin) the utili*ationof funds disbursed by theCentral "o#ernment9 taHe stepsto safe)uard the ri)hts andfacilities made a#ailable topersons &ith disabilities

State Commissioner for Persons&ith Disabilities Chapter 5II.

Similar role at the State le#el

Not mandated to be a person &ith disabilityor consult persons &ith disabilities!

3ental 4ealth !ct, 156

&ecision making 0ody androle

Person with &isability mandated 2omments

Central and State Authority for8ental %ealth Ser#ices ChapterII.

Not mandated to ha#e a person &ithdisability on the oard or consult persons&ith disabilities!


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Lisitors

+here should be a panel of#isitors in each State to monitorthe conditions of persons inmental health institutionsSection 30.

Not mandated to ha#e a person &ithdisability on the panel or consult persons&ith disabilities

7ational 8rust !ct, 1



National +rust for 7elfare ofPersons &ith Autism, CerebralPalsy, 8ental 4etardation and8ultiple Disability

+o mana)e the functionin) ofthe +rust

Section 3 pro#ides, inter alia, nine persons tobe appointed as members from amon)st there)istered or)anisations out of &hich threemembers each shall be from #oluntaryor)anisations, associations of parents ofpersons &ith autism, cerebral palsy, mentalretardation and multiple disabilities and fromassociations of persons &ith disability!

+he National +rust 4ules do not pro#ide that any ofthe persons from associations of persons &ithdisabilities must be a person &ith disabilitythemsel#es thou)h it has been done in practice!


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Kocal Ke#el Committees

+o decide on )uardianshipapplications made by or onbehalf of persons &ithdisabilities

Section '3 $. pro#ides that the Committeeshall include a person &ith disability asde


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epresentation of the People !ct, 1/:, and 1/1



+he Election Commissionresponsible for the re)istration

of #oters in India

+here are no pro#isions for the speci


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National Commission for 7omen

In#esti)ation and e=aminationof all matters relatin) to the

safe)uards pro#ided for &omenunder the Constitution andother la&s!

No! +he quali


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2ommission for Protection of 2hild ights !ct, #::/



National Commission forProtection of Child 4i)hts

In#esti)ation and e=aminationof all matters relatin) to thesafe)uards pro#ided for childrenunder the Constitution andother la&s

Section 3'. pro#ides that the members &illinclude persons of eminence, ability, inte)rity

and standin), inter alia in the


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on disability matters, and shallfacilitate the continuouse#olution of a comprehensi#epolicy for the empo&erment ofpersons &ith disabilities and thefull en;oyment of ri)hts

at least


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&ith Disabilities

Similar to National CommissionSection -1 '..

$.. Section 0$!

Special Court

+o be noti


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8ental %ealth 4e#ie&Commission

Appoint and remo#e members

of the 8ental %ealth re#ie&oard9 )i#e )uidance to theoard on interpretation of thepro#isions of this Act and theprocedures to be follo&ed bythe oard etc!

Section :/ 3b. mandates that one of the


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Central 8ental %ealthAuthority

Concerned &ithre)ulatin)Bsettin) standardsfor mental health facilities,maintainin) re)isters of suchfacilities and of mental health

professionals and carryin) outtrainin) functions

Section 3( $. l. mandates that t&o personsrepresentin) persons &ho ha#e or ha#e hadmental illness, to be nominated by the Central"o#ernment should be members out of a totalof '1 members!

Any #acancy in, or any defect in the constitution ofthe Authority shall not be a )round for in#alidatin)any of the proceedin)s, so persons &ith mental illnesscould be e=cluded!

State 8ental %ealth Authority

Concerned &ith there)istration of all mentalhealth establishments in theState and maintain and publisha re)ister of suchestablishments and to de#elopquality and ser#ice pro#isionnorms for dierent types ofmental health establishments

in the State etc!

Section (1 $. has a similar mandate as abo#e! Similar issue

7ational 8rust )!mendment- 0ill


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&ecision making 0odyand role


+he oard of the National +rust for Pro#idin) %i)hSupport to Persons &ithDisabilities

+o mana)e the aairs andutili*ation of the +rust!

Section 3 (. of the ill pro#ides that the oard &illinclude the participation of persons &ith disabilitiesin the functionin) of the +rust, and for this theoard may nominate three persons &ith disabilities

on the oard as members! Such members shallha#e the ri)ht to participate in all proceedin)s ofthe oard and shall ha#e the same po&ers andduties as elected members of the oard includin)the ri)ht to #ote at oard meetin)s

Kocal Ke#el Committees

7ill be under anobli)ation to taHe all such)eneral and speci


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implementation ofpro)rammes andschemes for persons &ithdisabilities, etc!

8ember Secretary!

ehabilitation 2ouncil of 9ndia )!mendment- 0ill, #::#

&ecision making 0odyand role


4ehabilitation Council ofIndia

nder the amendment in Section 3 f. the Council&ill include ten members as may be appointed bythe Central "o#ernment representin) all thereco)ni*ed cate)ories of disabilities, &ith at leastten per cent of the total bein) person &ithdisabilities themsel#es or parents


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?. Please provide information on any consultative body or mechanism established to consult and engage withrepresentative organizations of persons with disabilities, including information about their composition, criteria formembership )nomination, appointment, election, etc.- and functioning;

&ate 7ame of2ommittee

3andate of2ommittee

2omposition 2riteria for 3embership

$2'2 Committee todraft a ne&le)islation toreplace thePersons &ithDisabilities Act'00/!

+o draft a ne& le)islationto replace the '00/ la&and introduce a C4PDcompliant le)islation

%eaded by Dr! Sudha Qaul of the IndianInstitute of Cerebral Palsy, of the '2e=pertsBN"6 representati#es only t&omembers &ere persons &ith disabilitiesthemsel#es! +he other $- members &erebureaucrats!

After ob;ections &ere raised by the Sector,/ other persons &ere inducted, of &hichthere &as one representati#e of the blind)roups, one person &ith cerebral palsy,and one person from the psychosocialcommunity0!

Appointment by the DirectorDisability. 8inistry of Social JusticeR Empo&erment, "o#ernment ofIndia

$2'$ AsoH QumarCommittee for

the 4e#ie& ofthe Ci#ilA#iation4equirementsCA4. forPersons &ith

E=amination of the Ci#ilA#iation 4equirements

CA4. on the follo&in)

Need for rede


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Disabilitiesconstituted bythe 8inistry forCi#il A#iation.

airports and airlines9Accessibility of +icHetin)System9 Complaint4edress System9 AirportsFacilities and Equipment94e#ie& of the CA4 and4ecommendations

&orHin) in the


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Disabilities ill,$2'(

$2'/ CoreCommittee,Accessible IndiaCampai)n

Constituted toimplement the IncheonStrate)y in particular

?.! Increase theaccessibility of thephysical en#ironment inthe national capital thatis open to the public!

?.0 Enhance theaccessibility andusability of publictransportation!

?.2 Enhance theaccessibility andusability of informationand communicationsser#ices!

Steerin) Committee comprisin) of a fe&National N"6s based in Ne& Delhi! 6thermembers include 8inisters of Kabour,Social 7elfare, %ealth, Sport and outh

Aairs, rban De#elopment, Ci#il A#iation,Culture etc!

Applications &ere in#ited for ci#ilsociety membership of the steerin)committee and Delhi based N"6representati#es &ere appointed for

ease of consultation! 4e)ionalcommittees ha#e also beenen#isa)ed but are yet to beconstituted!


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@. Please provide information on the eAorts undertaken at national,regional and=or local levels to strengthen the capacity of representativeorganizations of persons with disabilities, in order to facilitate theirparticipation in legislative, policy and other decision$making processes;

Stren)thenin) the capacity of representati#e or)anisations to facilitateparticipation in decisionmaHin) processes, for persons &ith disabilities orother&ise, is not mandated in any of the nion, State, or local le)islations! +heanalysis of the policy documents of the nion and some of the States re#ealedthat there &as a failure to mention a cate)ory of Mcapacity buildin) for eecti#eparticipation! +here is no item head found in the


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/. Please e"plain whether and how persons with disabilities participatein monitoring the implementation of the >nited 7ations 2onvention onthe ights of Persons with &isabilities )art. ??, para. ?-, and in thenomination of e"perts to the 2ommittee on the ights of Persons with&isabilities )art. ?@, para. ?-

7ith re)ard to the monitorin) of the implementation of the NC4PD, as of no&,India has not enacted the 4i)hts of Persons &ith Disabilities ill, $2'(, &hich isthe le)islation intendin) to implement the NC4PD! +he Department of Persons&ith Disabilities is, at present, the "o#ernmental department entrusted &ithcompliance &ith the NC4PD, Incheon Strate)y, and other such Internationalco#enants &ith re)ard to ri)hts of persons &ith disabilities! nder the 4i)hts ofPersons &ith Disabilities ill, a Central Ad#isory Committee on disability is to beconstituted &hich is to monitor and e#aluate the impact of la&s, policies andpro)rammes to achie#e full participation of persons &ith disabilities''! +he StateAd#isory Committee on disability has a similar mandate!'$ +hese bodies also ha#e

a mandate to en)a)e &ith International 6r)ani*ations but only ?to taHe up thecause of persons &ith disabilities &ith the concerned authorities and theinternational or)ani*ations &ith a #ie& to pro#ide for schemes and pro;ects for thepersons &ith disabilities@ in the nationalBstate plans'3! +he National Commission for Persons &ith Disabilities has a mandate to studytreaties and other international instruments on the ri)hts of persons &ithdisabilities and maHe recommendations for their eecti#e implementation'(, butthis is not bindin)! +he composition of the Ad#isory Committees and the NationalCommission &ith re)ard to the participation of persons &ith disabilities isdiscussed abo#e'/!

India has not si)ned the 6ptional Protocol to the Con#ention!

7ith re)ard to the nominations to the Committee on the 4i)hts of Persons &ithDisabilities in Article 3( Para 3 by State parties, the process by &hich Indianominates e=perts to the Committee is not clear and the time allotted to preparethis report has not permitted an application under the 4i)ht to Information Act toobtain this information! %o&e#er from the records of the nited Nations &e canderi#e the follo&in)In the elections of $22- and $2'2, there &ere no nominations for&arded by theIndian "o#ernment to the call for nominations to the Committee on the 4i)hts ofPersons &ith Disabilities!In the year $2'$ the candidature of Dr! Sudha Qaul &as put forth as a member! Dr!Qaul is the Lice Chairperson of the Indian Institute of Cerebral Palsy in QolHata,India, and founder of its Centre for Special Education! She &as also the

chairperson of the Committee constituted by the "o#ernment of India to draft aC4PD compliant le)islation! %o&e#er, her candidature &as &ithdra&nsubsequently'1!In the $2'( elections a)ain, the Indian "o#ernment did not for&ard any names!It has not been established as to &hether any memberBor)ani*ation representin)persons &ith disabilities has lobbied for the nomination of a particular person tothe Committee!

'' Section 1( $. f. 4i)hts of Persons &ith Disabilities ill, $2'('$ Section :2 $. f. 4i)hts of Persons &ith Disabilities ill, $2'('3 Section 1( $. d. and Section :2 $. d., 4i)hts of Persons &ith Disabilities ill, $2'('( Section :3 '. e. 4i)hts of Persons &ith Disabilities ill, $2'('/ See pa)e 1 of the present document!'1 httpBB&&&!ohchr!or)BENB%4odiesBC4PDBPa)esBElections$2'$!asp=


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B. Please identify the main challenges faced by the diversity of personswith disabilities in participating in mainstream and disability$speci(cdecision$making processes at the national, regional and local levels,including challenges faced by persons who e"perience multiplediscrimination )e.g., on the basis of disability, age, gender, ethnic origin,

geographical location-.

'! 6r)anisations of persons &ith disabilities are not bein) called to be a part ofthe decisionmaHin) processes e#en on disability speci


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accessible hard copies, and hence the most mar)inali*ed )roups &ho ha#esuch requirements tend to )et e=cluded!

'2! 7hile other representati#e )roups ha#e the bene


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6. Please provide information on the e"istence of organizations ofpersons with disabilities in your country, including organizations ofchildren and women with disabilities, as well as their composition andinternal decision$making processes and procedures

+here are speci


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E=ceptin) t&o or)anisations, parents associations represent persons &ithde#elopmental disabilities!

As far as children &ith disabilities are concerned, there are no ad#ocacy )roups ofchildren &ith disabilities! +here is a lacH of childrens committees, parliament etc!for children &ith disabilities! +he concerns are ma;orly raised by or)anisations

&orHin) for children &ith disabilities!


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5. Please identify the main challenges faced by the diversity of personswith disabilities as members of mainstream or disability$speci(c non$governmental organizations, and in participating in the activities of suchorganizations, including challenges faced by persons who e"periencemultiple discrimination.

Persons &ith disabilities &orHin) in disability speci


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!nne"ure !C 3ethodologies

D1C Sur#ey of all le)islation related to re)istration of le)al entities, of corporateresponsibility, ta=ation! Also the four disability speci


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Tuestions for 6r)anisations of and for persons &ith disabilities

'! 7hat eorts are taHen by your or)anisation to facilitate participation ofpersons &ith disabilities B their representati#e or)anisations in the decisionmaHin) processes!

$! Do you en)a)e in capacity buildin) of persons &ith disabilities Brepresentati#e or)anisations

3! 7hat are the areas of trainin)

(! Does your trainin) facilitate disabled people and their representati#eor)anisations participate in the National B State le#el B local decisionmaHin) processes

/! %o& do you thinH the trainin) facilitates full and eecti#e participation

1! %o& often do you conduct capacity buildin) pro)rammes that facilitateparticipation in decisionmaHin) processes of "o#ernment such asKe)islati#e, policy and other processes

:! %o& many persons &ith disabilities you ha#e reached so far

-! %o& often you encoura)e persons &ith disabilities participate in thecapacity buildin) processes of other or)anisations

0! Does your or)anisation participate in the decisionmaHin) processes of the"o#ernment And at &hat le#el

'2! %o& do you reach out to disabled people or their representati#eor)anisations to taHe part in these capacity buildin) pro)rammes

Ci#il Society or)anisations participated in the inter#ie&

'! apu +rust ,Pune, 8aharashtra

$! S84C, hubnesh&ar

3! %umanity 7elfare 6r)anisation, Jammu R Qashmir

(! +A4A+DACS, +amil Nadu

D/ +he


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$! 8a)es&ari, SF77D

3! har)a#i Da#ar, apu +rust

(! Amba SalelHar, formerly &ith the Inclusi#e Planet Center for Disability Ka&and Policy

/! 4a;i#e 4aturi, formerly &ith the %uman 4i)hts Ka& Net&orH!

1! Pa#an 8untha, S&adhiHaar

D6C 4esponses &ere )athered by &ay of inter#ie&s &ith the representati#es ofdierent National and +amil Nadu le#el or)anisations

'! apu +rust, Pune, 8aharashtra

$! S84C,hu#anes&ar

3! +N%FC+, +amil Nadu

(! +A4+DACS, +amil Nadu

/! SF4AD7, +amil Nadu

1! December 3rd 8o#ement, +amil Nadu

:! National Platform for the 4i)hts of Disabled

-! All India Confederation of the lind, Chennai

0! National Federation of the lind, Chennai!

'2! EHtha, Chennai!

D5. Information is )athered throu)h telephonic con#ersations &ith persons &ithdisabilities!

'! Smitha Sadasi#an, Lidya Sa)ar

$! PrabhaHaran, Lidya Sa)ar

3! 8a)es&ari, SF77D

(! 4a;i#e 4aturi, formerly &ith the %uman 4i)hts Ka& Net&orH!

/! Pa#an 8untha, S&adhiHaar

Documents

EQUALS Submission on Participation in Decision Making