Discussion paper. What is this discussion paper and questionnaire for?

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1 The UN CRPD: Rles and respnsibilities f deaf peple s representative rganisatins and specialist deaf service prviders in meeting its requirements Discussin paper What is this discussin paper and questinnaire fr? The United Natins Cnventin n the Rights f Persns with Disabilities (UN CRPD) talks abut disabled peple s rights such as access, inclusin and self-determinatin. Deaf Australia is cncerned abut claims made by varius rganisatins / persns that they represent deaf peple when they have n clear mandate t d this. Many f these rganisatins have vested interests and ften have their rles blurred when they advcate n behalf f r represent deaf peple. Deaf Australia wants t find ut what the cmmunity thinks abut the rles and respnsibilities f rganisatns like Deaf Australia, Deaf Scieties, NABS, ACE, Deafness Frum, etc under the UN CRPD. We will use this infrmatin t write a plicy advice paper fr the Department f Families, Husing, Cmmunity Services and Indigenus Affairs (FaHCSIA). This paper is rganised under the fllwing headings: What is Deaf Australia? What des the UN Cnventin n the Rights f Persns with Disabilities say? Histrical verview f deaf representatin and service prvisin in Australia. Specialist deaf service prviders. Representative rganisatins / disabled peple s rganisatins (DPOs). Hw d we knw if an rganisatin is a DPO, a service prvider r smething else? Representatin and advcacy. Abut the questinnaire. There is a separate questinnaire fr yu t fill in and return t us, either n paper, r electrnically r n-line. There is als an easy English summary f this discussin paper. Deaf Australia will have sme cmmunity cnsultatin wrkshps in February and March We have sent/will send infrmatin abut them t members and supprters. Please keep an eye n ur website fr infrmatin als. What is Deaf Australia? Deaf Australia is the nly Australian peak bdy managed by deaf peple representing deaf peple and their cmmunities. We wrk with Australian gvernments and cllabrate with key stakehlders t ensure that Australia cmplies with the United Natins Cnventin n the Rights f Persns with Disabilities. February 2011 Page 1 f 10

2 Deaf Australia (established in 1986) is the Australian natinal member f the Wrld Federatin f the Deaf, is a funding member f Australian Federatin f Disability Organisatins (AFDO) and Australian Cmmunicatin Cnsumers Actin Netwrk (ACCAN), and wrks cperatively with many rganisatins t achieve a better quality f life fr deaf peple. Deaf Australia sits n varius advisry and reference grups (eg, Telstra Disability Frum, Accessible Cinema Advisry Grup, NABS Reference Grup etc) and representatives t these grups have been apprved by Deaf Australia s Bard. Fr mre infrmatin abut Deaf Australia g t What des the UN Cnventin n the Rights f Persns with Disabilities say? The UN CRPD says what shuld happen s that the human rights f peple with disabilities are respected. It talks abut a wide range f issues such as equality, accessibility, access t justice, freedm frm abuse, privacy, educatin, health etc. The UN CRPD als talks abut representatin and Disabled Peple s Organisatins (DPOs). The relevant sectins are: Premable (n) Recgnizing the imprtance fr persns with disabilities f their individual autnmy and independence, including the freedm t make their wn chices. () Cnsidering that persns with disabilities shuld have the pprtunity t be actively invlved in decisin-making prcesses abut plicies and prgrammes, including thse directly cncerning them. Article 4 General bligatins 3. In the develpment and implementatin f legislatin and plicies..cncerning issues relating t persns with disabilities, [gvernments] shall clsely cnsult with and actively invlve persns with disabilities, including children with disabilities, thrugh their representative rganizatins. Article 29 Participatin in plitical and public life [Gvernments] shall: b... encurage participatin [by persns with disabilities] in public affairs including: ii. Frming and jining rganizatins f persns with disabilities t represent persns with disabilities at internatinal, natinal, reginal and lcal levels. The Australian Gvernment ratified the UN CRPD n 17 th July Histrical verview f deaf representatin and service prvisin in Australia putting tday s situatin in cntext Befre Deaf Australia was established in 1986, there was n natinal peak bdy f deaf peple representing deaf peple since the 1930s. There was the Australian Deafness Cuncil but this was an rganisatin mainly f service prviders with sme Deaf and hard f hearing peple (which has nw becme Deafness Frum). In the 1930s Deaf peple set up their wn natinal representative rganisatin (the Australian Assciatin fr the Advancement f the Deaf) but this rganisatin did nt last lng largely because f pressures frm and activities by Deaf Scieties, which included the Deaf Scieties setting up an ppsing natinal rganisatin (the Natinal Cuncil f the Deaf). Infrmatin abut what happened is cntained in Breda Carty s 2004 PhD thesis, Managing their wn affairs: the Australian Deaf cmmunity during the 1920s and 1930s. In each Australian state a Deaf Sciety was established in the late 19 th r early 20 th Century. Mst were established by Deaf peple, but since the very early days they have always been run mstly February 2011 Page 2 f 10

3 by hearing peple. Mst have always had deaf peple n their staff and their bard but have never been led r managed by deaf peple, and nly ne currently has a Deaf CEO. Fr a lng time Deaf Scieties prvided all things fr Deaf peple. They prvided welfare/ cmmunity services, interpreting, accmmdatin supprt, nursing hmes, a Deaf club, church services and s n, and they represented Deaf peple s interests t gvernment, plicy makers and the mainstream cmmunity. Deaf peple went t the Deaf Sciety fr all their needs and the Deaf Sciety lked after them. The rles and activities f Deaf Scieties began t change significantly in the 1980s. The rles f welfare wrkers and interpreters were separated. Nw peple wrk as either a welfare/cmmunity wrker r an interpreter, nt bth. This change happened because it was cnsidered inapprpriate fr the same persn t d bth jbs and Auslan interpreting was emerging as a prfessin in it wn right with interpreters btaining NAATI accreditatin. Church services began t be prvided separately frm the Deaf Sciety. Suth Australia is nw the nly state that still has church services fr deaf peple at the Deaf Sciety, but these services are nt run by the Deaf Sciety. Varius mainstream churches nw make their services accessible. Deaf Scieties clsed their nursing hmes, hstels and grup huses. Deaf peple wh need aged care and accmmdatin nw mstly get this service frm mainstream service prviders and Deaf Sciety staff visit them there. Deaf Australia was established in 1986 by deaf peple t represent deaf peple. It is a DPO, lead and managed by deaf peple, and receives gvernment funding as a natinal peak rganisatin representing deaf peple. Only Suth Australia and Western Australia still have a deaf club space in their buildings. These clubs are perated by deaf vlunteers, nt by the Deaf Sciety. In sme cities and twns deaf peple nw rganise deaf clubs at ther lcatins e.g. Club Burwd in Sydney, Mt Gravatt shwgrunds in Brisbane. In the 1990 s gvernments began t fund ther rganisatins t prvide services fr deaf peple e.g. Australian Cmmunicatin Exchange is funded t prvide the Natinal Relay Service; Wesley Missin Brisbane is funded t prvide NABS. Interpreting services are nw als ffered by private businesses (e.g., Auslan Services) and mainstream interpreting services (e.g. On Call). The general trend in the disability sectr nw is fr peple with disabilities t be as independent as pssible, t make their wn decisins, and t have chices. There is nw als discussin abut hw services are funded. Traditinally, funding has been given t service prviders, wh then decide what services deaf peple can have, wh can have it, hw much they can have etc. There is pressure nw t change that and give cntrl f a deaf persn s share f funding t the deaf persn, wh then decides fr themself which services they want t buy with their funding and wh they want t buy it frm. This is already happening with sme things, e.g., the Emplyment Assistance Fund (EAF). With the EAF, ne f the things a Deaf persn can buy is up t $6,000 per year wrth f interpreting when they need it fr wrk. They can tell their emplyer which interpreter they want and which interpreting agency they want t use t bk the interpreter, their emplyer bks and pays fr the interpreting and then claims reimbursement frm the EAF. In 2010 the Australian Prductivity Cmmissin began investigating the ptins fr prviding lng term care and supprt fr peple with disabilities, including the pssibility f a Natinal Disability Insurance Scheme (NDIS). It is expected t release its reprt in mid February 2011 Page 3 f 10

4 Specialist deaf service prviders Tday here are many different kinds f rganisatins that prvide services fr deaf peple. Mainstream rganisatins prvide services t everyne and sme make their services accessible fr deaf peple. Specialist service prviders prvide services t particular grups f peple. Specialist deaf service prviders exist t prvide services t deaf peple. They are nt necessarily staffed by deaf peple. Specialist deaf service prviders in Australia include (but are nt limited t): Scial / cmmunity services Interpreting services Natinal Relay Service Early interventin and pre-schl services Educatin services Emplyment services Mental health services Hearing services Gvernments prvide at least sme funds t these rganisatins t help them prvide services t deaf peple. These rganisatins als have fundraising activities t raise funds t help them prvide r expand services t deaf peple (and / r t ther clients wh may nt be deaf). There are als sme private businesses that prvide services fr deaf peple n a fee fr service basis (i.e. they d nt get gvernment funding t help them prvide the service) e.g., sme interpreting agencies. Specialist deaf service prviders and ther disability service prviders have a natinal peak rganisatin that represents their interests t gvernment this peak rganisatin is called Natinal Disability Services. Specialist deaf service prviders als have tw ther rganisatins that represent their interests t gvernment Australian Federatin f Deaf Scieties and Deafness Frum. Representative rganisatins / Disabled Peple s Organisatins (DPOs) A representative rganisatin exists t represent the interests f its members. T understand wh is represented, we need t lk at the members wh are they? Organisatins that represent the interests f peple with sme kind f disability are nw being called Disabled Peple s Organisatins (DPOs). A gd explanatin f what is a Disabled Peple s Organisatin is cntained in the article The Rle f Organizatins f Disabled Peple: a Disabled Peple s Internatinal discussin paper by Henry Enns ( Accrding t this paper: Disabled peple s rganizatins are thse cntrlled by a majrity (51%) at the bard and membership levels. (ur emphasis) The rle f these rganizatins includes prviding a vice f their wn, identifying needs, expressing views n pririties, evaluating services and advcating change and public awareness. As a vehicle f self develpment, these rganizatins prvide the pprtunity t develp skills in the negtiatin prcess, rganizatinal abilities, mutual supprt, infrmatin February 2011 Page 4 f 10

5 sharing and ften vcatinal skills and pprtunities. The paper als declares that: Disabled Peple s Internatinal (DPI) cnsiders the rle f rganizatins f disabled peple t be the mst fundamental issue fr the disabled persn s mvement. Hw d we knw if an rganisatin is a DPO, a service prvider r smething else? Smetimes an rganisatin s rle is very clear and easy t identify. Sme examples: 1. Deaf Australia and its state branches Deaf Australia and its state branches are DPOs. They are whlly led and managed by the peple they represent deaf peple. Peple wh are nt deaf are welcme t jin Deaf Australia but they cannt vte and cannt hld psitins n the bard. Deaf Australia s bard is 100% deaf peple, and its vting membership is als 100% deaf peple. At 30 June 2010 Deaf Australia had 325 rdinary individual members (deaf can vte), 134 assciate individual members (nt deaf cannt vte), 0 rdinary rganisatin members (51% Deaf bard and members can vte), and 6 assciate rganisatin members (less than 51% Deaf bard and members cannt vte). Deaf Australia als has registered supprters peple wh supprt ur wrk and wish t receive infrmatin but d nt want t pay membership fees. At 30 June 2010, there were 138 registered supprters, f whm 104 were Deaf, 2 were hard f hearing, 26 were hearing, 4 were parents and 2 were rganisatins. Supprters cannt vte. Deaf Australia receives gvernment funding as a natinal peak rganisatin representing Deaf peple. 2. Better Hearing Australia. Better Hearing Australia is a DPO. It is led and managed by the peple it represents hard f hearing peple. Hwever, Better Hearing Australia des nt receive gvernment funding as a natinal peak bdy. Better Hearing Australia prvides sme services t hard f hearing peple as well as being a DPO. 3. NABS NABS prvides interpreting services fr deaf peple fr private health appintments and is managed by a mainstream nt fr prfit rganisatin, Wesley Missin Brisbane which prvides services t a whle range f peple, nt just disabled peple. Mst peple wuld knw that NABS is nt a DPO and des nt represent deaf peple. 4. ASLIA (Australian Sign Language Interpreters Assciatin) ASLIA is a representative rganisatin fr interpreters. It represents the interests f Auslan interpreters. Sme deaf peple wrk as deaf relay interpreters and are members f ASLIA, but ASLIA represents their interests as relay interpreters. 5. CODA Australia CODA Australia is an rganisatin f CODAs hearing Children f Deaf Adults. Being a CODA is nt a disability, s CODA Australia is a representative rganisatin but is nt a DPO. Hwever, smetimes an rganisatin s rle is nt s clear. As well as Deaf Australia, there are many individuals and rganisatins that at sme time r ther either claim t represent deaf peple, r their rles can be cnfusing fr sme peple. These rganisatins include: February 2011 Page 5 f 10

6 Australian Federatin f Deaf Scieties Deaf Scieties / Deaf Services Deaf Children Australia Deafness Frum Here are sme examples f the structure that sme rganisatins have. The names f these rganisatins are nt included the purpse f including each diagram is t help yu think abut whether an rganisatin with this structure is a deaf DPO r nt. Remember, t be a Disabled Peple s Organisatin (DPO deaf) an rganisatin needs t have a majrity (51%) f deaf peple n its bard AND its vting membership. Organisatin A: Organisatin B: February 2011 Page 6 f 10

7 Organisatin C: T help us wrk ut whether an rganisatin is a DPO (fr deaf peple) r nt, we need t lk at: Wh are their members and wh can vte? Are deaf peple the majrity vting members? Wh is n their bard? Des the bard have a majrity f deaf peple? Their purpse / what is the mst imprtant thing they d. What kind f rganisatin are thse listed belw? 1. Australian Federatin f Deaf Scieties Wh are their members and wh can vte? Are deaf peple the majrity vting members? Members are the six state Deaf Scieties / Deaf Services. All members vte. Wh is n their bard? Des the bard have a majrity f deaf peple? Infrmatin is nt available n the website, but Deaf Australia understands that they have regular members meetings and members CEO s and Chairpersns make the decisins. Based n ur knwledge, ne member has a Deaf CEO, the ther 5 have hearing CEOs. Three members have a Deaf Chairpersn and 3 have a hearing Chairpersn. Their purpse / what is the mst imprtant thing they d Established in 1966 t meet the needs f rganisatins prviding services t the Australian Deaf cmmunity. Their missin is t imprve services fr all Deaf and hard f hearing peple thrugh cperatin and cllabratin f member rganisatins. See fr infrmatin. 2. Deaf Scieties / Deaf Services Wh are their members and wh can vte? Are deaf peple the majrity vting members? Fr mst, membership is pen t anyne. All members can vte. Infrmatin abut hw many members are deaf and hw many are hearing is nt readily available but Deaf Australia believes they d nt have a 51% majrity f deaf members. Suth Australia is different. The Deaf Sciety (currently knwn as DeafCanD) and CanD4Kids integrated t frm CanD Grup Charities under the auspice f Twnsend Huse Incrprated in DeafCanD des nt have members. There are n deaf peple n the Twnsend Huse bard and there is n infrmatin abut whether r nt Twnsend Huse has members. February 2011 Page 7 f 10

8 Wh is n their bard? Des the bard have a majrity f deaf peple? All except SA have a mixture f deaf and hearing bard members. It is nt always clear wh is deaf and wh is hearing. Smetimes ne r mre has a 51% majrity f deaf bard members but this seems t change frm time t time, the Deaf Sciety f NSW appears t be the nly ne that currently has a majrity f deaf bard members. Their purpse / what is the mst imprtant thing they d Prvide services fr deaf peple. See Deaf Scieties / Deaf Services websites: and 3. Deaf Children Australia Wh are their members and wh can vte? Are deaf peple the majrity f vting members? Membership is pen t anyne. All members can vte. Infrmatin abut hw many members are deaf and hw many are hearing is nt readily available but Deaf Australia believes they d nt have 51% majrity f deaf members. Wh is n their bard? Des the bard have a majrity f deaf peple? A mixture f deaf and hearing peple, with a majrity f hearing peple. Their purpse / what is the mst imprtant thing they d Prvide services fr families that have deaf children. Fr infrmatin: 4. Deafness Frum Wh are their members and wh can vte? Are deaf peple the majrity f vting members? Deafness Frum membership is made up f cnsumers (individuals), cnsumer assciatins (rganisatins), service prviders (individuals) and service prvider assciatins (rganisatins). All members can vte. Cnsumers and cnsumer rganisatins include Deaf peple, hard f hearing peple, peple with ear disrders, and deaf/blind peple. Parents f deaf children are als members, but it is nt clear whether they are cnsidered t be cnsumers r service prviders r neither. At 26 May 2010 Deafness Frum had 161 individual members but des nt say hw many f these individual members are Deaf, hard f hearing, deaf/blind, parents, peple with ear disrders r service prviders. It als has 68 rganisatin members and lists these rganisatins. Deaf Australia is familiar with the rganisatins listed and believes that ver 60% f these rganisatin members are service prviders. Wh is n their bard? Des the bard have a majrity f deaf peple? The Deafness Frum bard has a mixture f cnsumers and service prviders. There are currently 10 bard members, f whm 6 appear t be cnsumers, and 4 are either a service February 2011 Page 8 f 10

9 prvider r a parent. Of the 6 cnsumers, it appears that 1 is Deaf, 4 are hard f hearing and 1 has an ear disrder. Their purpse / what is the mst imprtant thing they d Deafness Frum receives funding frm gvernment as a natinal peak bdy representing Deaf peple, hard f hearing peple, peple with ear disrders, deaf/blind, parents and service prviders. Fr infrmatin: The key difference between a DPO and a service prvider is that a DPO has a majrity f disabled/deaf peple in its membership and n its bard it is led and managed by the peple it represents; service prviders are nt necessarily led r managed by the peple they prvide services fr, and they d nt necessarily have disabled/deaf peple as members. Representatin and advcacy Representatin means t say smething n behalf f yurself r ther peple. Advcacy means t lbby fr yu and yur rights r needs. It is abut helping yu t get what yu need. It can happen in different ways and there are different types f advcacy. The tw mst cmmn fr deaf peple are: Individual Advcacy: The fcus is n helping ne persn, e.g.: 1. A persn is treated unfairly at wrk. An advcate can help them make a cmplaint and negtiate smething mre fair with their emplyer. 2. A persn needs a particular type f accmmdatin. An advcate helps them understand what chices are available and helps them negtiate with accmmdatin prviders. Systemic Advcacy: The fcus is n imprving smething that will benefit deaf peple as a grup, e.g.: 1. Wrking t cnvince gvernment, televisin, cinemas etc t imprve captining n TV, at the cinema, n DVDs and n the Internet. 2. Advcating (lbbying) fr a Vide Relay Service that will benefit all Deaf peple. Representatin and advcacy are very clsely linked. Fr example: 1. when a deaf persn has a meeting with a service prvider (e.g., an emplyment service) abut what service they need fr themself, they are representing themself and advcating fr their wn interests; 2. when Deaf Australia s President r Executive Officer has a meeting with a service prvider r gvernment t talk abut deaf peple s need fr a particular service, they are representing the February 2011 Page 9 f 10

10 members f Deaf Australia and advcating fr deaf peple s interests; 3. when a deaf service prvider has a meeting with gvernment and talks abut what they need (e.g., mney) that will help them prvide a service t deaf peple, they are representing their wn needs as a service prvider and advcating fr themself; 4. when a deaf service prvider has a meeting with gvernment and talks abut the needs r wishes f deaf peple fr a particular service, it is nt clear whether they are representing and advcating fr the interests f deaf peple, r fr their wn interests as a service prvider. Abut the questinnaire A questinnaire abut the rles and respnsibilities f specialist deaf service prviders and DPOs accmpanies this discussin paper. Basically the UN CRPD says that deaf peple shuld have the right t represent themselves. It als says that gvernments shuld make sure that deaf peple receive the services and supprts they need s that they have equal access and are fully included in sciety. Gvernments can d that in varius ways, e.g., by prviding funding t rganisatins t prvide services that help deaf peple have access. Deaf Australia wants t find ut what yu think. T help us tell the gvernment what yu think, please fill ut the questinnaire n line at If yu can t fill ut the questinnaire n line, please fill it ut n paper r electrnically and send it t: Karen Llyd Deaf Australia PO Bx 1083 Staffrd Qld [email protected] Fax: By Friday 11 th March 2011 February 2011 Page 10 f 10