Overview of Some Adult Disability Services for People with Autism

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1 Schl f Health Prfessins University f Missuri Disability Plicy and Studies 98 Crprate Lake Drive Clumbia, MO PHONE (573) FAX (573) 882= Overview f Sme Adult Disability Services fr Peple with Autism Dr. Sctt Standifer MU Disability Plicy & Studies There is grwing anecdtal evidence f a lack f awareness within the autism cmmunity f valuable adult services (including vcatinal rehabilitatin) available t peple n the spectrum. Amng thse wh d knw abut these services, there is als evidence f sme misinfrmatin and skepticism. This reprt will briefly review tw key netwrks f adult supprts vcatinal rehabilitatin (VR) and centers fr independent living (CILs). Many f the principles and pririties advanced by AFAA are similar t the principles and pririties f bth f these netwrks. It is als imprtant t nte that, like all service netwrks, these tw netwrks are nt perfect and d nt always achieve their wn ideals, pririties and cmmitment, despite their best effrts. The MU ffice f Disability Plicy & Studies hpes AFAA can prvide assistance and supprt t bth f the netwrks, helping them better achieve their gals fr services t adults with autism. Vcatinal Rehabilitatin Vcatinal rehabilitatin is a natinwide netwrk f state agencies whse gal is t help individuals with physical r mental disabilities achieve career-riented jbs (with cmpetitive pay) and live independently in their cmmunity. These agencies prvide r crdinate supprts including cunseling, medical and psychlgical services, jb caching, higher educatin, jb training, jb placement and ther individualized services anything t help the individual get and maintain emplyment. Research has cnsistently shwn that fr every dllar spent helping peple with disabilities get emplyed and live independently, federal, state, and lcal gvernments get back $7 in taxes and savings n ther disability services. Each state has at least ne state VR agency (sme have separate agencies fr peple with blindness and/r fr Native Americans). Mst cities and twns have at least ne ffice f trained VR cunselrs and staff. Natinally, VR agencies emply mre than 9,000 staff. These ffices, in turn, pay fr cntracted supprt services frm lcal cmmunity rehabilitatin service prviders ("cmmunity partners") t achieve the gal f helping peple with disabilities get jbs.

2 Overview f VR and CILs Page 2 There are at least 8,000 f these cmmunity partners natinwide, emplying an estimated 160,000 staff. Each year the natinal federal/state vc rehab system helps mre than 200,000 peple with disabilities find jbs. This netwrk is verseen by the Rehabilitatin Services Administratin, within the U.S. Department f Educatin, which mnitrs, advises, and partially funds the agencies. The legislative basis fr the VR system is the Rehabilitatin Act f The Rehabilitatin Act stands, with the ADA and Individuals with Disabilities Act (IDEA), as a crnerstne f U.S. federal plicy tward peple with disability. In particular, the Rehabilitatin Act states, in part: "Disability is a natural part f the human experience and in n way diminishes the right f individuals t live independently; enjy self-determinatin; make chices; cntribute t sciety; pursue meaningful careers; and enjy full inclusin and integratin in the ecnmic, plitical, scial, cultural, and educatinal mainstream f American sciety" "The gals f the Natin prperly include the gal f prviding individuals with disabilities with the tls necessary t make infrmed chices and decisins; and achieve equality f pprtunity, full inclusin and integratin in sciety, emplyment, independent living, and ecnmic and scial self-sufficiency, fr such individuals." It is the plicy f RSA and VR that 1) All individuals with disabilities are presumed t be able t wrk, n matter hw significant their disability. It is a matter f having apprpriate supprts. 2) The apprpriate utcme fr a persn with a disability is emplyment in a career-riented jb; matching the persn's interests and abilities, in a cmmunity setting, with nndisabled c-wrkers, and with cmpetitive pay. Anything less is nt cnsidered a successful VR service utcme. An Overview f Hw the Vcatinal Rehabilitatin Prcess Wrks 1. Eligibility. VR services are available t any U.S. citizen with a significant disability wh wants t wrk but finds pprtunities limited because f his r her disability and wh requires VR services t becme emplyed. The diagnsis f a significant disability is determined by a medical prfessinal r psychlgist. A significant disability is ne which impedes activities f daily life and creates emplyment barriers. If the cunselr feels there has been a misdiagnsis r needs further details, he r she can arrange fr further medical evaluatin, paid fr by VR. 2. Vcatinal Cunseling and Guidance. Each persn with a disability ("client") is paired with a vcatinal cunselr. Tgether they identify a career gal fr the persn. RSA regulatins require that this gal be a cmmunity-based jb (preferably Cpyright, Curatrs f the University f Missuri & MU Disability Plicy & Studies, 2010

3 Overview f VR and CILs Page 3 career-riented), jb with a cmpetitive salary, in a setting wrking with peple withut disabilities. The VR system des nt believe that sheltered wrkshps are acceptable emplyment utcmes. Based n the career gal, the cunselr and client select the services the client needs t reach this gal. T determine what services the client needs, the cunselr talks with the client t get an understanding f the client's knwledge, abilities, interests, past experiences, cncerns, and accmmdatin needs. Medical and ther dcumentatin are imprtant, but the key surce f infrmatin is cnversatins with the client and/r client's family. In sme instances, the persn's career gal may change as he r she cnducts "career explratin". This is cnsidered a nrmal part f the vcatinal cunseling prcess. 3. VR Services. Tgether the client and cunselr decide supprts and services the client needs t reach his r her career gal. The specific services a client receives will vary widely, depending n the client's career gal and persnal supprt needs. The chsen services and the career gal make up the Individualized Plan fr Emplyment (IPE). The IPE is nt cmplete until the client signs his r her name t indicate that she r he 1) was an active participant in its creatin and 2) agrees with the services, respnsibilities, and gal listed in the plan. This insures that clients have a central and determining vice in the type f services they receive. In additin, the IPE is a wrking dcument which can be revised later if necessary. Types f VR Services VR services are bradly defined as any gds r services needed t help the client find emplyment. As mentined, services can vary widely depending n individual circumstances, cmmunity resurces, and career preferences. Services can include, but are nt limited t: Assessment Services These assessments fcus n a persn's abilities and supprt needs, nt n barriers, and may include medical, psychiatric, scial r psychlgical evaluatin. This is NOT a qualifying assessment fr services, but a clarifying assessment. This is als NOT a career filtering tl assessment results usually d nt rule ut a particular career chice: they identify and clarify the supprt needs a particular career chice might require. Vcatinal Assessment identifies a client's interests, readiness fr wrk, skills, and lcal jb pprtunities. Ideally, these assessments include an "in cntext" cmmunity-based assessment in additin t (r in place f) a clinical assessments. Cunseling and Guidance This is the nging relatinship between the client and cunselr. As a team they review evaluatin results and develp a realistic emplyment plan. Medical Services. In sme instances, specific medical treatment (such as surgery r cunseling) may increase a persn's career ptential. This is NOT a health care Cpyright, Curatrs f the University f Missuri & MU Disability Plicy & Studies, 2010

4 Overview f VR and CILs Page 4 plan fr nging medical needs, but a fcused interventin t imprve emplyment ptins. Jb Training and Educatin This cvers skill acquisitin, including pstsecndary educatin t imprve emplyment ptential. It can include specific vcatinal training curses, classrm training, and n-the-jb training amng ther things. Other Supprt Services This addresses secndary needs key t jb retentin, including develpment f transprtatin ptins, buying tls r equipment, r supprt fr independent living. Jb Placement These are services t help a client lcate jb pprtunities and becme hired. Jb placement can include specific jb hunting skills (such as interviewing and resume writing), but can als include services frm jb placement specialists wh directly market a client t netwrks f lcal emplyers. Supprted Emplyment including jb caching (see discussin belw) Independent Living Services This includes referral t lcal cmmunity resurces, help with self advcacy, help with mney management, etc. Assistive Technlgy Services. Sme clients need a specific device r piece f equipment t imprve emplyment ptins. Assistive technlgy assessments can identify apprpriate technlgy fr a specific client and VR can ften purchase it fr the client. Further Discussin f VR Services Supprted Emplyment. This is ne f the newer services fr the VR system. Ideally, supprted emplyment (the use f an n-site jb cach t help a client navigate jb tasks and respnsibilities) shuld be a temprary transitinal supprt which can be faded ut. Hwever, there are individuals wh need supprted emplyment n a lng-term semi-permanent basis. Because the gal f VR services is the achievement f emplyment, there must be a cut-ff pint at which the client is determined t be securely emplyed and services are cmplete (usually 90 days after emplyment). FUNDING FOR SUPPORTED EMPLOYMENT SERVICES IS TIME LIMITED and lng term jb supprt must be prvided by anther funding surce. Ideally, the cunselr and client will address this issue during the planning stage and identify ther scial service surces wh can prvide supprted emplyment n a lnger term basis. Hwever, this is nt always successful. This is an nging area f attentin frm RSA and its netwrk f technical assistance prviders fr state agencies. Training and Educatin. Training and educatin are sme f the mst cmmn VR services and deserve further elabratin. There is NO TIME LIMIT n hw lng the training may take, as lng as reasnable prgress is being made tward a client's emplyment gal. Training ptins include: Cpyright, Curatrs f the University f Missuri & MU Disability Plicy & Studies, 2010

5 Overview f VR and CILs Page 5 Shrt-Term Vcatinal Training. Depending n the persn's characteristics (disability features, past experience, etc.) and emplyment gal, this training may last nly a few hurs r ne r tw years. This may include training at a lcal vcatinal technical cllege, r at a lcal specialized disability vcatinal training service. VR frequently cvers the cst f the training and a basic living stipend, including husing csts if any. Cllege Educatin. Sme career gals require a cllege degree. It is up t the client and the cunselr t decide if he r she is willing and able t cmplete the degree and then find emplyment based upn that degree. VR will ften cntribute funding fr the degree, but nly after the client has first applied fr any available financial aid. VR will usually cntribute tward sme r all f tuitin, schl supplies, husing, and basic living csts. The cunselr and client will usually agree in advance n a timeline and curse lad fr the degree. It is nt an pen-ended schlarship, but it is als n a flexible time scale as lng as activities are fcused n the career gal. Self-Emplyment Services. There is a lt f interest within the disability cmmunity in self-emplyment career ptins. There are several subtypes f selfemplyment, including small business wner, cntract wrker, and equipment wnership. VR can prvide help and training with, amng ther things: Feasibility studies and market research Advice frm business and marketing cnsultants Seeking start-up funds frm lcal banks Initial equipment purchase Transitin Services. One f the majr categries f new clients fr VR agencies is yung adults cmpleting their high schl educatin. All VR agencies have extensive utreach effrts fr transitin planning and services. On a natinal level, there are several funded research and assistance centers n vcatinal rehabilitatin and transitin. Centers fr Independent Living Funded under Title VII f the Rehabilitatin Act, the natinal netwrk f CILs includes apprximately 800 cmmunity-based rganizatins prmting independent, cmmunity-based living and wrking fr peple with disabilities. Regulatins mandate that 51% f the staff and bards f directrs f these centers be peple with significant disabilities. IL Centers prvide a wide range f services, depending n the needs f the lcal cmmunity, but regulatins require that, at a minimum, they prvide the cre services f Infrmatin and referral (cnnectins t service prviders and funding resurces in the cmmunity) Cpyright, Curatrs f the University f Missuri & MU Disability Plicy & Studies, 2010

6 Overview f VR and CILs Page 6 Independent living skills training (training t address an individual's challenges with activities f daily living, lcal transprtatin, etc.) Peer cunseling (mentring cnnectins with ther adults living in the cmmunity with similar disabilities) Individual and systems advcacy (awareness training, advcacy fr imprved accessibility, assistance in transitining frm residential facilities t independent living in the cmmunity) The specific additinal services prvided vary frm center t center. Mst centers are als actively invlved in ne r mre f the fllwing activities: cmmunity planning and decisin making schl-based peer cunseling, rle mdeling, and skills training wrking with lcal gvernments and emplyers t pen and facilitate emplyment pprtunities interacting with lcal, state, and federal legislatrs and staging recreatinal events that integrate individuals with disabilities with their nndisabled peers Each state has a Statewide Independent Living Cuncil (SILC prnunced "silk") which crdinates and mnitrs the state's CILs that are funded thrugh RSA r the state. Each year the cuncil develps a State Plan fr Independent Living in cllabratin with the state vcatinal rehabilitatin agency. These plans, alng with perfrmance data, are submitted t RSA annually. In general, the centers fcus n civil rights, the independent living philsphy, and cmmunity inclusin fr peple with significant disabilities. They are an utgrwth f the disability rights and independent living mvement f the 1970s & 1980s (althugh the mvement is still quite active tday!). CILs and SILC are served by a natinal training and technical assistance center, als funded by RSA. The center is the Independent Living Research Utilizatin (ILRU) prgram in Hustn, Texas. On a natinal level, the CILs are represented by a prfessinal rganizatin called the Natinal Cuncil n Independent Living, r "nickel" (NCIL). NCIL states that Centers fr Independent Living: "embdy the values f disability culture and serve as the rganizatinal backbne f grassrts initiatives fr the civil and human rights f peple with disabilities. Centers fr Independent Living vest pwer in peple with disabilities by ensuring they cntrl the services, management and directin f the rganizatin. "Centers fr Independent Living envisin a sciety in which peple with disabilities are valued equally and participate fully. In rder t accmplish this visin, they advcate fr individuals facing discriminatin in emplyment, Cpyright, Curatrs f the University f Missuri & MU Disability Plicy & Studies, 2010

7 Overview f VR and CILs Page 7 educatin, husing, transprtatin, and healthcare t ensure equal pprtunity fr peple with disabilities as citizens f ur demcratic natin. "CILs base their pririties and actins n the belief that peple with disabilities have the right t decide hw t live, wrk, and participate in their cmmunities and that we must rganize fr scial change, s that we may as a sciety d away with the biases that will supprt a cure, but ften nt an accmmdatin that wuld allw us t participate n an equal basis. In practice, creating an rganizatin fr peple with disabilities run by peple with disabilities changes the value system, the implementatin, and the directin f an rganizatin verall. "Ten Principles f Independent Living" Develped by the Statewide Independent Living Cuncil f Illinis Civil Rights - equal rights and pprtunities fr all; n segregatin by disability type r steretype. Cnsumerism - a persn ("cnsumer" r "custmer") using r buying a service r prduct decides what is best fr him/herself. De-institutinalizatin - n persn shuld be institutinalized (frmally by a building, prgram, r family) n the basis f a disability. De-medicalizatin - individuals with disabilities are nt "sick", as prescribed by the assumptins f the medical mdel and d nt require help frm certified medical prfessinals fr daily living. Self-help - peple learn and grw frm discussing their needs, cncerns, and issues with peple wh have had similar experiences; "prfessinals" are nt the surce f help prvided. Advcacy - systemic, systematic, lng-term, and cmmunity-wide change activities are needed t ensure that peple with disabilities benefit frm all that sciety has t ffer. Barrier-remval - in rder fr civil rights, cnsumerism, de-institutinalizatin, demedicalizatin, and self-help t ccur, architectural, cmmunicatin and attitudinal barriers must be remved. Cnsumer cntrl - the rganizatins best suited t supprt and assist individuals with disabilities are gverned, managed, staffed and perated by individuals with disabilities. Peer rle mdels - leadership fr independent living and disability rights is vested in individuals with disabilities (nt parents, service prviders r ther representatives). Crss-disability - activities designed t achieve the first five principles must be crssdisability in apprach, meaning that the wrk t be dne must be carried ut by peple with different types f disabilities fr the benefit f all persns with disabilities. Cpyright, Curatrs f the University f Missuri & MU Disability Plicy & Studies, 2010

8 Overview f VR and CILs Page 8 Further Surces n Centers fr Independent Living ILRU (Independent Living Research Utilizatin ( US Department f Educatin, Office f Special Educatin and Rehabilitative Services (OSERS) ( Natinal Cuncil n Independent Living (NCIL) Dr. Sctt Standifer is a Clinical Instructr in the Disability Plicy & Studies ffice f the University f Missuri's Schl f Health Prfessins. He is the authr f Adult Autism & Emplyment: A Guide fr Vcatinal Rehabilitatin Prfessinals. He is als an rganizer fr the upcming cnference Autism Wrks: a natinal cnference n autism and emplyment (3/3-4/2011). He can be reached at standifers@missuri.edu. Cpyright, Curatrs f the University f Missuri & MU Disability Plicy & Studies, 2010