ساختار توانبخشی در ايران و جهان

در توانبخشی در ساختار توانبخشی ساختارجهان و جهان ايران و ايرانکمالی محمد کمالی دکتر محمد دکتر

، توانبخشی علوم دانشکده ، استاديار توانبخشی علوم دانشکده استاديارايران پزشکی علوم ايران دانشگاه پزشکی علوم دانشگاه

8282اسفند اسفند

““Would you tell me, please, which Would you tell me, please, which way I ought to go from here?”way I ought to go from here?”

“That depends a good deal on where “That depends a good deal on where you want to go,” said the Cheshire you want to go,” said the Cheshire

cat.cat.

“I don’t much care where,” said “I don’t much care where,” said Alice.Alice.

“Then it doesn’t much matter which “Then it doesn’t much matter which way you go,” said the cat.way you go,” said the cat.

Lewis Carroll'sLewis Carroll's Alice in Wonderland Alice in Wonderland

RehabilitationRehabilitation

Rehabilitate …to restore not to Rehabilitate …to restore not to createcreate

““reinstatement” “return to normal” reinstatement” “return to normal” “redevelopment” “ restoration”“redevelopment” “ restoration”

RehabilitationRehabilitation

Rehabilitation has three overlapping Rehabilitation has three overlapping phasesphases

The pioneering phase- characterized The pioneering phase- characterized by flexibilityby flexibility

The status phase - characterized by The status phase - characterized by rigidity and adherence to rules and rigidity and adherence to rules and regulationsregulations

The expansion phase- characterized The expansion phase- characterized by tolerance(peat,1981)by tolerance(peat,1981)

RehabilitationRehabilitation Rehabilitation is a progressive, dynamic, Rehabilitation is a progressive, dynamic,

goal oriented and often time-limited goal oriented and often time-limited processes which enables an individual with processes which enables an individual with an impairment to identify and reach his or an impairment to identify and reach his or her optimal mental, physical, cognitive, her optimal mental, physical, cognitive, and/or, social functional level. and/or, social functional level. Rehabilitation provides opportunities for Rehabilitation provides opportunities for the individual, the family and the the individual, the family and the community to accommodate a limitation community to accommodate a limitation or loss of function and aims to facilitate or loss of function and aims to facilitate social integration an social integration an independende.OMH,1995)independende.OMH,1995)

How individuals view RehabilitationHow individuals view Rehabilitation

Consumers and their family and Consumers and their family and advocatesadvocates

Health and Social Professionals and Health and Social Professionals and other service providerother service provider

Founders of Rehabilitation ServicesFounders of Rehabilitation Services Designers and Planners of Designers and Planners of

Rehabilitation ServicesRehabilitation Services Regulators of ServicesRegulators of Services

5 Reactions to Persons with 5 Reactions to Persons with DisabilitiesDisabilities

Elimination-Elimination- removing the disabled from removing the disabled from the communitythe community

The “The “poor housepoor house”-removing from view”-removing from view Institutional careInstitutional care - the process leading - the process leading

to the full involvement of disabled persons to the full involvement of disabled persons in the life of their families, communities in the life of their families, communities and society.and society.

Self-actualizationSelf-actualization-the ability of the -the ability of the disabled person to fulfill his or her need for disabled person to fulfill his or her need for living a life in dignified independence with living a life in dignified independence with self-esteemself-esteem

Pre-Historic TimesPre-Historic Times

People with People with Disabilities Disabilities – Seen as unworthySeen as unworthy– Extra mouth to feedExtra mouth to feed– Killed or abandonedKilled or abandoned

Historical PerceptionsHistorical Perceptions

Christianity Spreads Christianity Spreads – Parents blamed Parents blamed – SlavesSlaves

1700’s 1700’s – Poor or alms housesPoor or alms houses– Subhuman organismsSubhuman organisms

History & PerceptionsHistory & Perceptions

Early 1800’s Early 1800’s – Menace to societyMenace to society– Institutionalized & SterilizedInstitutionalized & Sterilized– Schools developedSchools developed

1817/1819 American School for the Deaf or 1817/1819 American School for the Deaf or Connecticut Asylum for the Deaf and DumbConnecticut Asylum for the Deaf and Dumb

1826 Asylum for the Deaf and Dumb in Kentucky1826 Asylum for the Deaf and Dumb in Kentucky 1832 Perkins School for the Blind in Boston1832 Perkins School for the Blind in Boston 1841 Dorothea Dix1841 Dorothea Dix 1841 American School for the Deaf publishes 1841 American School for the Deaf publishes

American AnnalsAmerican Annals 1848 Perkins Institution 1848 Perkins Institution


1850’s 1850’s – Object of PityObject of Pity– Reform and Social AwakeningReform and Social Awakening

1854 New England Gallaudet Association 1854 New England Gallaudet Association of the Deafof the Deaf

1860 Braille Demonstration1860 Braille Demonstration 1864 Columbia Institution for the Deaf 1864 Columbia Institution for the Deaf

and Dumb and Blind confers college and Dumb and Blind confers college degreesdegrees

1883 Eugenics by Sir Francis Galton 1883 Eugenics by Sir Francis Galton – US laws passed to discriminate against US laws passed to discriminate against

people with disabilitiespeople with disabilities– Jim Crow Laws passed in the SouthJim Crow Laws passed in the South


Early 1900’sEarly 1900’s– Medical Model - Diseased OrganismsMedical Model - Diseased Organisms– 1901 National Fraternal Society of Deaf1901 National Fraternal Society of Deaf– 1902 Helen Keller graduates1902 Helen Keller graduates– 1912 The Threat of the Feebleminded is 1912 The Threat of the Feebleminded is

publishedpublished– 1927 US Supreme Court rules forced 1927 US Supreme Court rules forced

sterilization is violation of civil rightssterilization is violation of civil rights– 1930’s WW 1- Eugenics1930’s WW 1- Eugenics– 1933 President Franklin Delano Roosevelt1933 President Franklin Delano Roosevelt– 1935 Social Security Act1935 Social Security Act– 1936 Randolph Sheppard Act1936 Randolph Sheppard Act


1940’s1940’s– Medical Model - Diseased OrganismsMedical Model - Diseased Organisms– 1943 Congress passes Vocational 1943 Congress passes Vocational

Rehabilitation AmendmentsRehabilitation Amendments– 1945 President Truman signs Public Law 1945 President Truman signs Public Law

176176– 1946 Hospital Survey and Construction 1946 Hospital Survey and Construction

ActAct– 1946 The Cerebral Palsy Society 1946 The Cerebral Palsy Society – 1947 President’s Committee on Employ 1947 President’s Committee on Employ

the Physically Handicapped Weekthe Physically Handicapped Week


1950’s1950’s– Fund raising based on stereotype of eternal childFund raising based on stereotype of eternal child– Still have medical model of supportStill have medical model of support– Still lots of shame and blame for parentsStill lots of shame and blame for parents– 1950 Social Security Act Amendments1950 Social Security Act Amendments– 1950 The Association for Retarded Children in 1950 The Association for Retarded Children in

Minneapolis Minneapolis – 1954 Brown vs the Board of Education of Topeka1954 Brown vs the Board of Education of Topeka– 1956 Social Security Act Amended to create SSDI1956 Social Security Act Amended to create SSDI– 1958 SSDI amended to extend benefits to 1958 SSDI amended to extend benefits to

dependents of disabled workersdependents of disabled workers


1960’s1960’s– Fund raising based on stereotype of Fund raising based on stereotype of

eternal childeternal child– Still have medical model of supportStill have medical model of support– Parent Movement ContinuesParent Movement Continues– 1961 President Kennedy appoints 1961 President Kennedy appoints

President’s Panel on Mental President’s Panel on Mental RetardationRetardation

– 1962 Ed Roberts at University of CA 1962 Ed Roberts at University of CA at Berkeleyat Berkeley


1960’s1960’s– 1963 President Kennedy and institutions1963 President Kennedy and institutions– 1964 Civil Rights Act1964 Civil Rights Act– 1965 Medicaid and Medicare in the SS Act 1965 Medicaid and Medicare in the SS Act

AmendmentsAmendments– 1965 Vocational Rehabilitation Act 1965 Vocational Rehabilitation Act

AmendmentsAmendments– 1965 Autism Society of America founded1965 Autism Society of America founded– 1966 President’s Committee on Mental 1966 President’s Committee on Mental

RetardationRetardation– 1966 Christmas in Purgatory published1966 Christmas in Purgatory published– 1968 Architectural Barriers Act passed1968 Architectural Barriers Act passed


1970’s1970’s– Self Advocacy Movement beginsSelf Advocacy Movement begins– 1970 Developmental Disabilities and Facilities 1970 Developmental Disabilities and Facilities

Construction Amendments are passedConstruction Amendments are passed– 1970 Urban Mass Transportation Assistance Act1970 Urban Mass Transportation Assistance Act– 1971 Wayne vs. Stickney1971 Wayne vs. Stickney– 1971 Fair Labor Standard Act of 1938 Amended1971 Fair Labor Standard Act of 1938 Amended– 1972 Center for Independent Living at UC Berkeley1972 Center for Independent Living at UC Berkeley– 1972 SS Act Amended to establish SSI1972 SS Act Amended to establish SSI– 1972 Principle of Normalization1972 Principle of Normalization

Rehabilitation Act of 1973Rehabilitation Act of 1973

Greatest Achievement of Disability Greatest Achievement of Disability Rights MovementRights Movement

Title V Section 504Title V Section 504– Prohibits discrimination against Prohibits discrimination against

otherwise qualified people with otherwise qualified people with disabilities by programs & facilities disabilities by programs & facilities receiving federal funding & the postal receiving federal funding & the postal servicesservices

– Litigation from this act leads to definingLitigation from this act leads to defining Reasonable modificationReasonable modification Reasonable accommodationReasonable accommodation Undue burdenUndue burden


19751975– Education of All Children Act (PL 94-Education of All Children Act (PL 94-

142)142)– The Developmental Disabilities The Developmental Disabilities

Assistance and Bill of Rights ActAssistance and Bill of Rights Act– The Association of Persons with The Association of Persons with

Severe Handicaps (TASH)Severe Handicaps (TASH)– Ed Roberts hired as Director of CA Ed Roberts hired as Director of CA

Dept of RehabilitationDept of Rehabilitation


Late 1970’sLate 1970’s– 1978 ADAPT demonstrations begin 1978 ADAPT demonstrations begin – 1978 The Rehabilitation and 1978 The Rehabilitation and

Developmental Disabilities Developmental Disabilities AmendmentsAmendments

– 1979 The Disability Rights Education 1979 The Disability Rights Education and Defense Fund at Berkeleyand Defense Fund at Berkeley


1980’s1980’s– 1980 Civil Rights of Institutionalized Persons Act1980 Civil Rights of Institutionalized Persons Act– 1980 SS Amendments establishing status 16191980 SS Amendments establishing status 1619– 1981 Baby Doe in Bloomington, IL dies1981 Baby Doe in Bloomington, IL dies– 1984 Voting Accessibility for the Elderly and 1984 Voting Accessibility for the Elderly and

Handicapped ActHandicapped Act– 1986 The Education of the Handicapped Act 1986 The Education of the Handicapped Act

AmendmentsAmendments– 1986 Air Carrier Access Act1986 Air Carrier Access Act– 1988 Fair Housing Act Amendments1988 Fair Housing Act Amendments– 1988 Gallaudet University student demonstrations1988 Gallaudet University student demonstrations– 1988 Technology Related Assistance Act1988 Technology Related Assistance Act

ADAADA

19901990– Greatest Victory of Disability Rights Greatest Victory of Disability Rights

Movement Movement – Comprehensive anti-discrimination Comprehensive anti-discrimination

legislationlegislation– Americans with Disabilities Act prevents Americans with Disabilities Act prevents

discrimination against people with discrimination against people with disabilities in:disabilities in:

EmploymentEmployment Access to public servicesAccess to public services TransportationTransportation Public accommodationsPublic accommodations TelecommunicationsTelecommunications

IDEA Amendments 1992IDEA Amendments 1992

Individuals with Disabilities Education ActIndividuals with Disabilities Education Act– Transition is a coordinated set of activities for a student with a Transition is a coordinated set of activities for a student with a

disability that:disability that: Is outcome oriented promoting post school options: post-Is outcome oriented promoting post school options: post-

secondary education, vocational training, employment, secondary education, vocational training, employment, adult education, adult services, independent living, or adult education, adult services, independent living, or community participationcommunity participation

Is based upon individuals needs and preferencesIs based upon individuals needs and preferences Includes instruction and community experiences leading to Includes instruction and community experiences leading to

employment or other adult living objectivesemployment or other adult living objectives Beginning at age 14 and updated annually, a statement of Beginning at age 14 and updated annually, a statement of

transition service needs that focuses on course of studytransition service needs that focuses on course of study Beginning at age 16 a statement of needed transition Beginning at age 16 a statement of needed transition

services and interagency responsibilityservices and interagency responsibility


1990’s1990’s– 1992 Rehabilitation Act Amendments1992 Rehabilitation Act Amendments– 1993 Facilitated Communication1993 Facilitated Communication– 1993 Robert Williams becomes 1993 Robert Williams becomes

Commissioner of Administration on Commissioner of Administration on Developmental DisabilitiesDevelopmental Disabilities

– 1994 Tech Act reauthorized1994 Tech Act reauthorized– 1995 Helen L. vs. Snider1995 Helen L. vs. Snider– 1995 Sandra Jenson1995 Sandra Jenson– 1996 The Developmental Disabilities 1996 The Developmental Disabilities

Assistance and Bill of Rights Act Assistance and Bill of Rights Act AmendmentsAmendments

Policy history: pre-20th centuryPolicy history: pre-20th century

Developments in disability policy in UK Developments in disability policy in UK during 20th centuryduring 20th century

– Industrial revolutionIndustrial revolution

- disabled people became a ‘problem’- disabled people became a ‘problem’

Poor Law Amendment Act - workhouses Poor Law Amendment Act - workhouses administrative model of disabilityadministrative model of disability

Growth of institutionsGrowth of institutions

institutions: from philanthropic to institutions: from philanthropic to controlling controlling

– Mental Deficiency Act 1913Mental Deficiency Act 1913

– Eugenics movementEugenics movement

Welfare stateWelfare state

1948:Creation of NHS -- medicalised 1948:Creation of NHS -- medicalised learning disabilitylearning disability

conditions in hospitals declinedconditions in hospitals declined people suffered physical and people suffered physical and

emotional abuseemotional abuse pressure to move people into pressure to move people into

communitycommunity

Welfare policy 1970s & ‘80sWelfare policy 1970s & ‘80s

1970 Chronically Sick and Disabled 1970 Chronically Sick and Disabled Persons’ Act (1972 Scotland)Persons’ Act (1972 Scotland)

1986 Disabled Persons (Services, 1986 Disabled Persons (Services, Consultation and Representation) Act Consultation and Representation) Act

NHS and Community Care Act NHS and Community Care Act 19901990

1990 NHS and Community Care Act 1990 NHS and Community Care Act

growth in ‘community’ servicesgrowth in ‘community’ services

Community Care (Direct Payments) Community Care (Direct Payments) Act 1995Act 1995

Employment PolicyEmployment Policy1944-1990s1944-1990s

1944: Disabled Persons 1944: Disabled Persons (Employment) Act(Employment) Act

Disablement Resettlement ServiceDisablement Resettlement Service Sheltered workshops Sheltered workshops Disability Service TeamsDisability Service Teams Supported Employment ProgrammeSupported Employment Programme Access to WorkAccess to Work New DealNew Deal

Disability Discrimination Act Disability Discrimination Act 19951995

The right to challenge unjustified The right to challenge unjustified discriminationdiscrimination

at workat work in provision of goods and servicesin provision of goods and services in buying/renting land & propertyin buying/renting land & property Now also - in educationNow also - in education transporttransport

Disability Rights CommissionDisability Rights Commission

Models of disability - M. OliverModels of disability - M. Oliver

Individual model of disability - Individual model of disability - ‘personal tragedy’‘personal tragedy’

(medical model ?)(medical model ?) Social model of disability - created by Social model of disability - created by

disabled themselvesdisabled themselves

Models of disabilityModels of disability

Moral ModelMoral Model Medical ModelMedical Model Environmental ModelEnvironmental Model Civil Rights/Minority ModelCivil Rights/Minority Model– Legal FoundationsLegal Foundations

FACTORSFACTORS

Population changesPopulation changesChanges in disease Changes in disease patternspatterns

Environmental factorsEnvironmental factorsEconomic outlookEconomic outlook

Medical model of disabilityMedical model of disability

Focuses on impairmentFocuses on impairment pathologies individualpathologies individual professionals seen as expertsprofessionals seen as experts looks for cure / treatmentlooks for cure / treatment

Social modelSocial model

““The disadvantage or restriction of The disadvantage or restriction of activity caused by a contemporary activity caused by a contemporary social organisation which takes little social organisation which takes little or no account of people who have or no account of people who have physical impairments and thus physical impairments and thus excludes them from the mainstream excludes them from the mainstream of social activities” of social activities”

- UPIAS 1976- UPIAS 1976

Concepts of DisabilityConcepts of Disability

Social model vs medical modelSocial model vs medical model Disabling environment or personal Disabling environment or personal

deficitdeficit

““Disability is not something individuals Disability is not something individuals have. What individuals have are have. What individuals have are impairments” impairments” – ––New Zealand Disability Strategy (2001)New Zealand Disability Strategy (2001)

““We must create a world in which We must create a world in which disability is:”disability is:”– understood & accepted as a normal part understood & accepted as a normal part

of the human experienceof the human experience– not a lifelong experience of loss & not a lifelong experience of loss &

sadnesssadness– life that is interesting, exciting, life that is interesting, exciting,

challenging ,joyouschallenging ,joyous– in a society that is inclusivein a society that is inclusive– able to avoid unnecessary & unwanted able to avoid unnecessary & unwanted

economic dependence economic dependence (NIDRR, 1993)(NIDRR, 1993)

Concepts of DisabilityConcepts of Disability

Needs or rights-based policies?Needs or rights-based policies?

Needs-led policies since ‘40sNeeds-led policies since ‘40s medical modelmedical model classification and assessment classification and assessment help at individual levelhelp at individual level

Some shift to rights-based recentlySome shift to rights-based recently institutional discrimination = ‘the problem’institutional discrimination = ‘the problem’ equal rights and citizenshipequal rights and citizenship changing environments (not the person)changing environments (not the person)

VISIONVISION

Human and civil rights fully protectedHuman and civil rights fully protected Public services to meet personal Public services to meet personal

needsneeds Access to the same opportunities as Access to the same opportunities as

non-disabled people havenon-disabled people have Full participation in family and Full participation in family and

community lifecommunity life Income to ensure a life in dignityIncome to ensure a life in dignity

Institutional Based RehabilitationInstitutional Based Rehabilitation

Designed and controlled by Designed and controlled by professional groupsprofessional groups

Delivered by professionalsDelivered by professionals CentralizedCentralized Referral basedReferral based SpecializedSpecialized Resources and technology intensiveResources and technology intensive

General principles of CBRGeneral principles of CBR

Community and client centeredCommunity and client centered Focused on prevention and early Focused on prevention and early

interventionintervention Collaborators with institutional Collaborators with institutional

facilitiesfacilities Promoters of consumer participation Promoters of consumer participation

and controland control Consistent and flexibleConsistent and flexible Coordinate by referral systemCoordinate by referral system

General principles of CBRGeneral principles of CBR

Interdisciplinary and multisectoralInterdisciplinary and multisectoral Focused on information sharing Focused on information sharing Providers of appropriate knowledge Providers of appropriate knowledge

to the communityto the community Agents for selecting appropriate Agents for selecting appropriate

technology to fit community needtechnology to fit community need Providers of full- or part- time Providers of full- or part- time

professional or non-professional professional or non-professional teamsteams

Acute care and specialist facility IBR Acute care and specialist facility IBR

Outreach ServicesOutreach Services

Home care programHome care program

Social servicesSocial services

Community workersCommunity workers

VolunteersVolunteers

Family/caregiverFamily/caregiver

Person with disability CBRPerson with disability CBR

ساختار توانبخشی در ايران و جهان

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