Serving Patrons with Developmental Disabilities (and the people that care and support them) Anne Dorsey Barrie Public Library, Adult Services Librarian

Serving Patrons with Serving Patrons with Developmental Disabilities (and Developmental Disabilities (and

the people that care and the people that care and support them)support them)

Anne DorseyAnne DorseyBarrie Public Library, Adult Services LibrarianBarrie Public Library, Adult Services Librarian

Sambhavi ChandrashekarSambhavi ChandrashekarUniversity of Toronto, PhD studentUniversity of Toronto, PhD student

February 01, 2007February 01, 2007

All pencil drawings are presented with permission from the artist Martha Perkse

To reach a port we must sail, To reach a port we must sail, sometimes with the wind and sometimes with the wind and sometimes against it. But we sometimes against it. But we

must not drift or lie at must not drift or lie at anchor.anchor.

Oliver Wendell HolmesOliver Wendell Holmes


Purpose of this sessionPurpose of this session

• Recognize people with developmental Recognize people with developmental disabilities as growing integral portion of disabilities as growing integral portion of library userslibrary users

• Acknowledge the efforts of librarians to Acknowledge the efforts of librarians to work with people with developmental work with people with developmental disabilitiesdisabilities

• Develop some skills necessary to serve Develop some skills necessary to serve people with developmental disabilitiespeople with developmental disabilities


Definition of Definition of Developmental Developmental

DisabilityDisability

• Cognition and perception Cognition and perception problemsproblems

• CommunicationCommunication

• Behaviour Behaviour

• Motor functionsMotor functions

• Chronic health problemsChronic health problems

• Multiple disabilitiesMultiple disabilities


Prevalence of Prevalence of Developmental DisabilityDevelopmental Disability

• 3.5% of adults with a disability3.5% of adults with a disability

• Rates are projected to increaseRates are projected to increase• Most common disability for infants/toddlersMost common disability for infants/toddlers

• Affects Affects 25 times 25 times more than blindnessmore than blindness

• May be primary, secondary disability May be primary, secondary disability and/or a cluster of disabilitiesand/or a cluster of disabilities

• Covers 300+ reasonsCovers 300+ reasons


Developmental Disability Developmental Disability TermsTerms

• Mentally retardedMentally retarded

• Mentally handicappedMentally handicapped

• Mentally disabledMentally disabled

• Mentally disorderedMentally disordered

• Special needsSpecial needs

• Cognitive disabilityCognitive disability

• Intellectual disabilityIntellectual disability


Best Term?Best Term?

• Single term may not be achievable or Single term may not be achievable or desirabledesirable

• Take cue from the individual or their Take cue from the individual or their caregivercaregiver

• Term used by supporting agenciesTerm used by supporting agencies• Always “person first”Always “person first”• She/he has a developmental disabilityShe/he has a developmental disability• Words mirror attitude and perceptionWords mirror attitude and perception


Sociopolitical/Historical Sociopolitical/Historical BackgroundBackground

• Prior to 1830s – Age of RestraintPrior to 1830s – Age of Restraint

- Out of sight- Out of sight

• 1830-50s - Asylums are built for 1830-50s - Asylums are built for mentally ill but soon fill up with DD mentally ill but soon fill up with DD peoplepeople

• 1876 – HRC in Orillia is the 11876 – HRC in Orillia is the 1stst exclusive institution; medical model exclusive institution; medical model prevailsprevails


The paradigm shiftThe paradigm shift

• 1950s-70s – group homes and 1950s-70s – group homes and support support

for families for families

• 1970s-2000 – tri-ministry services, 1970s-2000 – tri-ministry services, cost efficient community livingcost efficient community living

• 2000 and beyond – supported 2000 and beyond – supported independent living, person-centered, independent living, person-centered, full community participationfull community participation

• The Autism boomThe Autism boom


Because it’s the lawBecause it’s the lawBecause we shouldBecause we shouldLegislationLegislation

• Accessibility for Accessibility for Ontarians with Ontarians with Disabilities Act, 2005Disabilities Act, 2005

• Human Rights Code Human Rights Code – provincial & – provincial & federalfederal

• Ontarians with Ontarians with Disabilities ActDisabilities Act

LobbyingLobbying

• Community Living – Community Living – local/province/federlocal/province/federalal

• Parent groupsParent groups

• Lawyers & lawsuitsLawyers & lawsuits

• Education systemEducation system


Core values of librarianshipCore values of librarianship

• AccessAccess

• ConfidentialityConfidentiality

• DemocracyDemocracy

• DiversityDiversity

• Education & life-Education & life-long learninglong learning

• PreservationPreservation

• Public goodPublic good

• ProfessionalismProfessionalism

• ServiceService

• Social Social responsibilityresponsibility


The role of librariesThe role of libraries

• Person-centered approach to servicePerson-centered approach to service

• Access for allAccess for all

• Service to special populationsService to special populations

• Library is reliable, unbiased, free Library is reliable, unbiased, free source of informationsource of information

• Put mission statements, policies into Put mission statements, policies into practicepractice

• Educational agency within the Educational agency within the communitycommunity


The bigger pictureThe bigger picture

• The person with a developmental The person with a developmental disabilitydisability• ParentsParents• SchoolsSchools• AssociationsAssociations• Health care providersHealth care providers• Residential homesResidential homes• Service providersService providers• EmployersEmployers• Students (high school, DSW, ECE)Students (high school, DSW, ECE)


What is unique about the person What is unique about the person with a developmental disability?with a developmental disability?

• Life-span – age defiantLife-span – age defiant

• Don’t usually self-identifyDon’t usually self-identify

• Rely on others for support/advocacyRely on others for support/advocacy

• Limited opportunities – especially Limited opportunities – especially adultsadults

• Isolation Isolation

• CommunicationCommunication difficultiesdifficulties

• Social skillsSocial skills


What is needed/wanted?What is needed/wanted?• To be welcomedTo be welcomed

• To be treated as an individualTo be treated as an individual

• Access to all community activitiesAccess to all community activities

• To be included (vs. integration)To be included (vs. integration)

• To feel safeTo feel safe

• Opportunity to make own decisionsOpportunity to make own decisions

• To pursue individual goalsTo pursue individual goals

• Freedom to choose Freedom to choose programs/servicesprograms/services


What is needed/wanted?What is needed/wanted?

• Positive interactions with staffPositive interactions with staff• Assistance in locating & retrieving Assistance in locating & retrieving

materialsmaterials

• Reader’s Advisory – appropriate Reader’s Advisory – appropriate recommendationsrecommendations

• Extra time and guidanceExtra time and guidance

• Age appropriate & ability appropriateAge appropriate & ability appropriate


How can we meet the need?How can we meet the need?

• Soul searchingSoul searching• Library documents specifically includes DDLibrary documents specifically includes DD• Assign a staff member to monitor/guideAssign a staff member to monitor/guide• Focus groups, surveys etc. with Focus groups, surveys etc. with

individuals, caregivers, local agencies etc.individuals, caregivers, local agencies etc.• Fill the gapFill the gap• Promote inclusion & empowerment in all Promote inclusion & empowerment in all

areas of library serviceareas of library service


Meeting the needMeeting the need• Investigate & research best Investigate & research best

practicespractices

• Service accommodationsService accommodations

• Professional developmentProfessional development

• Partner, network, consult etc.Partner, network, consult etc.

• Move forwardMove forward

• Sphere of influenceSphere of influence


Collection DevelopmentCollection Development

• Public libraries often 1Public libraries often 1stst point of contact point of contact• Current & accurate information serves a wide Current & accurate information serves a wide

audienceaudience• Consider special or hybrid collectionsConsider special or hybrid collections• Work with agencies – swap and/or houseWork with agencies – swap and/or house• Every library should have a basic current Every library should have a basic current

collection with a broad range of resourcescollection with a broad range of resources• General worksGeneral works• Specific works – Autism, Down Syndrome etc.Specific works – Autism, Down Syndrome etc.


Selection QuestionsSelection Questions• Is empathy promoted?Is empathy promoted?

• Is acceptance depicted?Is acceptance depicted?

• Is success emphasized?Is success emphasized?

• Are the images positive?Are the images positive?

• Will others gain understanding?Will others gain understanding?

• Is attitude “one of us” promoted?Is attitude “one of us” promoted?

• Does language stress “people first”?Does language stress “people first”?


Consider these:Consider these:• High interest/low vocabularyHigh interest/low vocabulary

• CD and text kitsCD and text kits

• Well-illustrated materialsWell-illustrated materials

• Music collectionsMusic collections

• Audio collectionsAudio collections

• Interactive softwareInteractive software

• Video-recordingsVideo-recordings


Evaluation of materialsEvaluation of materials• Weeding policyWeeding policy

• Evolution of DD philosophy – remember Evolution of DD philosophy – remember your user Bettleheim’s your user Bettleheim’s Empty FortressEmpty Fortress

• Seriously consider weeding anything Seriously consider weeding anything earlier than mid-90searlier than mid-90s

• Consult agencies re: weeding strugglesConsult agencies re: weeding struggles

• Valuable personal narrativesValuable personal narratives


Publishers Watch Alert!Publishers Watch Alert!

• Greenwood Greenwood www.greenwood.comwww.greenwood.com• Woodbine House Woodbine House www.woodbinehouse.comwww.woodbinehouse.com

• Inclusion Press Inclusion Press www.inclusion.comwww.inclusion.com Toronto! Toronto!

• Jessica Kingsley Publications Jessica Kingsley Publications www.jkp.comwww.jkp.com

• Remedia Publications Remedia Publications www.rempub.comwww.rempub.com

• James Stanfield James Stanfield www.stanfield.comwww.stanfield.com

• Tactile Vision Tactile Vision www.tactilevisioninc.comwww.tactilevisioninc.com


http://www.greenwood.com/

http://www.woodbinehouse.com/

http://www.inclusion.com/

http://www.jkp.com/

http://www.rempub.com/

http://www.stanfield.com/

http://www.tactilevisioninc.com/

Oh so brief Oh so brief suggestions!suggestions!• High interest/low vocabulary – Sidestreets, Orca High interest/low vocabulary – Sidestreets, Orca

Soundings, Bayview HighSoundings, Bayview High

• Picture fiction books – well illustrated but Picture fiction books – well illustrated but lengthier text than pre-school picture bookslengthier text than pre-school picture books

• Personal narratives and experiencesPersonal narratives and experiences

• Rooster by Don Trembath; Different croaks for Rooster by Don Trembath; Different croaks for different folks by Midori Ochiai; Disabled fablesdifferent folks by Midori Ochiai; Disabled fables

• Reflections from a different journey: what adults Reflections from a different journey: what adults with disabilities wish all parents knew by Stanley with disabilities wish all parents knew by Stanley KleinKlein

• Periodicals – Exceptional Parent; Abilities Periodicals – Exceptional Parent; Abilities All pencil drawings are presented with permission from the artist Martha Perkse

Professional/Collection Professional/Collection Development ToolsDevelopment Tools

• The Accessible Canadian Library IIThe Accessible Canadian Library II• Improving Library Services to People with Disabilities Improving Library Services to People with Disabilities

(2007)(2007)• Voices from the marginsVoices from the margins• Planning for library service to people with disabilitiesPlanning for library service to people with disabilities • Special needs reading listSpecial needs reading list • Information services for people with developmental Information services for people with developmental

disabilitiesdisabilities • Preparing staff to serve persons with disabilitiesPreparing staff to serve persons with disabilities • Guidelines for Library Services for People with Mental Guidelines for Library Services for People with Mental

RetardationRetardation


Easy Low Cost SolutionsEasy Low Cost Solutions

• Sensitivity Training – Sensitivity Training – Spinclusion, Kids Kit, Spinclusion, Kids Kit, Different TogetherDifferent Together

• Displays, book Displays, book reviews, pathfindersreviews, pathfinders

• Tap into familiar & Tap into familiar & knowledgeable staffknowledgeable staff

• Liaison with Liaison with community groups community groups and schooland school

• Specific programs Specific programs for DD and/or care for DD and/or care circlecircle

• Signage – large, Signage – large, concise and simpleconcise and simple

• VolunteersVolunteers

• Co-op studentsCo-op students

• Community hoursCommunity hours


Overview of technologies for Overview of technologies for patrons with developmental patrons with developmental disabilitiesdisabilities

• Adaptive Technologies (AT) – Adaptive Technologies (AT) – definition definition

• Needs assessmentNeeds assessment

• Helping them use ATHelping them use AT

• AT options – Devices / SoftwareAT options – Devices / Software

• Library collectionsLibrary collections

• Other servicesOther services

• Inclusion as a process in librariesInclusion as a process in libraries

• Resources for librariansResources for librariansAll pencil drawings are presented with permission from the artist Martha Perkse

Adaptive (Assistive) Technology (AT)Adaptive (Assistive) Technology (AT)

Definition of AT:Definition of AT:““Any piece of equipment or product Any piece of equipment or product system, whether acquired commercially, system, whether acquired commercially, modified or customized, that is used to modified or customized, that is used to increase, maintain or improve the increase, maintain or improve the functional capabilities of individuals with functional capabilities of individuals with disabilities”disabilities”

Assistive Technology Act, 1998Assistive Technology Act, 1998

Needs assessment for patrons Needs assessment for patrons with DDwith DD

• Identification of patrons and their Identification of patrons and their needsneeds

• Selecting supportive learning Selecting supportive learning technologiestechnologies

• Support for multiple disabilitiesSupport for multiple disabilities

• Access to appropriate information Access to appropriate information

• Support for caregiversSupport for caregivers

• Access to information for caregiversAccess to information for caregivers

• Need for training in use of technologyNeed for training in use of technology

Helping use of AT by patrons with Helping use of AT by patrons with DDDD

• Understand the patron’s needs & Understand the patron’s needs & abilitiesabilities

• Use imagination in meeting needs with Use imagination in meeting needs with

available technologyavailable technology

• Introduce a variety of technologiesIntroduce a variety of technologies

• Demonstrate & facilitate use of Demonstrate & facilitate use of technologytechnology

• Be patient; use brief verbal instructionsBe patient; use brief verbal instructions

• Provide encouragementProvide encouragement

• Build on their strengthsBuild on their strengths

Adaptive Technology options - Adaptive Technology options - DevicesDevices

• Hand-held magnifiersHand-held magnifiers

• Tape playersTape players

• Daisy players Daisy players

• Audio amplification Audio amplification systemssystems

• CCTVCCTV

• Alternative keyboardsAlternative keyboards

• Alternative monitorsAlternative monitors

• Alternative miceAlternative mice

Adaptive Technology options - Adaptive Technology options - SoftwareSoftware

• Windows accessibility featuresWindows accessibility features

• Scanning and reading - Kurzweill 3000Scanning and reading - Kurzweill 3000

• Text-to-speech - Dragon Naturally Text-to-speech - Dragon Naturally SpeakingSpeaking

• Screen magnification - Zoom textScreen magnification - Zoom text

• Screen reading - JAWSScreen reading - JAWS

• Reading support - Kurzweill 1000Reading support - Kurzweill 1000

• Numeracy/math support - IntellimathNumeracy/math support - Intellimath

• Mind mapping - InspirationMind mapping - Inspiration

• Writing - Write Out LoudWriting - Write Out Loud

Library CollectionsLibrary Collections

• Audio book kits (tape + book)Audio book kits (tape + book)

• Large print booksLarge print books

• Captioned films and videoCaptioned films and video

• Digital booksDigital books

• Talking booksTalking books

• Adaptive toysAdaptive toys

Other servicesOther services

• Providing materials in alternative Providing materials in alternative formatsformats

• Accessible & usable library websiteAccessible & usable library website

• Online catalogue of materials & Online catalogue of materials & servicesservices

• Special programs for caregiversSpecial programs for caregivers

• Special programs for patrons with DDSpecial programs for patrons with DD

• Partnering with disability organizationsPartnering with disability organizations

Creating a successful AT Creating a successful AT programprogram

• Partnering with special needs educatorsPartnering with special needs educators

• Needs analysis, procurement & Needs analysis, procurement & installationinstallation

• AT as part of “access for all” budgetAT as part of “access for all” budget

• Integration of AT with library servicesIntegration of AT with library services

• Publicizing AT services availabilityPublicizing AT services availability

• Building linkages with other librariesBuilding linkages with other libraries

• Training and support for staff and usersTraining and support for staff and users

• Maintenance of ATMaintenance of AT

Inclusion in libraries as a Inclusion in libraries as a processprocess

• Degree of access is a continuumDegree of access is a continuum

• Sustained commitment is essentialSustained commitment is essential

• Balance between accessibility and Balance between accessibility and budgetbudget

• More possibilities always exist in More possibilities always exist in futurefuture

• Sensitivity to the demography servedSensitivity to the demography served

• Requirement at policy levelRequirement at policy level

Resources for librarians Resources for librarians

• ATRC - Adaptive Technology Resource ATRC - Adaptive Technology Resource CentreCentre

- - http://www.atrc.utoronto.cahttp://www.atrc.utoronto.ca

for consultation about ATfor consultation about AT

• SNOW - Special Needs Ontario WindowSNOW - Special Needs Ontario Window

- - http://snow.utoronto.ca/http://snow.utoronto.ca/

for special needs education resourcesfor special needs education resources

http://www.atrc.utoronto.ca/

http://snow.utoronto.ca/

Ten Commandments of Ten Commandments of CommunicationCommunication

• Speak directly & Speak directly & clearly to the clearly to the personperson

• Offer to shake Offer to shake handshands

• Identify yourselfIdentify yourself

• Listen-speak-listenListen-speak-listen

• Patience & respectPatience & respect

• Eye contact-eye levelEye contact-eye level• Show and tell – walk Show and tell – walk

and talk – repeatand talk – repeat• Relax and take your Relax and take your

timetime• Ask for help if you Ask for help if you

are having difficulty are having difficulty understandingunderstanding

• Thanks and follow-upThanks and follow-up


Developmental disabilities, Developmental disabilities, libraries and their futurelibraries and their future

• 2004 study of accredited library schools – 2004 study of accredited library schools – zero education related to disabilities!!zero education related to disabilities!!

• Step 1 – educate librarians & educatorsStep 1 – educate librarians & educators• # of people with disabilities will increase = # of people with disabilities will increase =

pressure to accommodatepressure to accommodate• Services and resources must be barrier Services and resources must be barrier

free in all respectsfree in all respects• Networking, partnerships –Networking, partnerships –

buzz words must be action wordsbuzz words must be action words


Pull up the anchor & set Pull up the anchor & set sail!sail!

• Need sincere goodwillNeed sincere goodwill• Self-regulation – there is no legislation, Self-regulation – there is no legislation,

policy or procedure that can enforce policy or procedure that can enforce attitudeattitude

• Lessons learned by all are invaluableLessons learned by all are invaluable• What we makeWhat we make doable doable for all makes it for all makes it

possiblepossible for those with DD for those with DD• Don’t despair – just set out do somethingDon’t despair – just set out do something

Let the shameful walls of exclusion finally Let the shameful walls of exclusion finally come tumbling downcome tumbling down

George H.W. Bush 1990George H.W. Bush 1990

Thank you for your time and attentionThank you for your time and attention

Anne Dorsey Anne Dorsey [email protected]@barrie.ca

Sambhavi Chandrashekar Sambhavi Chandrashekar [email protected]@utoronto.ca


Documents

Serving Patrons with Developmental Disabilities (and the people that care and support them) Anne Dorsey Barrie Public Library, Adult Services Librarian