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

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Presentation on theme: "Serving Patrons with Developmental Disabilities (and the people that care and support them) Anne Dorsey Barrie Public Library, Adult Services Librarian."— Presentation transcript:

1 Serving Patrons with Developmental Disabilities (and the people that care and support them) Anne Dorsey Barrie Public Library, Adult Services Librarian Sambhavi Chandrashekar University of Toronto, PhD student February 01, 2007 All pencil drawings are presented with permission from the artist Martha Perkse

2 To reach a port we must sail, sometimes with the wind and sometimes against it. But we must not drift or lie at anchor. Oliver Wendell Holmes All pencil drawings are presented with permission from the artist Martha Perkse

3 Purpose of this session Recognize people with developmental disabilities as growing integral portion of library users Recognize people with developmental disabilities as growing integral portion of library users Acknowledge the efforts of librarians to work with people with developmental disabilities Acknowledge the efforts of librarians to work with people with developmental disabilities Develop some skills necessary to serve people with developmental disabilities Develop some skills necessary to serve people with developmental disabilities All pencil drawings are presented with permission from the artist Martha Perkse

4 Definition of Developmental Disability Definition of Developmental Disability Cognition and perception problems Cognition and perception problems Communication Communication Behaviour Behaviour Motor functions Motor functions Chronic health problems Chronic health problems Multiple disabilities Multiple disabilities All pencil drawings are presented with permission from the artist Martha Perkse

5 Prevalence of Developmental Disability 3.5% of adults with a disability 3.5% of adults with a disability Rates are projected to increase Rates are projected to increase Most common disability for infants/toddlers Most common disability for infants/toddlers Affects 25 times more than blindness Affects 25 times more than blindness May be primary, secondary disability and/or a cluster of disabilities May be primary, secondary disability and/or a cluster of disabilities Covers 300+ reasons Covers 300+ reasons All pencil drawings are presented with permission from the artist Martha Perkse

6 Developmental Disability Terms Mentally retarded Mentally retarded Mentally handicapped Mentally handicapped Mentally disabled Mentally disabled Mentally disordered Mentally disordered Special needs Special needs Cognitive disability Cognitive disability Intellectual disability Intellectual disability All pencil drawings are presented with permission from the artist Martha Perkse

7 Best Term? Single term may not be achievable or desirable Single term may not be achievable or desirable Take cue from the individual or their caregiver Take cue from the individual or their caregiver Term used by supporting agencies Term used by supporting agencies Always person first Always person first She/he has a developmental disability She/he has a developmental disability Words mirror attitude and perception Words mirror attitude and perception All pencil drawings are presented with permission from the artist Martha Perkse

8 Sociopolitical/Historical Background Prior to 1830s – Age of Restraint Prior to 1830s – Age of Restraint - Out of sight - Out of sight 1830-50s - Asylums are built for mentally ill but soon fill up with DD people 1830-50s - Asylums are built for mentally ill but soon fill up with DD people 1876 – HRC in Orillia is the 1 st exclusive institution; medical model prevails 1876 – HRC in Orillia is the 1 st exclusive institution; medical model prevails All pencil drawings are presented with permission from the artist Martha Perkse

9 The paradigm shift 1950s-70s – group homes and support 1950s-70s – group homes and support for families 1970s-2000 – tri-ministry services, cost efficient community living 1970s-2000 – tri-ministry services, cost efficient community living 2000 and beyond – supported independent living, person-centered, full community participation 2000 and beyond – supported independent living, person-centered, full community participation The Autism boom The Autism boom All pencil drawings are presented with permission from the artist Martha Perkse

10 Because its the law Because we should Legislation Accessibility for Ontarians with Disabilities Act, 2005 Accessibility for Ontarians with Disabilities Act, 2005 Human Rights Code – provincial & federal Human Rights Code – provincial & federal Ontarians with Disabilities Act Ontarians with Disabilities ActLobbying Community Living – local/province/federal Community Living – local/province/federal Parent groups Parent groups Lawyers & lawsuits Lawyers & lawsuits Education system Education system All pencil drawings are presented with permission from the artist Martha Perkse

11 Core values of librarianship Access Access Confidentiality Confidentiality Democracy Democracy Diversity Diversity Education & life-long learning Education & life-long learning Preservation Preservation Public good Public good Professionalism Professionalism Service Service Social responsibility Social responsibility All pencil drawings are presented with permission from the artist Martha Perkse

12 The role of libraries Person-centered approach to service Person-centered approach to service Access for all Access for all Service to special populations Service to special populations Library is reliable, unbiased, free source of information Library is reliable, unbiased, free source of information Put mission statements, policies into practice Put mission statements, policies into practice Educational agency within the community Educational agency within the community All pencil drawings are presented with permission from the artist Martha Perkse

13 The bigger picture The person with a developmental The person with a developmental disability disability Parents Parents Schools Schools Associations Associations Health care providers Health care providers Residential homes Residential homes Service providers Service providers Employers Employers Students (high school, DSW, ECE) Students (high school, DSW, ECE) All pencil drawings are presented with permission from the artist Martha Perkse

14 What is unique about the person with a developmental disability? Life-span – age defiant Life-span – age defiant Dont usually self-identify Dont usually self-identify Rely on others for support/advocacy Rely on others for support/advocacy Limited opportunities – especially adults Limited opportunities – especially adults Isolation Isolation Communication difficulties Communication difficulties Social skills Social skills All pencil drawings are presented with permission from the artist Martha Perkse

15 What is needed/wanted? To be welcomed To be welcomed To be treated as an individual To be treated as an individual Access to all community activities Access to all community activities To be included (vs. integration) To be included (vs. integration) To feel safe To feel safe Opportunity to make own decisions Opportunity to make own decisions To pursue individual goals To pursue individual goals Freedom to choose programs/services Freedom to choose programs/services All pencil drawings are presented with permission from the artist Martha Perkse

16 What is needed/wanted? Positive interactions with staff Positive interactions with staff Assistance in locating & retrieving materials Assistance in locating & retrieving materials Readers Advisory – appropriate recommendations Readers Advisory – appropriate recommendations Extra time and guidance Extra time and guidance Age appropriate & ability appropriate Age appropriate & ability appropriate All pencil drawings are presented with permission from the artist Martha Perkse

17 How can we meet the need? Soul searching Soul searching Library documents specifically includes DD Library documents specifically includes DD Assign a staff member to monitor/guide Assign a staff member to monitor/guide Focus groups, surveys etc. with individuals, caregivers, local agencies etc. Focus groups, surveys etc. with individuals, caregivers, local agencies etc. Fill the gap Fill the gap Promote inclusion & empowerment in all areas of library service Promote inclusion & empowerment in all areas of library service All pencil drawings are presented with permission from the artist Martha Perkse

18 Meeting the need Investigate & research best practices Investigate & research best practices Service accommodations Service accommodations Professional development Professional development Partner, network, consult etc. Partner, network, consult etc. Move forward Move forward Sphere of influence Sphere of influence All pencil drawings are presented with permission from the artist Martha Perkse

19 Collection Development Public libraries often 1 st point of contact Public libraries often 1 st point of contact Current & accurate information serves a wide audience Current & accurate information serves a wide audience Consider special or hybrid collections Consider special or hybrid collections Work with agencies – swap and/or house Work with agencies – swap and/or house Every library should have a basic current collection with a broad range of resources Every library should have a basic current collection with a broad range of resources General works General works Specific works – Autism, Down Syndrome etc. Specific works – Autism, Down Syndrome etc. All pencil drawings are presented with permission from the artist Martha Perkse

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

21 Consider these: High interest/low vocabulary High interest/low vocabulary CD and text kits CD and text kits Well-illustrated materials Well-illustrated materials Music collections Music collections Audio collections Audio collections Interactive software Interactive software Video-recordings Video-recordings All pencil drawings are presented with permission from the artist Martha Perkse

22 Evaluation of materials Weeding policy Weeding policy Evolution of DD philosophy – remember your user Bettleheims Empty Fortress Evolution of DD philosophy – remember your user Bettleheims Empty Fortress Seriously consider weeding anything earlier than mid-90s Seriously consider weeding anything earlier than mid-90s Consult agencies re: weeding struggles Consult agencies re: weeding struggles Valuable personal narratives Valuable personal narratives All pencil drawings are presented with permission from the artist Martha Perkse

23 Publishers Watch Alert! Greenwood www.greenwood.com Greenwood www.greenwood.comwww.greenwood.com Woodbine House www.woodbinehouse.com Woodbine House www.woodbinehouse.comwww.woodbinehouse.com Inclusion Press www.inclusion.com Toronto! Inclusion Press www.inclusion.com Toronto!www.inclusion.com Jessica Kingsley Publications www.jkp.com Jessica Kingsley Publications www.jkp.comwww.jkp.com Remedia Publications www.rempub.com Remedia Publications www.rempub.comwww.rempub.com James Stanfield www.stanfield.com James Stanfield www.stanfield.comwww.stanfield.com Tactile Vision www.tactilevisioninc.com Tactile Vision www.tactilevisioninc.comwww.tactilevisioninc.com All pencil drawings are presented with permission from the artist Martha Perkse

24 Oh so brief suggestions! Oh so brief suggestions! High interest/low vocabulary – Sidestreets, Orca Soundings, Bayview High High interest/low vocabulary – Sidestreets, Orca Soundings, Bayview High Picture fiction books – well illustrated but lengthier text than pre-school picture books Picture fiction books – well illustrated but lengthier text than pre-school picture books Personal narratives and experiences Personal narratives and experiences Rooster by Don Trembath; Different croaks for different folks by Midori Ochiai; Disabled fables Rooster by Don Trembath; Different croaks for different folks by Midori Ochiai; Disabled fables Reflections from a different journey: what adults with disabilities wish all parents knew by Stanley Klein Reflections from a different journey: what adults with disabilities wish all parents knew by Stanley Klein Periodicals – Exceptional Parent; Abilities Periodicals – Exceptional Parent; Abilities All pencil drawings are presented with permission from the artist Martha Perkse

25 Professional/Collection Development Tools The Accessible Canadian Library II The Accessible Canadian Library II Improving Library Services to People with Disabilities (2007) Improving Library Services to People with Disabilities (2007) Voices from the margins Voices from the margins Planning for library service to people with disabilities Planning for library service to people with disabilities Special needs reading list Special needs reading list Information services for people with developmental disabilities Information services for people with developmental disabilities Preparing staff to serve persons with disabilities Preparing staff to serve persons with disabilities Guidelines for Library Services for People with Mental Retardation Guidelines for Library Services for People with Mental Retardation All pencil drawings are presented with permission from the artist Martha Perkse

26 Easy Low Cost Solutions Sensitivity Training – Spinclusion, Kids Kit, Different Together Sensitivity Training – Spinclusion, Kids Kit, Different Together Displays, book reviews, pathfinders Displays, book reviews, pathfinders Tap into familiar & knowledgeable staff Tap into familiar & knowledgeable staff Liaison with community groups and school Liaison with community groups and school Specific programs for DD and/or care circle Specific programs for DD and/or care circle Signage – large, concise and simple Signage – large, concise and simple Volunteers Volunteers Co-op students Co-op students Community hours Community hours All pencil drawings are presented with permission from the artist Martha Perkse

27 Overview of technologies for patrons with developmental disabilities Adaptive Technologies (AT) – definition Adaptive Technologies (AT) – definition Needs assessment Needs assessment Helping them use AT Helping them use AT AT options – Devices / Software AT options – Devices / Software Library collections Library collections Other services Other services Inclusion as a process in libraries Inclusion as a process in libraries Resources for librarians Resources for librarians All pencil drawings are presented with permission from the artist Martha Perkse

28 Adaptive (Assistive) Technology (AT) Definition of AT: Any piece of equipment or product system, whether acquired commercially, modified or customized, that is used to increase, maintain or improve the functional capabilities of individuals with disabilities Assistive Technology Act, 1998

29 Needs assessment for patrons with DD Identification of patrons and their needs Identification of patrons and their needs Selecting supportive learning technologies Selecting supportive learning technologies Support for multiple disabilities Support for multiple disabilities Access to appropriate information Access to appropriate information Support for caregivers Support for caregivers Access to information for caregivers Access to information for caregivers Need for training in use of technology Need for training in use of technology

30 Helping use of AT by patrons with DD Understand the patrons needs & abilities Understand the patrons needs & abilities Use imagination in meeting needs with Use imagination in meeting needs with available technology available technology Introduce a variety of technologies Introduce a variety of technologies Demonstrate & facilitate use of technology Demonstrate & facilitate use of technology Be patient; use brief verbal instructions Be patient; use brief verbal instructions Provide encouragement Provide encouragement Build on their strengths Build on their strengths

31 Adaptive Technology options - Devices Hand-held magnifiers Hand-held magnifiers Tape players Tape players Daisy players Daisy players Audio amplification systems Audio amplification systems CCTV CCTV Alternative keyboards Alternative keyboards Alternative monitors Alternative monitors Alternative mice Alternative mice

32 Adaptive Technology options - Software Windows accessibility features Windows accessibility features Scanning and reading - Kurzweill 3000 Scanning and reading - Kurzweill 3000 Text-to-speech - Dragon Naturally Speaking Text-to-speech - Dragon Naturally Speaking Screen magnification - Zoom text Screen magnification - Zoom text Screen reading - JAWS Screen reading - JAWS Reading support - Kurzweill 1000 Reading support - Kurzweill 1000 Numeracy/math support - Intellimath Numeracy/math support - Intellimath Mind mapping - Inspiration Mind mapping - Inspiration Writing - Write Out Loud Writing - Write Out Loud

33 Library Collections Audio book kits (tape + book) Audio book kits (tape + book) Large print books Large print books Captioned films and video Captioned films and video Digital books Digital books Talking books Talking books Adaptive toys Adaptive toys

34 Other services Providing materials in alternative formats Providing materials in alternative formats Accessible & usable library website Accessible & usable library website Online catalogue of materials & services Online catalogue of materials & services Special programs for caregivers Special programs for caregivers Special programs for patrons with DD Special programs for patrons with DD Partnering with disability organizations Partnering with disability organizations

35 Creating a successful AT program Partnering with special needs educators Partnering with special needs educators Needs analysis, procurement & installation Needs analysis, procurement & installation AT as part of access for all budget AT as part of access for all budget Integration of AT with library services Integration of AT with library services Publicizing AT services availability Publicizing AT services availability Building linkages with other libraries Building linkages with other libraries Training and support for staff and users Training and support for staff and users Maintenance of AT Maintenance of AT

36 Inclusion in libraries as a process Degree of access is a continuum Degree of access is a continuum Sustained commitment is essential Sustained commitment is essential Balance between accessibility and budget Balance between accessibility and budget More possibilities always exist in future More possibilities always exist in future Sensitivity to the demography served Sensitivity to the demography served Requirement at policy level Requirement at policy level

37 Resources for librarians ATRC - Adaptive Technology Resource Centre ATRC - Adaptive Technology Resource Centre - http://www.atrc.utoronto.ca - http://www.atrc.utoronto.cahttp://www.atrc.utoronto.ca for consultation about AT for consultation about AT SNOW - Special Needs Ontario Window SNOW - Special Needs Ontario Window - http://snow.utoronto.ca/ - http://snow.utoronto.ca/http://snow.utoronto.ca/ for special needs education resources for special needs education resources

38 Ten Commandments of Communication Speak directly & clearly to the person Speak directly & clearly to the person Offer to shake hands Offer to shake hands Identify yourself Identify yourself Listen-speak-listen Listen-speak-listen Patience & respect Patience & respect Eye contact-eye level Eye contact-eye level Show and tell – walk and talk – repeat Show and tell – walk and talk – repeat Relax and take your time Relax and take your time Ask for help if you are having difficulty understanding Ask for help if you are having difficulty understanding Thanks and follow-up Thanks and follow-up All pencil drawings are presented with permission from the artist Martha Perkse

39 Developmental disabilities, libraries and their future 2004 study of accredited library schools – zero education related to disabilities!! 2004 study of accredited library schools – zero education related to disabilities!! Step 1 – educate librarians & educators Step 1 – educate librarians & educators # of people with disabilities will increase = pressure to accommodate # of people with disabilities will increase = pressure to accommodate Services and resources must be barrier free in all respects Services and resources must be barrier free in all respects Networking, partnerships – Networking, partnerships – buzz words must be action words buzz words must be action words All pencil drawings are presented with permission from the artist Martha Perkse

40 Pull up the anchor & set sail! Need sincere goodwill Need sincere goodwill Self-regulation – there is no legislation, policy or procedure that can enforce attitude Self-regulation – there is no legislation, policy or procedure that can enforce attitude Lessons learned by all are invaluable Lessons learned by all are invaluable What we make doable for all makes it possible for those with DD What we make doable for all makes it possible for those with DD Dont despair – just set out do something Dont despair – just set out do something Let the shameful walls of exclusion finally come tumbling down George H.W. Bush 1990

41 Thank you for your time and attention Anne Dorsey adorsey@barrie.ca Sambhavi Chandrashekar sambhavi.chandrashekar@utoronto.ca sambhavi.chandrashekar@utoronto.ca All pencil drawings are presented with permission from the artist Martha Perkse


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