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

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 If you remember only one thing today it is that you must do something/take action All pencil drawings are presented with permission from the artist Martha Perkse

Purpose of this session Recognize people with developmental disabilities as growing integral portion of library users Acknowledge the efforts of librarians to work with 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

Definition of Developmental Disability Cognition and perception problems Communication Behaviour Motor functions Chronic health problems Multiple disabilities There is often a medical, behavioural, educational & functional component All pencil drawings are presented with permission from the artist Martha Perkse

Prevalence of Developmental Disability 3.5% of adults with a disability Rates are projected to increase Most common disability for infants/toddlers Affects 25 times more than blindness May be primary, secondary disability and/or a cluster of disabilities Covers 300+ reasons 25 times more than blindness highlights the fact that most disabilities are not related to intelligence – other disabilities can speak for themselves and organize lobbying efforts and associations. DD is dependent on family, caregivers etc. Often DD unable to self-identify or self-advocate Not all DD are the result of a diagnosis - All pencil drawings are presented with permission from the artist Martha Perkse

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

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

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

The paradigm shift 1950s-70s – group homes and support for families 1970s-2000 – tri-ministry services, cost efficient community living 2000 and beyond – supported independent living, person-centered, full community participation The Autism boom 2000 and beyond – a variety of service and care options with emphasis on supported independent living & managed care; current trend toward full participation in school, work, home & recreational activities; co-op/volunteer opportunities in the community; community based jobs (ongoing government initiatives & funding that are person-centered) All pencil drawings are presented with permission from the artist Martha Perkse

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

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

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

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

What is unique about the person with a developmental disability? Life-span – age defiant Don’t usually self-identify Rely on others for support/advocacy Limited opportunities – especially adults Isolation Communication difficulties Social skills All pencil drawings are presented with permission from the artist Martha Perkse

What is needed/wanted? To be welcomed To be treated as an individual Access to all community activities To be included (vs. integration) To feel safe Opportunity to make own decisions To pursue individual goals Freedom to choose programs/services We often make assumptions about diagnosis, level of ability, personality etc. Often face isolation All pencil drawings are presented with permission from the artist Martha Perkse

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

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

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

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

Selection Questions Is empathy promoted? Is acceptance depicted? Is success emphasized? Are the images positive? Will others gain understanding? Is attitude “one of us” promoted? Does language stress “people first”? All pencil drawings are presented with permission from the artist Martha Perkse

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

Evaluation of materials Weeding policy Evolution of DD philosophy – remember your user Bettleheim’s Empty Fortress Seriously consider weeding anything earlier than mid-90s Consult agencies re: weeding struggles Valuable personal narratives We have removed outdated materials on homosexuals, Natives etc. All pencil drawings are presented with permission from the artist Martha Perkse

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

Oh so brief suggestions! High interest/low vocabulary – Sidestreets, Orca Soundings, Bayview High Picture fiction books – well illustrated but lengthier text than pre-school picture books Personal narratives and experiences 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 Periodicals – Exceptional Parent; Abilities All pencil drawings are presented with permission from the artist Martha Perkse

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pull up the anchor & set sail! Need sincere goodwill Self-regulation – there is no legislation, policy or procedure that can enforce attitude Lessons learned by all are invaluable What we make doable for all makes it possible for those with DD Don’t despair – just set out do something Let the shameful walls of exclusion finally come tumbling down George H.W. Bush 1990 Let me leave you with this thought – Pull up the anchor and set sail

Thank you for your time and attention Anne Dorsey adorsey@barrie.ca Sambhavi Chandrashekar sambhavi.chandrashekar@utoronto.ca Thank you Sam, Michelle Penta, Sandi Friary, Wendy Newman All pencil drawings are presented with permission from the artist Martha Perkse