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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 Sambhavi Chandrashekar University of Toronto, PhD student February 01, 2007

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Serving patrons with developmental disabilities and the people that care and support them l.jpg

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


Slide2 l.jpg

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


Purpose of this session l.jpg
Purpose of this session sometimes against it. But we must not drift or lie at anchor.

  • 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 l.jpg
Definition of Developmental Disability sometimes against it. But we must not drift or lie at anchor.

  • Cognition and perception problems

  • Communication

  • Behaviour

  • Motor functions

  • Chronic health problems

  • Multiple disabilities

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


Prevalence of developmental disability l.jpg
Prevalence of Developmental Disability sometimes against it. But we must not drift or lie at anchor.

  • 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

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


Developmental disability terms l.jpg
Developmental Disability Terms sometimes against it. But we must not drift or lie at anchor.

  • 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 l.jpg
Best Term? sometimes against it. But we must not drift or lie at anchor.

  • 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 l.jpg
Sociopolitical/Historical Background sometimes against it. But we must not drift or lie at anchor.

  • 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 l.jpg
The paradigm shift sometimes against it. But we must not drift or lie at anchor.

  • 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

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


Because it s the law because we should l.jpg

Legislation sometimes against it. But we must not drift or lie at anchor.

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

Because it’s the lawBecause we should

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


Core values of librarianship l.jpg

Access sometimes against it. But we must not drift or lie at anchor.

Confidentiality

Democracy

Diversity

Education & life-long learning

Preservation

Public good

Professionalism

Service

Social responsibility

Core values of librarianship

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


The role of libraries l.jpg
The role of libraries sometimes against it. But we must not drift or lie at anchor.

  • 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 l.jpg
The bigger picture sometimes against it. But we must not drift or lie at anchor.

  • 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 l.jpg
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

  • Communicationdifficulties

  • Social skills

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


What is needed wanted l.jpg
What is needed/wanted? disability?

  • 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

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


What is needed wanted16 l.jpg
What is needed/wanted? disability?

  • 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 l.jpg
How can we meet the need? disability?

  • 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

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


Meeting the need l.jpg
Meeting the need disability?

  • Investigate & research best practices

  • Service accommodations

  • Professional development

  • Partner, network, consult etc.

  • Move forward

  • Sphere of influence

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


Collection development l.jpg
Collection Development disability?

  • 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 l.jpg
Selection Questions disability?

  • 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 l.jpg
Consider these: disability?

  • 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 l.jpg
Evaluation of materials disability?

  • 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

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


Publishers watch alert l.jpg
Publishers Watch Alert! disability?

  • 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 l.jpg
Oh so brief suggestions! disability?

  • 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 l.jpg
Professional/Collection Development Tools disability?

  • 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 l.jpg

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

Easy Low Cost Solutions

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


Overview of technologies for patrons with developmental disabilities l.jpg

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 l.jpg

Adaptive (Assistive) Technology (AT) disabilities

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 l.jpg

Needs assessment for patrons with DD disabilities

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 l.jpg

Helping use of AT by patrons with DD disabilities

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 l.jpg

Adaptive Technology options - Devices disabilities

Hand-held magnifiers

Tape players

Daisy players

Audio amplification systems

CCTV

Alternative keyboards

Alternative monitors

Alternative mice


Adaptive technology options software l.jpg

Adaptive Technology options - Software disabilities

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 l.jpg

Library Collections disabilities

Audio book kits (tape + book)

Large print books

Captioned films and video

Digital books

Talking books

Adaptive toys


Other services l.jpg

Other services disabilities

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 l.jpg

Creating a successful AT program disabilities

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 l.jpg

Inclusion in libraries as a process disabilities

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 l.jpg

Resources for librarians disabilities

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 l.jpg

Speak directly & clearly to the person disabilities

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

Ten Commandments of Communication

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


Developmental disabilities libraries and their future l.jpg
Developmental disabilities, libraries and their future disabilities

  • 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 l.jpg
Pull up the anchor & set sail! disabilities

  • 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


Thank you for your time and attention l.jpg

Thank you for your time and attention disabilities

Anne Dorsey

[email protected]

Sambhavi Chandrashekar [email protected]

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


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