Communication Guidelines Project Team & Links

Project Team

The Rett Syndrome Communication Guidelines research project was funded by a HeART grant from Rettsyndrome.org. The project team consisted of:

  1. Gillian S. Townend, PhD CertMRCSLT, Speech-Language Pathologist and Researcher,
    Rett Expertise Centre Netherlands-GKC, Maastricht University Medical Center, Maastricht,
    The Netherlands.
  2. Theresa E. Bartolotta, PhD CCC-SLP, Speech-Language Pathologist and Adjunct Professor,
    Department of Speech-Language Pathology, School of Education, Monmouth University, NJ, USA.
  3. Anna Urbanowicz, PhD, Occupational Therapist and VC Postdoctoral Fellow, Social and Global Studies Centre, School of Global, Urban, and Social Studies, RMIT University, Melbourne, Australia.
  4. Helena Wandin, MSc reg. SLP, Speech-Language Pathologist, Swedish National Center for Rett Syndrome and Related Disorders, Frösön, and PhD student, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
  5. Leopold M. G. Curfs, Director of the Rett Expertise Centre Netherlands-GKC, Maastricht
    University Medical Center, and Professor of Intellectual Disabilities, Maastricht University,
    Maastricht, The Netherlands.

 

Communication Guideline Links

Section 1

United States National Joint Committee for the Communication Needs of Persons with Severe Disabilities https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html

NJC Communication Bill of Rights is available at: https://www.asha.org/uploadedFiles/NJC-Communication-Bill-Rights.pdf

SCOPE Australia Communication Bill of Rights is available at: https://www.scopeaust.org.au/wp-content/uploads/2017/01/Bill-of-rights-2017_a4.pdf

Section 3

Nutritional and Digestive Health: An Information Booklet for Families and Careers. https://rett.telethonkids.org.au/siteassets/media-docs—rett-syndrome/growth_and_nutrition-booklet.pdf

Growth and Nutrition in Rett Syndrome: Checklist for Clinicians on Assessment and Management. Telethon Institute for Child Health Research. Perth, Western Australia. https://rett.telethonkids.org.au/siteassets/media-docs—rett-syndrome/guidelines_nutrition_and_growth.pdf

Scoliosis in Rett Syndrome: A Collaboration Between Parents, Clinicians and Researchers. https://rett.telethonkids.org.au/siteassets/media-docs—rett-syndrome/scoliosis_booklet.pdf

Gastro-intestinal Disorders in Rett syndrome: Checklist for Clinicians on Assessment and Management. https://rett.telethonkids.org.au/siteassets/media-docs—rett-syndrome/guidelines_gastro_intestinal.pdf

Section 4

Personal Communication Passports: Guidelines for Good Practice. https://www.communicationpassports.org.uk/resources/

Building Foundational Communication Support for Individuals with Rett Syndrome.https://rettuniversity.org/wp-content/uploads/2015/05/RettU-Communication-One-Page-FINAL.pdf

Scoliosis in Rett Syndrome: A Collaboration Between Parents, Clinicians and Researchers. https://rett.telethonkids.org.au/siteassets/media-docs—rett-syndrome/scoliosis_booklet.pdf

Section 5

International Classification of Functioning, Disability and Health. https://www.who.int/classifications/icf/en/

Social Networks Inventory: A Communication Inventory for Individuals with Complex Communication Needs and their Communication Partners. https://www.attainmentcompany.com/social-networks-package

Section 8

ARASAAC: http://www.arasaac.org/

Project Core: http://www.project-core.com

Bildstod: http://bildstod.se

Appendix 3:

GL Assessment: https://www.gl-assessment.co.uk/

Computer-Based Instruction for Low Motor Language Testing (C-BiLLT): http://www.c-bilt.com/

Clinical Evaluation of Language Fundamentals – Preschool Third Edition: http://www.pearsonclinical.com/

Clinical Evaluation of Language Fundamentals – Fifth Edition: http://www.pearsonclinical.com/

Communication Matrix: https://www.communicationmatrix.org/

Tobii Dynavox: http://tdvox.web-downloads.s3.amazonaws.com/MyTobiiDynavox/dagg%202%20-%20writable.pdf

Functional Communication Profile – Revised: https://www.linguisystems.com/

New Reynell Developmental Language Scales: https://www.gl-assessment.co.uk/products/new-reynell-developmental-language-scales-nrdls/

Peabody Picture Vocabulary Test, Fifth Edition: http://www.pearsonclinical.com/

Pragmatics Profile of Everyday Communication Skills in Children (Revised Edition): http://complexneeds.org.uk/modules/Module-2.4-Assessment-monitoring-and-evaluation/All/downloads/m08p080c/the_pragmatics_profile.pdf

Pragmatics Profile of Everyday Communication Skills in Adults: https://www.flexiblemindtherapy.com/uploads/6/5/5/2/65520823/pragmatics_profile_adults.pdf

Pragmatics Profile for People who use AAC: https://acecentre.org.uk/resources/pragmatics-profile-people-use-aac/

Preschool Language Scales, Fifth Edition: http://www.pearsonclinical.com/

Test of Aided Communication Symbol Performance: https://www.spectronics.com.au/product/tasp-test-of-aided-communication-symbol-performance

Test of Early Communication and Emerging Language: http://www.pearsonclinical.com/

The Triple C: Checklist of Communication Competencies: http://www.spectronics.com.au/

Verbal Behavior Milestone Assessment & Placement Program (VB-MAPP): http://www.avbpress.com/

Vineland Adaptive Behavior Scales: http://www.pearsonclinical.com/

Canadian Occupational Performance Measure: http://www.thecopm.ca/

Goal Attainment Scaling: https://www.sralab.org/rehabilitation-measures/goal-attainment-scale

The SETT Framework: http://www.joyzabala.com/

Talking Mats: http://www.talkingmats.com/

Rett Syndrome Primary Care Guidelines: https://www.rettsyndrome.org/wp-content/uploads/RSO_PrimaryCareGdlns_Final1919-1.pdf

RettEd webinars (range of Rett-related research and care topics): https://www.rettsyndrome.org/for-families/education/

Rett Syndrome Europe – Rett Resource: https://www.rettsyndrome.eu/rett-resource/

Rett Disorders Alliance UK – Rett Syndrome Healthcare Checklist: https://www.rettuk.org/resources/resources-for-families/rett-disorders-alliance-health-checklist/

Rett UK Health Passport: https://www.rettuk.org/wp-content/uploads/2018/04/Rett-Health-Passport-Fillable.pdf

French National Rett Syndrome Guidelines: https://www.has-sante.fr/upload/docs/application/pdf/2017-05/dir4/pnds_-_syndromes_de_rett_et_ apparentes_2017-05-03_14-15-56_224.pdf 

US and international Rett clinics: https://www.rettsyndrome.org/for-families/rett-syndrome-clinics/

European Rett associations: https://www.rettsyndrome.eu/member-associations/

International – ISAAC: https://www.isaac-online.org

FREE RESOURCES/ ADVICE SHEETS

Project Core, Universal Core Vocabulary: http://www.project-core.com/communication-systems/

ARASAAC: http://www.arasaac.org/

Bildstöd.se: http://bildstod.se/

SymbolsForAll: https://www.symbolsforall.org.uk/

Project Core – Quick Reference Guides – Communicating Yes or No: https://www.dropbox.com/s/dl/6orcxy9jjj5ctdv/Communicating_Yes_and_No.pdf

Rett UK – Communication Resources:
https://www.rettuk.org/wp-content/uploads/2017/03/formatted-website-yes-no.pdf

Project Core – Quick Reference Guides – Modeling the Universal Core: https://www.dropbox.com/s/dl/yvx09fxe4t8mx2o/Project_Core_Modeling_One-pager.pdf

Rett UK – Communication Resources – Modeling: https://www.rettuk.org/wp-content/uploads/2017/03/formatted-website-modeling.pdf

Project Core – Quick Reference Guides – Partner Assisted Scanning: https://www.dropbox.com/s/dl/1cccs133h7q4voi/Partner_Assisted_Scanning.pdf 

Rett UK – Communication Resources – Partner Assisted Scanning: https://www.rettuk.org/wp-content/uploads/2017/03/formatted-website-pas.pdf

Project Core: http://www.project-core.com/

Dynamic Learning Maps: https://www.dlmpd.com/

Tar Heel Reader (free, accessible online books for all ages): https://tarheelreader.org

Tar Heel Shared Reader: https://sharedreader.org

Reading Avenue by Tobii Dynavox (free resource as part of Boardmaker Online): https://www.tobiidynavox.com/en-US/software/web-applications/boardmakeronline/

Rett UK – Communication Resources – Getting Started with Reading: https://www.rettuk.org/wp-content/uploads/2017/03/formatted-website-reading1.pdf

Rett UK – Communication Resources – Getting Started with Writing: https://www.rettuk.org/wp-content/uploads/2017/03/formatted-website-writinga.pdf 

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