Communication Guidelines Project Team & Links
Project Team
The Rett Syndrome Communication Guidelines research project was funded by a HeART grant from International Rett Syndrome Foundation. The project team consisted of:
- Gillian S. Townend, PhD CertMRCSLT, Speech-Language Pathologist and Researcher,
Rett Expertise Centre Netherlands-GKC, Maastricht University Medical Center, Maastricht,
The Netherlands. - Theresa E. Bartolotta, PhD CCC-SLP, Speech-Language Pathologist and Adjunct Professor,
Department of Speech-Language Pathology, School of Education, Monmouth University, NJ, USA. - 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.
- 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.
- 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