Lobbying and Campaigning for Solutions : the case of the battle for a law on LD in Italy Enrico Ghidoni, MD Associazione Italiana Dislessia

The situation in Italy in 1997 No norms regarding LD The word dyslexia absent in all official State and Ministry of Education documents No recognition Limited diagnostic competency in services No treatment or school accommodations for LD pupils No rights No dyslexia??

1997 AID (Associazione Italiana Dislessia) founded in Bologna by Stella, Profumo and others Member of EDA since 1999

1998 BOLOGNA First Congress of AID LA DISLESSIA ESISTE ANCHE IN ITALIA? Does dyslexia also exist in Italy? 1

The activities of AID Information and support for parents Teacher information and training Improvement of diagnostic facilities Creation of a social awareness about the issue of LD

A long term strategy Analysis of the system (network of relationships between social entities regarding dyslexia) An ecological model of interactions The insertion of AID in this system Activities directed at all strategically relevant people and institutions

Nicolson, 2002

School teachers headmasters Health professionals Neuropsychiatrist Psychologist Speech therapist Family DYS Ministry of Education Disability Department ACTION OF AID Parliament ACTIVITIES OF AID Senate House of Representatives Media Parents Children Adults

Information and support for parents Creation of a network of AID local committees (over 90 today) Creation of a website for information and a forum for discussion of relevant issues Various public events and opportunities to spread information Counselling for the family: central help-line and local information points Books and movies about dyslexia

Teacher training Local events National events and courses Books at various levels (from primary school to university) Website with useful documents and links Creation of a network of trainer teachers for different school levels Screening interventions

Improvement of diagnostic facilities Updating courses for health professionals Creation of new tools for diagnostic assessment Consensus conference on SLD (in , revised in 2010) Recommendations for clinical practice A specialized scientific journal (Dislessia, edited by Stella and Savelli, )

The result of these activities is a growing awareness in italian society about the needs of DYS people This has led to: Temporary norms and indications for schools by the Ministry of Education and the local education authorities Campaigning for a specific law giving a greater protection to dys students

Lobbying If 3% of people are dyslexic… We can estimate that 3% of members of parliament, employers, teachers, administrators etc. are dyslexic or have a dyslexic relative: We must find them! The unwritten story of how the law was passed shows that this is true!

The law about dyslexia and LD Law n. 170 “New norms regarding specific learning disabilities at school”

XIV legislature SENATO DDL Basile et al. (2002) CAMERA DDL Parodi et al. (2004) A long history…. The first draft law was presented in 2002, but the amount of time needed for discussion procedures prevented it being passed.

XV legislature SENATO –VII comm. Cusumano Barbato Aciutti et al. Franco, Asciutti et al. passed 20/06/07 CAMERA Fabris et al. Formisano et al. CAMERA Discussion begins october 2007 End of legislature april 08….

XVI Legislature SENATO – VII Comm. Asciutti, Franco et al passed 19/05/09 CAMERA – VII Comm. Formisano et al. Napoli et al. Ghizzoni,Barbieri et al. passed 09/06/10 SENATO Asciutti, Franco et al Finally passed 29/09/10

The law n. 170 “New norms regarding specific learning disabilities at school” 1. Acknowledgment and definition of dyslexia, dysgraphia, dysortographia and dyscalculia 2. Objectives 3. Diagnosis 4. Teacher training 5. Learning support

The law n. 170 “New norms regarding specific learning disabilities at school” 6. Provisions for the family 7. Implementation 8. Special statute regions and autonomous districts 9. No changes in public spending

procedures for detection of suspected SLD cases specific teaching support special report to the family diagnostic work up diagnosis diagnostic certificate communication to the school appropriate dispensatory measures, compensatory tools; didactic flexibility and personalized testing SCHOOLFAMILYHEALTH SERVICE evaluation request persistent difficulty

A new era? A qualitative shift in the management of DYS people depends upon New norms …. Now we have them New culture in school and society…. Not yet enough.