Lobbying and Campaigning for Solutions : the case of the battle for a law on LD in Italy Enrico Ghidoni, MD Associazione Italiana Dislessia ghidoni. enrico@alice. it
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
1 1998 BOLOGNA First Congress of AID LA DISLESSIA ESISTE ANCHE IN ITALIA? Does dyslexia also exist in Italy?
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
Parents Family DYS Children Adults ACTIVITIES OF AID ACTION OF AID teachers School headmasters Neuropsychiatrist Media Health professionals Parliament Senate House of Representatives Ministry of Education Psychologist Speech therapist Disability Department
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 200607, revised in 2010) Recommendations for clinical practice • A specialized scientific journal (Dislessia, edited by Stella and Savelli, 2004 - )
• 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”
A long history…. XIV legislature 2001 -2006 • SENATO • DDL Basile et al. (2002) • CAMERA • DDL Parodi et al. (2004) The first draft law was presented in 2002, but the amount of time needed for discussion procedures prevented it being passed.
XV legislature 2006 -2008 • • • 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 2008 - 2013 • SENATO – VII Comm. • Asciutti, Franco et al • passed 19/05/09 • SENATO • Asciutti, Franco et al • Finally passed 29/09/10 • • • CAMERA – VII Comm. Formisano et al. Napoli et al. Ghizzoni, Barbieri et al. passed 09/06/10
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
SCHOOL FAMILY HEALTH SERVICE procedures for detection of suspected SLD cases specific teaching support persistent difficulty evaluation request diagnostic work up special report to the family diagnosis certificate appropriate dispensatory measures, compensatory tools; didactic flexibility and personalized testing communication to the school diagnostic
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.
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