#2025-138Law to Improve the Care for ALS and Other Serious Progressive Diseases
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This law amends the Social Action and Families Code to establish a framework for the identification and compensation of individuals affected by rapidly progressing diseases that cause severe and irreversible disabilities. It establishes a new article that mandates the Departmental Houses for Disabled Persons to recognize these compensation requests and work alongside designated centers of reference for rare diseases. Additionally, it allows for personalized support and adjustments to compensation plans based on evaluations from qualified centers.
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Key Changes
- Introduction of Article L. 146-7-1 to identify and process claims of individuals with rapid progression diseases causing severe disabilities.
- Modification allowing individuals above a certain age with severe disabilities from such diseases to receive compensation.
- Requirement for designated reference centers to evaluate claims and propose necessary adjustments to compensation plans.
Obligations
What this law requires
Departmental Houses for Disabled Persons (MDPH) must identify compensation requests from individuals with rapidly progressive diseases causing severe irreversible disabilities at the time of submission
The health and disability ministers must establish and publish by decree the list of rapidly progressive diseases causing severe irreversible disabilities that qualify for compensation under this law
MDPH must organize the processing of compensation requests in partnership with designated rare disease reference centers whose expertise covers the qualifying pathologies
A multidisciplinary team member must propose to the Commission for Rights and Autonomy (CDAPH) the attribution of rights, benefits, and adaptations to personalized compensation plans based on evaluations from designated rare disease reference centers or medical prescriptions when requested by the person
The CDAPH Commission must rule on the attribution of rights, benefits, and plan adaptations at its first meeting following receipt of the request for individuals with qualifying rapidly progressive diseases