THE ESSENTIAL
- The survey was conducted among 3,579 adults with Parkinson’s disease, including 3,087 patients and 492 caregivers.
- 30% of patients surveyed have recognized disabilities.
Parkinson’s disease is the second leading cause of motor disability after stroke. However, 70% of people suffering from this neurodegenerative condition for more than ten years do not benefit from a recognition of disability. This was revealed by a survey, carried out by Opinionway for the France Parkinson patient association, presented on March 24 at a press conference.
“If this recognition is not necessary in the first years of the disease, the neurodegenerative nature of the pathology necessarily induces a loss of autonomy in the long term”, the association said. According to France Parkinson, five factors can explain this lack of recognition, without however justifying it.
1 / The age limit for recognition of disability
The association specifies that the age limit of 60 years immediately excludes adults who have been diagnosed after 60 years. “The latter will no longer be able to obtain the status of disabled person granted by the Departmental House of Disabled People. We then speak of a loss of autonomy linked to old age, while the appearance of the disability is in no way correlated to the age of the person, can we read in the survey.
2 / No systematization of procedures
The survey reveals that the evolving nature of the loss of autonomy prevents any systematization of procedures. Unlike a disability related to a stroke, a road accident or a neuro-developmental condition that occurs immediately, the onset of disability related to Parkinson’s disease is gradual but also random, depending on the effectiveness of treatments or the degree of damage to the pathology.
3 / The complexity of administrative procedures
The procedures for asserting the rights of patients suffering from this neurodegenerative condition are administratively complex. According to the association, patients do not necessarily have benchmarks in the field of disability and medico-social in general.
4 / Denial of the disease by patients
“There is a form of denial in some patients, the acceptance of the disability being equivalent for them to a form of giving up the fight against the disease. This prevents them from starting the often long administrative procedures which are necessary for the recognition of the disability”explains France Parkinson.
5 / Different practices from one department to another
The survey specifies that the practices of the Departmental House for Persons with Disabilities may vary from one department to another. Result: several claimants encounter difficulties in asserting their rights with this organization, depending on their place of residence.