Léo* has lost count of the number of refusals. For four years, the 29-year-old, who suffers from a joint disease, has been fighting to get an assistant. “All the movements that require range of motion, like washing or cooking, hurt me a lot,” he sighs. However, despite the certificates from several doctors warning about the “deterioration” of his condition, the Morbihan Departmental House for Disabled People (MDPH), the structure responsible for granting aid, has never followed up on his requests. “I received only one phone call to assess my needs, which didn’t last more than ten minutes. Today, without my partner, I would stay on the couch all day,” he laments.
Victoria* didn’t get an explanation either. Her psoriatic arthritis, diagnosed by two specialists, didn’t give her any rights, despite the repercussions on her professional life. Furious, she went to the MDPH of Bouches-du-Rhône at the end of 2023 to physically file her appeal. “The receptionist, who doesn’t know my file at all, told me that I probably wouldn’t get any help. According to her, I was already surviving with my self-employed business,” she says.
These testimonies are far from isolated. On a Facebook group launched by Yves Mallet, member of the association Coordination handicap et autonomie, 42,000 registered users discuss daily the difficulties they encounter with the MDPH, present since 2005 in each department. “What comes up most often are decisions taken without any exchange with users, or the failure to transmit their personalized compensation plan, a document that details the evaluators’ proposals and then allows, if necessary, to defend one’s rights,” explains the activist.
Tighter budgets
It must be said that the MDPHs are faced with an increase in requests: the number of beneficiaries of the allowance for disabled adults (AAH) has increased from 997,000 in 2012 to 1.3 million in 2022 according to Drees, the research department of the Ministry of Health. But the staff numbers have not kept up: “90% of these structures are understaffed”, specifies Maëlig Le Bayon, director of the National Solidarity Fund for Autonomy (CNSA). With very concrete consequences on the ground: “We are so overwhelmed that we only carry out on-site assessments in the most serious cases”, acknowledges Victor*, an assessor in the south of France.
Although difficulties have always been present, the gradual increase in the funding of aid by departments has not helped matters: 70% of the expenses related to the disability compensation benefit (PCH) – the allowance that includes human aid – are now their responsibility, compared to 40% in 2009. However, the budgetary situation of the general councils has continued to deteriorate, and the time has come to make savings. “Evaluations are now made based on costs and not needs”, denounces Malika Boubékeur, national advisor for access to rights within the Association of the Paralysed of France (APF).
Elise Joussemet knows something about this. This mother, suffering from several chronic illnesses, uses a wheelchair and can no longer perform basic tasks such as cooking or washing. While she had been receiving ninety-eight hours of human assistance since 2018, the MDPH du Rhône halved her hours in November 2022. However, her state of health has not improved at all, as several medical certificates attest. In the process, Elise calls on the department on social networks to obtain explanations. “Your PCH has been revised downwards. Indeed, as explained to you [l’évaluatrice]the law does not allow the use of allocated hours for household chores, shopping, laundry […] as you did before,” the Rhône autonomy service replied in a letter.
“The assessor used this pretext, omitting that the PCH must take into account meal preparation and dishwashing,” comments Elise, who has filed three appeals against the MDPH. “In the end, I sometimes have to choose between washing myself or cooking for myself, because I no longer have enough help.” In the same letter, the Rhône autonomy service suggested “departmental home help” and referred her to the Social Life Support Service (SAVS) for managing her daily life. “But home help is conditional on a resource ceiling that my adult disability allowance exceeds, and the SAVS is not there to help me cook,” concludes Elise. When questioned on this subject, the department took responsibility: “If the national ceilings are exceeded, the home help is the user’s responsibility.”
Absurd assessments
In some MDPHs, processing times are also exorbitant: almost a year for an AAH in Ille-et-Vilaine for example, far from the regulatory four months. Armelle Billard, elected to the General Council and Vice-President for Disability, defends herself by mentioning an excess of zeal of the teams responsible for the evaluation: “They aimed for ‘over-quality’ and did not trust each other enough. When they had a doubt about a case, some asked the opinion of other colleagues, which further lengthened the evaluation process”, she explains, before specifying that a “restructuring” has taken place since Covid, to make these professionals more “versatile”. “There is little risk in any case, because the user can always appeal”, she seeks to reassure.
But for many applicants, the reality is very different. This is demonstrated by Samy*, the father of a child with epilepsy syndrome. In 2019, the pediatrician recommended a home care service (Sessad) to him, given the two-year waiting list to join a Medico-Psycho-Pedagogical Center (CMPP). However, the MDPH of Ille-et-Vilaine refused, without even seeing the little girl, on the grounds that “her needs do not require referral to one of these systems”, and invited Samy to “continue the process with the CMPP”. A year later, after an appeal, the decision remains the same: “Sessad refusal: premature request, get back in touch with the CMPP to set up follow-up”, we can read in a terse letter. “My wife became depressed, and I found myself without help. I had to take my daughter to the emergency room because she was becoming more and more violent with us,” says Samy, saddened.
Yves Mallet, who is regularly called upon for cases of this type, is not surprised. “Since the MDPH was set up, there have always been absurd decisions.” Like the assessment of Sophie*, a victim of muscle pain, whose report dated 2022 specifies that she “has no particular difficulty getting around”, despite using a walker. “The assessor simply asked me if I was able to get up on my own. Since I said yes, she didn’t try to find out more,” she laments, also forced to file an appeal, without success.
A timing of daily activities
These decisions, disconnected from everyday life, are confronted daily by users. Particularly in connection with the time limits for human assistance, set in law at one hour and forty-five minutes per day for eating or fifty minutes for “elimination” – the equivalent of going to the toilet. “We would like to get away from this dehumanizing vision where the day of a disabled person is divided into acts of survival”, criticizes Odile Maurin, founder of Handi-Social. In 2013, her association mobilized against a guide from the CNSA, intended to help MDPHs to assess “more finely” the needs of users. Taking the form of an Excel spreadsheet, the latter counted, among other things, five minutes to eat breakfast or two to go to the toilet. Drinking, too, was limited to two minutes, maximum five times a day.
Although this guide was officially withdrawn in the wake of this, it would still remain a “reference point” according to several employees of the MDPH du Nord, the largest structure in France. “It is not something that is used by everyone. But some assessors are more “strict” than others, and stupidly apply what the texts say,” explains Damien*, an assessor at the establishment. In 2023, Florian Deygas, former vice-president of the National Consultative Council for Disabled People – the body that supports public authorities in developing disability policies – also had to deal with this “protocol” vision. After asking for human help because of his multiple sclerosis, the assessor from the MDPH des Landes visited him six months later and stated that he had not been “disabled long enough”. The guide for the allocation of the disability compensation benefit, in fact, indicates that “the difficulties [du demandeur] must be permanent or of a foreseeable duration of at least one year.” “It had been ‘only’ four months since I could no longer cook or carry my son, so she completely ignored my situation,” he recalls. In the aftermath, the father burst into tears, but the professional remained impassive, suggesting that he was perhaps suffering from a “minor depression.” “I still managed to get human help, but there is a chance that my position played a role,” Florian Deygas analyses retrospectively.
A purely economic logic
Within the MDPH of the North, another measure has recently given rise to a mobilization of agents: the upcoming transition from two assessors to one, for the processing of each file. “Assessing alone is much less ethical. The other day, for example, I came across the file of a man who was eligible for a parking card, but whose application was refused by my colleague, without explanation”, reports Maxime*, an assessor. This new organization, “absurd” according to him, is all the more surprising since “the deadlines in this department are good”, with an average of four months for an AAH application, recalls the professional.
From 2019 to 2023, the MDPH of the North had also set up a “PCH mission”, the name of a section responsible for reviewing the proposals of the evaluation team. The stated objective: to reduce the number of beneficiaries of the disability compensation benefit, as well as the human assistance times allocated. “Its members did not consult the evaluators or the users concerned to make their decisions. We were purely in an economic logic”, denounces Maxime. In a summary note, consulted by L’Express, the department even boasts of the result: “Out of 100 requests for urgent PCH (an accelerated procedure), 70 were accepted and 30 were refused before the creation of this mission. [Désormais]the PCH mission refuses 70 and retains 30”. Contacted, the MDPH of the North did not respond to our requests.
* Names have been changed.
.