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Senate hearing on the disability budget PLFSS 2023

On October 21, 2021, Capucine Lemaire, President of the Observatory of Disability Policies was auditioned by Senator Sophie Tallié Polian, as part of the PLFSS 2022 and the disability budget.

"Senator, I thank you for this proposal for a hearing on the social security financing bill 2022, for the disability budget.
I will comment on the proposals for this budget, item by item and in the order of this funding bill.
The commitments of the interdepartmental committee on disability of July 2021

1. A major financial commitment to upgrade the AAH (adult disability allowance)

We note that the AAH has indeed been revalued, an increase of 25%, its amount going from 819 euros in 2018 to 903 euros on April 1, 2021.We recall however that the poverty line is 1041 euros in France according to the latest figures of the INSEE. Thus this progression is below this threshold and proves to be insufficient in this sense. A progression approach must be assessed against this threshold, not the starting amount, to be considered “significant”.
We deplore keeping people in poverty with full knowledge of the facts. Of course, we are talking about monitoring public accounts in the midst of a health crisis, but it is essential to give priority to the dignity of people and therefore it is expected to be proof of intent.
This increased allowance would be the most important significance.
However, this allowance as a minimum income is refused: whereas it is the case in Spain which presents a main allowance as a minimum income, to which is added compensatory allowance for third party or transport.
And in the meantime, in Belgium, such an allowance, even if not considered a minimum income, is 1071 euros, when it is already 1352 euros in Luxembourg.

Therefore, we recall that sufficient resources and means of compensation to live independently and above the poverty line is a right, recalled by the defender of rights, the secretary general of the CNDCH (National Consultative Commission on Human Rights) by Jonas Ruskus, rapporteur at France’s last hearing before the UN Committee on Human Rights last August.

2. The reform of taking into account the spouse’s income for the benefit of modest households.

This is a reform that obviously distracts attention, after the rejection of the deconjugualization of the AAH in the framework of the bill proposing various measures of social justice.
It was a question of not taking into account the spouse’s income for all recipients. This reform is therefore akin to a tinkering, in order to minimize the proven contempt of people and their autonomy.
This approach could nevertheless be significant, if and only if it concerned all the households concerned by the AAH, the amount of which depends on the income of the spouse. This would not be to deconjugualize, but would certainly calm a resentment shared by all people with disabilities in France, and their families.
Deconjugualization remains, in the state of the political will of this government, the only way to advance towards financial autonomy of people.

The Reaffirmed Work Support Service (ESAT);

What the ESAT is funded for (if we refer to Circulation 60AS) is to allow the person with a disability to return to an ordinary environment.
This circular states that these are “transitional institutions”.

There are two problems here:
- people in HS who can only work very little
- people in HS who could go to the ordinary environment, but who make the company work.
Thus, the budget to assist the return of people who had gone to work in an ordinary environment
reflects the difficulties of companies in adapting to the diversity and neurodiversity of employees.

The funding budget for the ESAT transformation fund, on the other hand, reflects the government’s lack of political will to help businesses adapt.
So we find that people with disabilities are being asked to adapt to the mainstream environment, not the other way around. Secondly, we believe that these budgets should be used to adapt the environment of ordinary businesses, with consultations by sector.

Disability as a five-year priority

1. Supply Transformation

Support for the parenthood of people in HS is an excellent initiative with the creation of the PCH (disability compensation benefit) on January 1. However, we want to draw attention to the fact that parents of children with disabilities, who are caregivers, also expect recognition.

According to the study of the research directorate, studies, evaluation and statistics of November 2020, parents of children with disabilities have a less favorable situation in the labor market and lower living standards. Of course the AEEH (education allowance for disabled children) compensates for the costs of education and care, but no allowance compensates for a loss of salary or even a lack of salary.

Because DRESS specifies that it is more frequent that at least one parent does not work. They are most often mothers: they are 2.5 times more often inactive than other mothers, in order to be able to look after their child. And when they manage to work, they are most often part-time - 42% against 31% of mothers without disabled children.

This less favourable situation of parents of disabled children leads to economic fragility and in 24% of cases, AEEH beneficiaries live below the poverty line. The urgency of recognizing the status of caregiver is obvious and compensation must be considered to get these families out of precarious situations.

Thus, the PCH could be extended to these parents, or at least to the most fragile at first.

2. The MDPH support plan (Maison Départementale pour les Personnes Handicapées);

the improvement of deadlines

This is an emergency plan that, according to the 2022 roadmap, must improve timelines, procedures and the deployment of rights in order to make life easier for families.
However, the urgency for families is to reduce the processing gap from one department to another. Inequality remains within the MDPH system and reinforces the feeling that many families experience arbitrary procedures.
The eight flagship projects of the roadmap echo the 2019 Court of Auditors report, which described the decision-making procedures of the MDPH commissions as «mass processing». Indeed, this report specified that the meetings devoted 5 to 20 minutes per file and found that there were about 1100 decisions per meeting.
According to this roadmap, the online service does not give us any more guarantee of humanizing the reception and the decisions taken. Even less so the so-called delay guarantee, in fact.
Obviously, the families want a reasonable time, but there is nothing here that concerns us about the quality of the procedures, which cast a spell on their lives.
We propose that the proposed budget be used to further support, and as highlighted in the 2019 Court of Auditors Report, MDHPs in their significant difficulties in recruiting and retaining physicians, who are heavily involved in the investigation of family files.

Further deployment of the national autism strategy

1. Expanding Early Detection and Intervention Platforms

These BCPs effectively accelerate diagnostic and early intervention approaches. They turn to parents for a coordinated search for a location as soon as possible. However, detection also occurs most often during the first year of schooling of the child, and it is most often also the school that is confronted with these situations.

Since schooling is compulsory from the age of 3, we propose that these PCO emanate from the National Education systematically during the first year of schooling in small section of kindergarten , via the liaison notebooks, by posting or information meetings. It is a way to communicate about rights and procedures and it is also a way to avoid self-censorship of families; which is part of the difficulties of early identification precisely.

2. The supply of schooling

This is a crucial point about a country’s disability policy intent. First of all, I remind you that in Italy, Spain, Sweden, Norway, Iceland, Portugal, 100% of children with disabilities go to ordinary school.

The school is the heart of our society and it is for us, at the observatory, one of our work priorities by 2030. We want a school that is accessible to everyone, regardless of disability, and we are working on the specific and complex issue of multiple disabilities.
The units of autism education in France seem to us to be the driving force of a system that promotes inequalities, while the exact opposite is wanted. An inequality between autistic and non-disabled students, of course, and an inequality between students with disabilities.

Why the EU for autism and not Down syndrome or DYS?

France divides pupils into units, and this is a fact of discrimination, and even more organized into units, it is a fact of segregation. And I speak under cover of the experience of the specialized educators and AESH who are part of the scientific committee of the observatory.

Because let’s be precise, today in primary class of Ulis, to access the 6th Ulis, it is the level of CE2 which is recommended - by the teacher referent of the MDPH; level CM2 for the end of the 3rd. Under these conditions, students are ready to leave school, more or less in the long term, thus to a life parallel to the IMS; or leading to learning most of the time.
It is therefore the school that prevents these students from choosing their lives, while its vocation is to enable them to realize their potential.
It is an integrative vision that sees the child as having to adapt, even as the training offers of teachers and speakers remain subject to volunteering and in any case remain devolved to AESH, untrained, underpaid and precarious.

Therefore, the budget proposed here should more certainly benefit from the need to:

-training of all those involved in the whole school on disability,

-systematic training of new and existing teachers so that they

become specialized teachers by 2030.

-training of AESH, upgrading of their salary and status, recognizing their


We can no longer imagine a school that would negotiate, depending on the type of disability or the number of students with disabilities, support in learning. This must be a guarantee. Because all children with disabilities have the right to the same schooling, in the same place, with other children, in an ordinary environment. In real ordinary milieu, that is not organized into segments
types of people.

Thank you. "

Capucine Lemaire

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