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In this month of March 2021, the work of the departmental houses of disabled people (MDPH) has screened ... On the one hand, the CNSA (National Solidarity Caisse for Autonomy), in its last barometer, observes a "lightimprovement ”, in particular with the granting of more life rights, even if it is accepted that difficulties remain (article in connection below).On the other, the Handi-Active collective explores the user side via its "MDPH and you" survey, conducted on social networks and with associations.In two months, 980 families, 95 % as parents of disabled or sick children, answered no less than 75 questions.The verdict is less nuanced.First observation: deadlines for processing files by MDPH remain "incredibly long when a vital need (displacement, hygiene, implementation of a means of communication) is at stake".60 % of families have waited for more than six months and 7 % more than a year!To compare, the CNSA barometer mentions an average duration of 4.2 months at the end of 2020 (compared to 4.6 months in 2019).

Loss of purchasing power

It is then the money that is at the heart of the concerns.Thus, 85 % of parents believe that their child's handicap has seriously decreased their standard of living, half ensuring that they have lost between 30 and 50 % of their income since the diagnosis.Thus, only 13 % were able to keep a full -time job.More alarming figure: one in three caregivers had to stop working completely to take care of his disabled child.An even more worrying phenomenon for single -fed single -parent families."If a compensation system is put in place, it struggles to thwart the disastrous effects of disability on the family budget", deplores the collective.This survey also observes that many families with a minor child, that they have opted for PCH (Disability compression provision) or AEEH (education allowance for the disabled child), do not benefit from the amount ofcompensation to which they are entitled and therefore find themselves "injured".

Too much dependent remains

The point deemed the "most problematic" is that of large dependent remains on technic aid.84 % of the parents who called on the MDPH were there in their pocket, even after taking charge via the PCH and the compensation fund.For 40 % of them, it equals or exceeds 35 % of the price of technical aid regardless of its cost.Families with a polyhandicapped child are particularly concerned.For example, all handicaps combined, the dependent remains for the development of the home exceeded 20,000 euros for one in ten family.To meet these expenses, 58 % had to draw on their own resources.The others have created an association or organized events to collect funds (18 %), obtained from aid from specialized associations (12 %) or solidarity funds for mutuals, pension funds, CPAM(6 %).According to the collective, this poses an "problem of equality between families", between those who have a "good" mutual or a "good" pension fund and the others."The administrative overdose that wins families and pushes them to give up as well as the lack of information may also be important brakes," he observes.

Non -successful requests

Finally, this survey shows that all requests for technical help do not succeed;Thus, 48 % of families receiving the AEEH and its supplements were refused care."However, for a file to be discussed in committee, it must be complete, with the argument of professionals who follow the child and the ordinances.It is therefore unlikely that these requests are unfounded, ”the collective is surprised.In this area, "MDPHs do what they want" and it depends on the "departments policy", he continues, noting that "refused" technical aids are often the most innovative or, more and more, thosepartially reimbursed by health insurance (according to the LPPR or list of reimbursable products and services).He therefore encourages to "review all LPPR codes to adapt them to new technologies".Another situation deemed "ubuesque": the "conflict" between two technical aids having the same LPPR code (armchair hull, car seat or toilet) which the child needs the same year, for example when he grew up."What to favor?"Installation on the toilet or chair, safety of travel by car?What parents should this kind of choice make?», Indignant the collective.According to this survey, 43 % did it at least once ...

What solutions?

Drawing numerous lessons from this survey, the Handi-Active collective offers avenues for improvement to protect and relieve families.First of all, better inform them about their rights in a context where the information, complex, is difficult to obtain, by offering for example a clear and educational letter attached systematically to each decision.But also to raise awareness among MDPH agents or the solidarity funds of pension funds and mutuals.It also encourages to simplify certain devices, for example by applying a single time price for human aid of the PCH family caregiver.Other ideas?Increase the PCH Ceiling Technical Aid, currently 3,960 euros.And why not develop equipment for multiple uses?60 % of families say they are interested in rental and 85 % by reconditioned technical assistance and guaranteed.Final claim: that the government undertakes to limit the remains for these vital technical aid to 10 % of their maximum amount!

The government in phase?

Will they be heard?Recall that, at the end of January 2021, the government installed the steering committee for improving access to technical aid (article in connection below)."Today, benefiting from technical aid adapted to the person's life project is the case of the obstacle course, it is not acceptable," deplored Olivier Véran, Minister of Health.To change the situation, he announces an "ambitious reform" in order to "reduce the dependent remains, accelerate funding, offer quality technical aids, embarking on a circular economy and offering training adapted to professionalswho intervene in this course ".Reasons to hope?

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