The bitter anniversary of severely dependent disabled people
From the age of 21, incompatibilities multiply for people with severe intellectual disabilities to the point that families say they are left in poverty.
BarcelonaThe 21st birthday for a person with a severe intellectual disability is usually a critical moment, because from this age onwards, the schooling stage ends and working life or day centers begin. At this point, the person usually loses the routine of attending class, with the same classmates, teachers, and monitors, and enters a world of adults, although they continue to require permanent attention and care, which falls entirely on the family.
They are very dependent individuals, who present an intellectual disability, a severe behavioral disorder, or severe autism, situations that often coincide. The problem for families is that, from the age of 21 onwards, their children are left outside the system that has protected them – more or less – since birth and they find themselves with the chaos of incompatible services and benefits, which make day-to-day life even more complicated. The administration believes that, if as adults they attend day centers, special work centers, or occupational centers, families should no longer receive all the planned financial aid because in a way they are attended to for a few hours.
Pep, the son of Montse Nieto, has already entered this phase, and upon entering an occupational center, his dependency aid has automatically been halved, down to 150 euros. The occupational center is a social service where users neither get paid nor contribute to Social Security, and, on the contrary, they have to pay 90 euros per month, an amount that is deducted from the benefit.
Law 39/2006, on dependency, establishes a system of incompatibilities that with the reform being processed in the Congress of Deputies, it is hoped can be eliminated. But until then, the life of a person with a severe intellectual disability is a litany of bureaucracy and obstacles, complains Nieto, a member of the Union of Mothers in Functional Diversity. Dincat, the entity that groups employers and families with people with intellectual disabilities, considers that the incompatibilities “are a drama”, and so describes them Ana Ribalta, who wears the double hat of vice-president and mother of a 24-year-old young man with autism.
One or the other
With the law in hand, it's a choice between money and home care (SAD). And also between attending an occupational center, a day center, or a special work center, which in the latter case is only suitable for people who are capable of maintaining work schedules and routines and who earn around 7,000 euros annually. Nieto considers it completely unfair that one has to choose between the scarce services and the meager economic benefits included in the public portfolio, which has not been updated for years. “It doesn't take into account that you have to be attentive to the children, that you have to take them and pick them up, that on weekends families are alone”, states Ribalta. Nieto points out that, furthermore, these are children you cannot leave at friends' or relatives' homes, or at least not as often as when there is no disability, because they need special care or demand high doses of patience or know-how. “My son would already like to spend more time with people his age and not go with us everywhere, but you don't dare to give the responsibility to anyone”, indicates Pep's mother. The Dincat representative points out that families do the math and may end up foregoing occupation or day centers to avoid losing financial aid, with all the socialization damage that entails.
The other major incompatibility is the non-contributory disability benefit, which is 629 euros per month for people with more than 65% disability and 943 euros for those with more than 75%, and which invalidates the child benefit, the orphan's pension, unemployment benefits, or the minimum vital income. It can only be supplemented with a salary below 7,300 euros annually. Furthermore, if the family's income exceeds 50,000 euros, the right is also suppressed.
The two mothers agree that, nowadays, the system is governed by an “assistance” spirit, which ignores the right of people with disabilities to lead a dignified and autonomous life as much as possible. “We have so many wars now that we can't consider what will happen when our parents are no longer here,” admits Montse Nieto. For her part, Ribalta points out that neither the benefits nor the incompatibility regime take into account the cost of disability, nor how visits to specialized services outside the free catalog (dentists, occupational therapists, insoles, orthopedics, etc.) skyrocket, nor the price of adapted transport, let alone the possibility of enjoying leisure time.
If a public place in a residence, a supervised apartment, or an occupational workshop is obtained, the Generalitat calculates the co-payment and reduces the benefit to about 200 euros. In a way, although Ribalta admits that this incompatibility makes some sense because a place in one of these services is very expensive, the beneficiary is condemned “to absolute poverty”, points out Ribalta.
Claims for undue payments
On the other hand, Nieto has received a letter from Drets Socials in which he is being asked for 702.29 euros for undue payments, as the benefit was not adjusted to incompatibilities. Recently, the ministry had announced the forgiveness of the debt to beneficiaries of dependency who have collected higher amounts if it was due to an administrative error and, when questioned by this newspaper, they respond that the letters are due to the system's slowness in stopping the dispatch once the order was approved.