The bitter anniversary of dependent elderly people

BarcelonaThe 21st birthday for a person with severe intellectual disability is usually a critical moment, because from this age the schooling stage ends and the working life or day care 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, even though they continue to require permanent attention and care, which falls entirely on the family.

They are very dependent people, 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, their children are left outside the system that – more or less – has protected them since birth and they find themselves in the chaos of incompatible services and benefits, which make daily life even more complicated. The administration understands that, if as adults they attend day care centers, special work centers, or employment centers, families no longer have to receive all the expected economic aid because in a way they are looked after 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 great disability is a rosary of bureaucracy and obstacles, complains Nieto, a member of the Union of Mothers in Functional Diversity. Dincat, the entity that groups together employers and families with people with intellectual disabilities, considers that incompatibilities “are a drama,” and so qualifies them Ana Ribalta, who wears the double jersey 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 matter of choosing between money and home care (SAD). And also between assistance at 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 is not taken into account that you have to be attentive to the children, that you have to take them and pick them up, that families are alone on weekends," states Ribalta. Nieto points out that, moreover, they 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 require high doses of patience or knowing how to handle them. "My son would like to spend more time with people his age and not go everywhere with us, but you don't dare to give the responsibility to anyone," indicates Pep's mother. The head of Dincat points out that families do the math and may end up foregoing occupational or day centers to avoid losing financial aid, with all the detriment to socialization that this entails.

The other major incompatibility is the non-contributory incapacity 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, orphan's pension, unemployment, or 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 revoked.

Both mothers agree that, at present, the system operates under 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 battles now that we cannot 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 regulations 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.

In case of obtaining a public residency place, supervised flat or occupational workshop, the Generalitat calculates the co-payment and reduces the benefit to about 200 euros. In a way, although Ribalta admits that this incompatibility makes 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 Social Rights requesting 702.29 euros for undue payments, as the benefit was not adjusted for incompatibilities. Recently, the department had announced the forgiveness of 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 reply that the letters are due to the system's slowness in stopping the sending once the order was approved.