The application of the new disability assessment scheme has caused dissatisfaction among interest groups. About 1,700 people, who previously had disability status, have lost it, leaving them at the mercy of fate. Civil society accuses the institutions of not properly implementing the instructions and violating the agreement on not affecting the status.
Author: Jetmira Delia
For more than a year, Anxela Mersini from Vlora no longer holds the status of “paraplegic invalid”. She was born with thalassemia and over the years her condition has worsened. For this reason, in 2018, Angela received the “paraplegic” status. The validity of this document was 3 years, so in 2021 it was again presented to the Medical Commission for the Determination of Ability to Work, where this time it was subjected to the bio-psycho-social assessment, a new assessment method, which started application in December of 2019.
Faksmile of the card showing that Anxela Mersini had the status of paraplegic (2019-2021)
The answer arrived after two months, specifying that the 29-year-old’s paraplegic status was revoked. The argument was that there are no motor deficits and will be treated as a person belonging to the second group of disabilities, with the diagnosis “thalassemia major”.
Faksmile of the document issued by the Social Service, which removes the “paraplegic” status from Anxela Mersini
As a result of the change in status, Angela has been deprived of the hygiene package of 16 thousand ALL, as well as a payment of 11 thousand ALL for the caretaker (which her mother used to receive). Currently, she receives only a modest allowance of 11,900 ALL, which is completely insufficient to cover her needs.
Her parents say that she has been paralyzed since the age of 16, and the doctors have concluded that it came as a result of thalassemia, which she has had since birth.
“Removing the help we had, at a time when prices have increased, is very difficult for us. The state should help us, not take away the help. In my family, I am the only one who works in the public service enterprise of the Municipality of Vlora. With a salary of 35 thousand ALL, how will I succeed in these conditions? We live in the cabins of the former Workers’ Camp, in difficult conditions”, Vladimir Mersini, Angela’s father, told Investigative Network Albania.
The chairman of the Association of Persons with Disabilities for Vlora, Hysen Muhameti, tells us that apart from Angela’s case, he referred two other cases to the Ombudsman office.
“The status of paraplegic has been revoked from all three of them. I can’t help them more than to refer them somewhere, where I hope they will get a solution, but it is unfair for them to find themselves in this situation”, says Muhameti.
Stuck in the trap of illness and impossibility, there is no one to claim the right to this category, as family members must take care of them.
“They can’t be left alone to wander in the offices. They have to work to provide them with medicines or everything else that they need with the problems they have”, Hysen Muhameti further explains the absurd situation in which people with disabilities find themselves in our country.
For Angela’s case, Investigative Network Albania addressed a request for information to the Regional Directorate of the State Social Service in Vlora. According to this institution, Anxhela Mersini appeared before the First Level Neurology/Para Tetraplegia Commission on August 17, 2021, but her file resulted with “divergences” or “inconsistencies”.
“The file was sent to the commission of the Upper KMCAP and Angela appeared before the commission on 13/01/2022. Decision No. 09 results in “No Group”, so it does not benefit from the status of “Paraplegic” invalid. Currently, she receives payment as a PWD and has not submitted the documentation for the status of paraplegic to the State Social Service Offices to continue with the commissioning”, it is emphasized in the response of the Regional Directorate of the State Social Service in Vlora.
But Angela’s father claims otherwise.
“We had the visit to Tirana in January and they told us that “you will get an answer in Vlora“. When they told me that the girl no longer has the status of paraplegic, I objected. They asked me for new documents, but, as I was doing them, I was told at the Commission near the Health Center in Vlora that “you have no right to appeal, because the decision of Tirana is final and valid for 3 years, until 2024 “, – says Angela’s father.
The new, penalizing scheme
Like Angela, hundreds of disabled people have been left out of the support scheme, having lost their status.
The new reform for bio-psycho-social assessment has unfairly penalized a category that is in extreme need.
The People’s Advocate informs that 7 complaints have been submitted to this institution from Vlora alone regarding the decisions that were taken after the bio-psycho-social assessment for persons with disabilities.
At the national level, the number of “excluded” at the State Social Service is much higher.
“With the extension of the bio-psycho-social model, since 01.01.2020 until now, 1672 complaints have been registered”, says in a written response the State Social Service.
But, how many people were excluded from the support scheme for people with disabilities?
“The number of people with disabilities, at the time when the application of the bio-psycho-social model started, was 72,183 people. Currently, the number of persons with disabilities is 70,490, with the data processed until October 2022 (since the last data have not been processed yet; statistics are processed every 2 months)”, says the response of the State Soical Services.
Referring to these data served by the institution that manages the disability scheme, 1693 people have left the scheme and most of them have appealed the decision (1672). While Angela’s case was submitted, other complaints have not yet arrived at the doors of the State Social Service.
The removal of the status is seen as the main problem for persons with disabilities by the president of the Association of Paraplegics and Quadriplegics, Adivije Hoxha. She accuses that the new scheme is being applied in violation of the instructions of the Ministry of Health and Social Welfare.
According to her, the instruction for the implementation of the bio-psycho-social evaluation was discussed with the interest groups and one of the agreed points was that those who have the pre-tetraplegic status should not undergo the evaluation.
She estimates that it has become a mess, even those who have had the status for years have been penalized.
“How can the status be removed from someone who has had it for years, who lays still, can not dress himself, uses the hygiene-sanitary package, who is not aware? The commissions have made evaluations online , leaving us sitting. There, on the couch, we can look beautiful, but how capable are we of performing basic movements?”, she says irritated.
According to her, even though the pandemic ended a long time ago, the commissions continue to make evaluations online.
“Surprisingly, the commissions continue the online evaluations, even though the pandemic is over. Only at the Upper KEMP, which does not agree with the regional assessment, is necessary to be there physically. For us, this is discriminatory, because they have a lot of difficulties in transportation”, insists the president of the Association of Paraplegics and Quadriplegics, Adivije Hoxha.
Arjon Jakupi was stripped of his “paraplegic” status for 6 months in a row, not benefiting the hygiene package payment, in the amount of 16,000 ALL, but only the payment as a person with disabilities, of the first group (11,900 ALL) and that of to the guardian, which at that time was 10,600 ALL.
In the photo, the card of Arjon Jakupi after regaining the paraplegic status
The mother, Drita, is seeking compensation for the months that her status was revoked, but she does not know which door to knock on.
“I asked to be compensated, but they told me: “Thank God that you got it back so quickly, because others have spent more than a year and still haven’t got it back.” What do I do now? Nor do they direct me where to complain, because, as long as it was returned, it means that an injustice has been done. During those 6 months, the boy should also receive payment for the hygiene package. Where can I solve it?” asks Drita, the mother of the 21-year-old paraplegic.
The Regional Directorate of Social Service in Durrës does not give any answer to the question of Drita.
“For the period October 2021-March 2022, Mr. Jakupi received the payment as “First Group with Guardian” and not as “Pre/Quadriplegic”, since, according to the decisions in this period, it was declared by the commission “First Group” and not “Pre-Quadriplegic Status”. The ongoing payments are in order”, says the Social Service of Durrës without giving a clear answer.
The new scheme, problematic
For the president of the Association of Paraplegic and Tetraplegic Persons, the implementation of the new scheme has highlighted a number of problems, carried over the years. The weak point continues to be the caregiver’s payment, which is 11,500 ALL for 4 hours of service, but they are actually available to the patient 24 hours a day. If they have no relatives, it is very difficult to find a guardian with this payment.
“The employment law is violated by the state institutions themselves. 1 in 50 employees should be a person with a disability, but no one does. This would make us not feel a burden on society, but it would also help us economically. A 7.5% indexation was made for the increase in prices, but it is very little”, says Adivije Hoxha.
The current bio-psycho-social assessment scheme aims to provide financial support to people with disabilities according to the degree of the disease and its complexity. The situation is determined by dedicated, multidisciplinary commissions, which are composed of doctors and social workers.
Those dissatisfied with the new scheme have turned to the People’s Advocate with a flood of complaints. They claim: non-granting of the disability group, change of the disability group, removal of the paraplegic/tetraplegic invalid status and consequently not benefiting from the coverage of expenses for the hygiene-sanitary package, complaints about the commissioning date, etc.
“For all these claims, we have addressed the Medical Commission for the Assessment of Disabilities (First and Higher Levels) at the State Social Service”, says the Ombudsman.
Fatlum Nurja, local government expert, says that during the first 7 months of its application, several shortcomings were observed, from delays in conducting interviews to human rights violations.
“The staff of the evaluation office must carry out the interview within 30 calendar days from the date of receipt of the application documents, which turns out to be late in most cases. The non-implementation of the interview in time for the persons seeking to be reassessed (who are continuing disability beneficiaries), has led to the disconnection of payments for these persons. Delays are not just a few days, but even months”, explains Nurja.
“The interruption of the payment, in addition to being a violation of the legal right of disabled persons, has resulted in the non-benefit of the end-of-year bonus and financial assistance for many people (since these two payments were made only to those persons who were on the December payment list), continues the local government expert.
Referring to his city, Shkodra, Nurja says that, according to his information, only in the list of reassessments of the Municipality of Shkodra (the city, not including administrative units), out of 80 certifications of the Multidisciplinary Commission for the Assessment of Disabilities , forwarded to the Regional Directorate of Social Service, Shkodër at the beginning of January 2023, 29 people are beneficiaries of the months of November-December. If they had been evaluated on time, these people would have benefited from the reward (3000 ALL) and financial support (8000 ALL).
“In the month of January, approximately 300 people left the disability scheme, which had expired in December and were in the process of re-evaluation. Most of these people claim that it had been a while since they submitted the documentation or that they were interviewed in the month of December”, Nurja explains the situation further for Shkodra.
According to him, precisely because of the malfunctioning of the institutions, the payment to this very vulnerable category has been stopped. More specifically, for the persons interviewed in December, the Regional Directorate of Social Services, Shkodra should have sent in the first days of January a copy of the Certification of the KSHVAK (Multidisciplinary Disability Assessment Commission) to the Municipality of Shkodra (thus avoiding payment interruption) and a copy should have been delivered to the applicant to inform them of the decision.
“Another claim of the citizens is that they are not provided with a copy of the certificate from the Regional Directorate of Social Services, Shkodër. So, I believe that this example clearly shows the problems that this new scheme has brought”, says Fatlum Nurja, pointing to some of the problems of the new scheme.
With the bio-psycho-social model of disability assessment, we have 4 types of benefit levels: first level – 7,292 ALL, second level – 9,723 ALL, third level – 12,153 ALL, fourth level – 14,584 ALL.
Fatbardh Kokoti, 63 years old, a resident of the “SMT” neighborhood in Shijak, was removed from his “work disabled” status on May 31, 2020. According to the Multidisciplinary Commission for the Assessment of Disabilities, he is capable of light work. After a year passed from this decision, during which time Fatbardhi could not find an easy job, he suffered a heart attack (January 2022) and was admitted to the “Mother Teresa” University Hospital Center. The committee of 3 doctors, who followed his condition for a month in the hospital, decided that the patient should be assessed for economic assistance (KEMP). Fatbardhi had benefited from the status of work invalid from 2013 to 2022. His wife, Lirie Kokoti, says that because his condition changed, he continued his efforts to secure the KEMP.
Direction sheet for KEMP for Fatbardh Kokoti from QSUT doctors
“The document of the QSUT doctors was not taken into account at all. They brought me the letter, where they said that it is outside the scheme, it does not result in the system. Yes, I knew this, I was asking to be included in the scheme, that the situation changed after the heart attack, now apart from one leg, which had problems from the accident, the other one can barely move”, says the wife, Lirie Kokoti.
“It’s been a year of wandering from Durrës to Tirana, I went 3 times, by taxi of course, because my husband can’t sit in a van, a special car is needed. 3,000 all a taxi, every time we travel. The first time it went like that, we appealed it. On January 18 of this year, we showed up and were told that we need a new heart echo, as if they couldn’t ask us by phone, but we had to go all the way to Tirana,” says Lirie Kokoti.
On February 15, Fatbardh went again to the Social Service in Tirana, where after his condition was reassessed, he regained the status of work invalid.
For a year, Fatbardh did not receive either a disability pension or an old-age pension, while Liria could not start a job, as she had to take care of her husband.
The document that shows that Fatbardh Kokoti does not receive either a pension or economic assistance
Even in Shkodër, there are many who have suffered from this new scheme. Out of 477 people re-evaluated with the bio-psycho-social model of disability assessment during the first 7 months of the implementation of the scheme, about 70% of the people evaluated/re-evaluated with this model result in a reduction in payment.
“Being in a very difficult economic situation, the reduction of the amount of benefit (which previously was 11,915 ALL), has brought a negative impact on the economic and social well-being of these people and limited economic, physical, psychological and social opportunities”, says Fatlum Nurja.
Astri Shiroku, an 80-year-old from Durrës, has been deprived of his paraplegic status for 3 years. His wife, Deliko, shows the difficulties, where the walkers are found at the doors of the institutions in Durrës and Tirana.
Medical document showing that Astrit Shiroku is unable to move and is directed to KEMP
“Three days ago, they called us on the phone from the Upper KEMP with a camera and told the man: “Stand up”. And he, if he stood up, we wouldn’t ask for KEMP. They have the file there of all the illness he has, the medicine he takes. On the phone, will they understand how sick this 80- year-old is? To get up, come and see him at home. He has not come out to see the light of day all this time. We are looking only for what is rightfully ours, I don’t understand, why do they do this?”, Deliko Shiroku rightly accuses.
She confesses that her husband receives a pension of 20,000 ALL, but that’s what all the medicines cost. While she herself takes medicine for high blood pressure, heart.
“Do any of these people think about how we manage? Thank goodness we have children abroad and they help us, from the state we don’t expect anything anymore. How is an 80-year-old’s aid withdrawn? Do they think how long this one will live?”, – says Deliko Shiroku.
As in other cases, the Durrës Regional Office of the State Social Service clarified that the decision to remove the status belongs to the Upper KEMP and they only have to implement it.
“PWD”, hostage of bureaucracies
When there are so many unhappy people, should the evaluation scheme for disabled people be reviewed?
The local government expert, Fatlum Nurja, thinks that the time has come for this scheme to be decentralized. According to him, only in this way will the bureaucracies for this category end.
“This service should be decentralized, as it is a red tape nightmare, and should be dependent on the municipality, where the central institutions should only establish the criteria, standards and procedures, which they should monitor. From monitoring, to assess the situation and then improve what they can”, suggests Nurja.
“It is not possible for people, especially this category, to travel between a plethora of institutions or bureaucracies and the lack of coordination. The sooner it is done, the better it will be”, he concludes.
The Ombudsman suggests that the disability assessment criteria should be revised, expanding it with some new diagnoses.
“We have addressed the Ministry of Health and Social Welfare, starting from the issues that citizens have raised with our institution. We have suggested the inclusion of the diagnosis “paraparesis” in the benefit of the paraplegic and tetraplegic Invalid status, the inclusion of the diagnosis “inferior paraplegia from neurodegenerative disease without sphincter disorders” in the benefit of the hygiene package, as well as the diagnosis “hemiplegia” in the benefit of Paraplegic and Tetraplegic Invalid Status”, – concluded the Ombudsman.
Ky shkrim është pjesë e projektit që mbështetet financiarisht nga Zyra e Mardhënieve me Publikun e Ambasadës së SH.B.A. në Tiranë. Opinionet, gjetjet, konkluzionet dhe rekomandimet e shprehura janë te autor-it/ve dhe nuk përfaqesojnë domosdoshmërisht ato të Departamentit të Shtetit. / This article is part of a project that is financially supported by the Public Relations Office of the US Embassy in Tirana. The opinions, findings, conclusions, and recommendations expressed are those of the author(s) and do not necessarily represent those of the Department of State.