My process of getting personal disability benefits took four years. I was rejected twice by the first degree and twice by the second degree commission because they only looked at the diagnosis and not the symptoms, he tells Center for Investigative Journalism of Montenegro (CIN-CG) suffering from multiple sclerosis, who wished to remain anonymous.
Multiple sclerosis - Expanded Disability Status Scale (EDDS) 6,5 is defined in Article 10 of the Rulebook on Medical Indications for Exercising the Right to Material Security, Care and Assistance Allowance, Personal Disability Allowance and Earnings Compensation for Half-Time Work (Rules) -100 XNUMX percent.
"In addition to exercising the right to care and assistance from others, the Ordinance also guarantees personal disability benefits, which are almost unattainable for multiple sclerosis sufferers, especially because the Ordinance is most often not interpreted, but strictly applied according to the names of the diseases and damages that are listed ", says the president of the NGO Multiple Sclerosis Association of Montenegro (UMSCG), Andrijana Nikolić.
It indicates that the Ordinance must change because EDSS is set high.
"The front and back of the Rulebook must be considered due to the high scale of 6,5, which describes the patient's condition as being able to walk up to 20 meters, without resting, but with constant bilateral assistance, a cane, crutch or prosthesis. It is clear that patients with a lower scale of 6,5 are essentially dependent on the care and assistance of others," she says.
Even with a damage percentage of 5,0, the patient's mobility is noticeable with help or with rest, after walking 200 meters with a noticeable reduction in daily activities.
A percentage of damage of 5,5 indicates the mobility of the patient, with or without assistance or with rest after walking 100 meters, while the disability is so strong that it completely affects all daily activities.
Damage of 6,0 percent is attributed to a patient who is mobile with the occasional and/or permanent assistance of an orthopedic aid, cane, crutch, prosthesis, walker, and that for a walk of up to 100 m with or without rest.
According to the data of the Clinic for Neurology of the Clinical Center of Montenegro (KCCG), there are about 880 patients with multiple sclerosis in Montenegro, while the number of those who joined the UMSCG is 550.
In order to make it easier for multiple sclerosis sufferers to exercise their rights, the UMSCG submitted a request to reduce the EDSS from 6,5 to 5,0, as a condition for receiving someone else's care and assistance, taking into account the patient's described condition.
"The then Minister of Labor and Social Welfare, Naida Nišić, she clearly expressed her full support for our request, stressing that she understands the needs of multiple sclerosis sufferers because she has a sick person in her family", claims Andrijana Nikolić.
The promise remained. The letter to Minister Nišić was sent by the UMSCG through the Ministry's archives on December 12, 2023. Since she did not speak, they sent a request to convene a session of the Parliamentary Committee for Labor, Health and Social Welfare. At that committee, the minister made a promise that has not been fulfilled to this day.
After the reconstruction of the Government in July 2024, the portfolios were divided. As explained to CIN-CG from the Ministry of Labour, Employment and Social Dialogue headed by Minister Nišić, that area is now under the jurisdiction of the Ministry of Social Welfare, Demography and Family Care (MSDBP).
From that department, they told CIN-CG that the Ministry of Labor and Social Welfare previously formed a working group for the preparation of Proposals for Amendments to the Rulebook..
"The working group includes representatives of the NGO sector and other relevant institutions, who will work on amendments to the current Rulebook. So far, two meetings of the working group have been held, where proposals for improving and supplementing the existing medical indications have been discussed," explained MSDBP for CIN-CG.
Disability allowance as a permanent right
Ever since adoption of the Rulebook, as a by-law of the Law on Social and Child Protection, we point out the fact that this act needs to be amended, after all, like the Law on Social and Child Protection itself. Personal disability allowance must be defined as a compensatory right based on disability, that is, it should be the so-called compensation for inequality", they indicate from the Association of Disabled Youth of Montenegro, of which he is the head Marina Vujacic (UMHCG).
In that Association, they believe that personal disability allowance should be recognized as a permanent right.
"If the law defines that it can be achieved by people with severe disabilities, it means that it cannot happen that a severe disability as such grows into a mild or light one, as long as the state and society, bearing in mind the definition of disability from the United Nations Convention (UN ) on the rights of persons with disabilities, do not remove obstacles and do not provide the necessary support", they explain.
Doctor Ljiljana Radulovic, Zilha Idrizović i Dragana Perović Durković supported the requests of UMSHCG, as well as doctors Jefto Erakovic i Vladimir Dobričanin, with the support of representatives of the competent committee. The rulebook, however, is still waiting for changes.
"We requested that the Ordinance for patients with multiple sclerosis who are working, enable them to work for four hours with full pay, because people are more productive when they work. The condition of many patients who are active at work does not allow five-day work for eight hours a day", explains Andrijana Nikolić.
They asked for several more changes that not only concern multiple sclerosis patients, but also other vulnerable groups of patients who turned to them for help.
Too long procedures for obtaining someone else's care and assistance and personal disability allowance
Procedures for receiving care and assistance from others and personal disability benefits begin with filling out forms at the Center for Social Work, along with submission of the necessary medical documentation, not older than six months.
After that, the meeting of the first-degree social-medical commission, summoning the party and a written notification sent to the party's home address are awaited. The procedure lasts from three to four months. If the commission's opinion and findings are negative, the party in the proceedings has the option of appealing to the second instance body.
"Our practice shows the uneven approach of centers for social work, when it comes to recognizing the right to personal disability benefits," say the UMHCG.
The President of UMSCG Andrijana Nikolić notes that at the same time for patients it is a "long period of anticipation, uncertainty and most often disappointment".
From the MSBPD for CIN-CG they claim that the procedure for obtaining a decision regarding the realization of the right to personal disability allowance does not last for years.
"Citizens submit a request for the exercise of rights to the competent center for social work, after which they are referred to the social-medical commission that evaluates the medical indications for exercise of the right in question. "After the meeting of the social-medical commission, the applicant receives a decision within 30 days that acknowledges or denies the exercise of the said right," they say.
Reform of the disability determination system
MSBPD in cooperation with UNDP implements the project "Reform of the Disability Determination System".
"As part of this project, it is planned to pass the Law on Unified Expertise on Disability, the draft of which has been prepared and sent to the Secretariat for Legislation for an opinion," said the MSBDP.
The goal of the reform is the establishment of unique national criteria and methodology for disability expertise based on the human rights model instead of the currently dominant medical model, as well as a unique specialized institution, the Institute for Disability Expertise. Once received, the decision of the Institute on the status of persons with disabilities will be valid for the exercise of rights in all departments.
"This ensures that persons with disabilities exercise their rights based on an expert assessment of the person's individual situation, as well as the necessary support to overcome the barriers they face in their daily functioning, in accordance with national legislation and the ratified UN Convention on the Rights of Persons with Disabilities." they explain from the MSBPD.
In the existing system, more than 35 commissions function within five departments, among others, the social-medical commission for determining medical indications for exercising the right to the allowance for care and assistance and personal disability allowance, with all departments having their own commissions as well as criteria that are dominant based on a medical approach to disability, illness and health.
The reform of the disability expert system will contribute to the establishment of fairer, more equal and simpler access to rights to financial support and services intended for persons with disabilities.
"The Institute for Public Health (IJZ) continued to provide support in the development of a complex methodology for a unique expert opinion on disability. As a result of consultations and the work of five working groups formed by IJZ, as well as with the support of consultants engaged within the Project, two segments of the methodology were prepared. The first segment refers to the criteria for the assessment of damage to the body and contains a list of damage to the body," said the Ministry of Social Welfare, Family Care and Demography.
The second segment refers to the criteria for evaluating the functional status of a person. It consists of a list of functional impairments, the WHODAS 2.0 questionnaire for adults, as well as a questionnaire for assessing the functioning of children.
Both segments of the methodology were developed in accordance with the international reference methodological framework of the World Health Organization (WHO).
In addition to this, they plan to create the third segment of the methodology, a questionnaire on the required level of support, which aims to ensure the transition to the human rights model. Work on this segment has been postponed until the adoption of the Law in order to adapt to the final approach to the regulation of this area.
"Given that the existing Rulebook relies on a medical approach to disability, while the new methodology is based on the human rights model, we believe that it is a priority to direct efforts towards accelerating the reform of the disability determination system. At the same time, until the adoption of the new Law on the unified expert opinion on disability and the development of the methodology for the unified expert opinion on disability, we will consider continuing to work on changes to the existing Rulebook in order to include a larger number of users with the aim of a fairer and more comprehensive system that better meets the needs of people with disabilities", they conclude from of MSBPD.
"It is not possible to treat equally a patient who can perform all tasks independently, in whom the disease manifests itself in the form of an attack and passes with therapy, relapsing-reminent vision, and a patient with a primary-progressive form who cannot even move on his own, such as is my case," says our interlocutor, who suffers from multiple sclerosis.
Many reliefs are missing
"Multiple sclerosis is an autoimmune disease that affects the central nervous system, has a progressive course, and predominantly begins in the third and fourth decades of life and is more than twice as common in women," explains neurologist KCCG, Ph.D. Ljiljana Radulović.
She explains that multiple sclerosis is one of the leading diseases that causes disability in younger patients in the world.
"In countries that do not have the opportunity to adequately treat patients, this disease significantly disrupts the quality of life from the very beginning," he says.
"According to the numerous researches that have been carried out especially in the last two decades, in which the impact of the disease on the quality of life is investigated, it was established that a certain degree of disability can be established in about 80 percent of patients, and that the quality of life is impaired both in the physical and mental domains. of health," explains Radulović.
The most common psychological disorder in patients is the appearance of depression and anxiety, which are noticed already after the diagnosis, and later in the case of disease progression, these disorders become more pronounced.
"Relationships between partners are also shaken, and according to research, the divorce rate is higher compared to the general population, and the changed social life of the patient definitely contributes to the impaired quality of life," explains Radulović for CIN-CG.
Motor limitation, cognitive decline significantly affect the patient's working abilities, in order to improve working conditions, many countries offer patients different types of relief, such as reduced working hours, extending or timing the break in work with the patient's needs.
Every government should cultivate empathy towards vulnerable categories in every segment of the exercise of power, especially in the legislative system, says Andrijana Nikolić.
"However, both the former and the current government remember the vulnerable categories in the pre-election campaigns and after taking the throne, they forget their pre-election promises", she states.
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