The world will remember Stephen Hawking and his scientific contribution. Maybe not everyone will know exactly what he did, many will still associate that he was the author of "A Brief History of Time", that he studied black holes... In short, they will surely know that he was a brilliant physicist. Hawking was diagnosed with motor neuron disease during his doctoral studies.
In the stories about his life and work, it is always mentioned that with the help of science and medicine he lived a productive and fulfilling life, that although he moved with the help of a wheelchair and could not speak, he was enabled to communicate with the help of a voice simulator. Hawking himself would mention it in the forewords and acknowledgments of his books. But Hawking always used the opportunity to thank the person who was during the writing of the specific title - his personal assistant...
The personal assistance service is recognized in the regulations of Montenegro. However, people with disabilities can still receive services exclusively through the projects of non-governmental and other organizations. The position of assistants is not regulated either, so personal assistants cannot establish a permanent job.
About personal assistance for "Vijesti" the Association of Young People with Handicap (UMHCG), as well as users and persons engaged in personal assistance work, speak. UMHCG recently announced a public call for 10 personal assistants and they explain that only some of the services that assistants can provide are: personal needs of users - dressing, personal hygiene; help in the house - cleaning, washing... and social needs, which include going to work or other type of educational and work engagement, walks, exercise, recreation, travel...
Kristian Camaj has a rare disability and uses a wheelchair to get around. Assistant Martina Sosa helps him transfer from the wheelchair to the bed and vice versa, helps him change his clothes, prepare food, provides assistance with performing exercises, performing personal hygiene, buying clothes, shopping in general, going to the cinema...
"The service of a personal assistant is necessary for me because I want to live and work in a way that is dignified as a human being, so that I do not represent a burden for the family and the social community," said Camaj to "Vijesta".
With a personal assistant, he says, he also has greater privacy.
"Which I could not achieve in the family circle. Life only with the support of the family implies complete dependence on them, so for example they are the only ones who can transport me to a certain place and wait later. This represents an additional obligation for the family, and for me the inability to stay out as long as I would like, or at least a burden that someone is waiting for me", explains Camaj. Together with Martina, Kristian now eats less in restaurants, he doesn't pay for food delivery, because Martina does her shopping in a bigger market, she pays less for groceries, and the selection is bigger, so she chooses the ones that suit Kristian.
"Living independently, that is, using the service, allowed me to better control my personal life - managing my free time and finances. In the end, I learned to make decisions independently with the possibility of making mistakes," he says about his experience.
The support of the assistant also means for Anđela Miličić that she can be more independent in life and not depend on her family. Anđela is from Nikšić, now lives and works in Podgorica. The inaccessible environment is the reason why she needs the services of an assistant.
"I have a physical impairment, and when I need to pay something in a bank or go to a store to buy groceries, I would always first have to find out if that branch/bank is accessible, so if it is not, then I ask which one is accessible and even if it is further from where I live, while I take a taxi from point A to point B, it also represents an additional cost in the financial sense," she says.
With a personal assistant, she adds, she doesn't have to think about how to finish something, how long it will take, whether a space is accessible.
"In that sense, I don't have to exhaust myself. A personal assistant contributes to my quality of life, to be more independent, not to be dependent on others and not to wait for others to do something for me, while on the other hand I have the opportunity to move more, be active... manage my I make my own decisions throughout my life, which I think is very important when it comes to all other disabled people, because expectations from others in this regard are low or non-existent," says Anđela.
Being independent, she adds, means that they can get to know themselves better, their possibilities, expand their potential...
What does the law say?
The personal assistance service is one of the support services for life in the community prescribed by the Law on Social and Child Protection. Although it represents the right of persons with disabilities, such as the right to material benefits, PWDs in Montenegro can either never or with difficulty realize their right to that service before the institutions of the system, to the extent and in the manner in which they need it.
Milica Marđokić from UMHCG told "Vijesta" that the reason for this is that the service is financed exclusively through the project activities of non-governmental and other organizations, so it is available mostly to their members or persons that the organizations find out about as part of their work.
"And for a limited number of people and for a limited time. Also, the amount of salary for personal assistants has not been determined, but when it comes to UMHCG, it varies from project to project", said Marđokić.
In addition to the fact that the state finances the service through project activities, the provider of the service is required to have a license to perform social and child protection activities.
Marđokić says that this makes the service unsustainable and unavailable for all PWDs who need it and meet the conditions for that service.
UMHCG, in addition to the license, also has an accredited Personal Assistance Training Program for professionals and associates at the Institute for Social and Child Protection. That NGO, adds Marđokić, regularly conducts informal training of personal assistants and users about the service itself, its principles, rights and obligations of both parties in the employment relationship...
At the national level, says Marđokić, the training system is not regular and not sufficient. In addition, some providers, she claims, provide services contrary to international standards, and the problem is also because many other services are called personal assistance - a personal companion, help at home, service carers...
"The state does not seem to want to solve such a situation, but instead leaves room for disorder," says Marđokić.
Although they have a legal right to the service, PWDs often pay for a personal assistant themselves. Often limited by finances, she adds, people with disabilities cannot provide an assistant to the extent and for the period they need and depend on family members or, ultimately, institutions.
"That is why they often live in conditions of institutionalization, as such, limited in terms of possibilities and choices for life in the community", says Marđokić and adds that for the same reasons the conditions for independent living of PWDs in Montenegro are not satisfactory, financial investments are unsustainable and without essential effects.
"Because the system still implements the care policy, not creating the conditions for PWDs to become citizens in the full sense of the word." Also, the state does not fundamentally support people with disabilities who have the potential for complete independence," she says.
What needs to be changed
Marđokić says that the financing would have to be taken over by the state and other institutions. Speaking about the practice in some European countries, she said that this service is paid for at several levels - national, provincial, local, the state, municipalities, centers for social work pay for the service...
The UMHCG is of the opinion that personal assistance should be treated by a separate law instead of the Law on Social and Child Protection.
"This service is very specific, which is why it needs a much more regular and detailed arrangement than is the case now. The specific law and by-laws should be significantly changed in many segments, not only the one related to services", says Marđokić.
But, apart from the assistant service, as she said, some other services needed for a dignified and independent life of people with disabilities should be guaranteed.
"Such as the services of a personal companion, a guide/assistant dog, the financing of which should also be taken over by the state, door-to-door transportation, the financing of which should be arranged by local governments, and so on," she says.
According to her, the impression is that the regulations in this area are written more for those who provide services - those who belong to the institutions of the system and public institutions established by the state and municipalities, than their intention is the development of standards, procedures, conditions and financing of services for the disabled.
"Existing standards are restrictive, funding is not secured, procedures and procedures are unclear," she says.
As an example, he cites the article of the Rulebook on closer conditions for the provision and use, norms and minimum standards of support services for life in the community, according to which personal assistance service is provided to the beneficiary of personal disability allowance, care and assistance allowance who is in employment, to the beneficiary who is involved into the higher education system or the adult education system.
"That article is problematic due to the fact that some PWDs who have an objective need for personal assistance cannot exercise that right, because due to restrictive conditions and the application of the medical model of approach to disability, they are not beneficiaries of the right to personal disability allowance or allowance for care and assistance, or they are not students and employees, they are, for example, activists, athletes", explains Marđokić.
It is also problematic, he says, that the ordinance prescribing the issuance of a license for the provision of personal assistance services and other services in the field of social and child protection prescribes formal conditions for issuance, but does not check whether the service is provided in an adequate manner.
"In this sense, we consider it problematic that professional workers at personal assistance service providers are not obliged to go through an accredited training program in this particular field, but can be trained for other services, even fields in a broader sense. Therefore, there is a danger that insufficiently or improperly trained professional staff will not ensure or control the provision of services in a proper way", says Marđokić.
In addition, she adds, it is necessary to change the terminology related to the PWD in the legislation.
"In our regulations, you can still find terms such as children and young people with disabilities and difficulties in development, which is in contradiction with the UN Convention on the Rights of Persons with Disabilities, which only talks about children, young people and people with disabilities, while the by-laws are full of medical expression, although disability is not a health condition, but the interaction of damage (which again does not have to occur as a consequence of a change in health condition) with the surrounding barriers", said Marđokić.
In 2009, Montenegro ratified the UN Convention on the Rights of Persons with Disabilities and, she reminds, thereby assumed all the obligations prescribed by the Convention.
"It is precisely the Convention that guarantees the right to personal assistance, because this service is the only one mentioned literally. After all, how important it is, activists with disabilities often state that it is a service that every person with disabilities will need to some extent at some point in their life... UMHCG will continue to respect international practice in its work and encourage and demand from Montenegrin institutions to they apply the same in their work. As a society, we not only have an obligation to respect international standards and domestic regulations, but also to enable a dignified and free life for every single citizen," said Marđokić. 10 personal assistants will be employed for nine to 12 months through two projects implemented by UMHCG. Applications are still open today, and motivation letter and CV are sent to freedomofchoiceil@gmail.com, with the title "Application for the job of personal assistant"
Without permanent employment until the application of the qualification standard
Martina Sosa's assistant is a hotel and tourism technician, but she retrained for the position of occupational therapist and personal assistant.
When asked what she learned doing that job, she says that she realized that we take the right to freedom and independence for granted.
"Unfortunately, we don't all have equal rights and PWDs have to fight for their independence," she said.
Speaking about the challenges in the job, she said that personal assistant is not recognized as a profession.
"As a result, I, as a personal assistant, am denied permanent employment, and PWDs who need assistance are denied the support they need," she said.
UMHCG also participated in the development of the "personal assistant" qualification standard, which was developed by the Center for Vocational Education in 2020, and it is expected to be implemented in the following period.
Instead of pity, talk and understanding
Ivana Janković faces architectural and social barriers and needs support to overcome them.
"My disability implies difficult movement and motor retardation. The personal assistance support service enables me to fully satisfy my personal and social needs, as well as to fulfill my obligations in a timely and adequate manner," she says.
Her assistant is Jovan Kaluđerović, professor of Serbian language and literature. When he talks about the challenges he faces in providing this service, he says that the greatest success is that the time he spends with the user is nice and useful for the user. He adds that while doing that job, I realized that there are still those who do not understand the problems of PWDs.
"They have pity, but not the will to really listen and understand them," says Kaluđerović.
For Vuk Vujić, who has a physical disability, the assistant is support in movement. "In order to acquire a social-social life".
Thanks to that, as he said, he met people similar to him, made acquaintances, and for the service he says "it teaches us how to go through life more easily.
His assistant, Jelena Pejović, graduated from high school for food processing, and she applied for that job by chance when she moved to Podgorica. She has been an assistant for two years and says she would do the same job in the future.
"Through them, I learned how to fight through life," she says.
Bonus video:
