Household conditions and their adaptation to the needs of people with special needs
Employment and occupational therapy
How to change the situation in psycho-neurological institutions for the better
In Ukraine, there are 151 psycho-neurological institutions (PNI)) (according to 2013 data) for people with severe mental disorders and development features. Most of the psycho-neurological institutions are located in remote villages and are designed to accommodate from 120 to 700 inhabitants in one institution.
In 2013, volunteers of the Project "Helpus" visited 7 psycho-neurological institutions for children and adults in the Zaporizhzhia region. In this article, we would like to summarize our observations of the problems of these psycho-neurological institutions and describe possible ways to solve them.
We hope that some of the people who read this article will not remain indifferent to the problems of residents of psycho-neurological institutions and the situation will begin to change for the better. Please write any wishes and suggestions to our address.
Management of psycho-neurological institutions often lacks modern management skills. Many directors previously worked as heads of collective farms or chief agronomists. They did not take special courses on managing psycho-neurological institutions for people with special needs. Some, having worked as directors for many years, still do not know the specifics of diseases of inhabitants. They do not have a clear understanding of the goals of the psycho-neurological institution, the features of rehabilitation. There are no development plans for the year and several years ahead. There is only one task - to feed, maintain and dress inhabitants.
Many directors do not have modern technologies, do not know how to use a computer and the Internet. Professional development of directors and employees is a rare event.
A characteristic feature of the management of psycho-neurological institutions is the concealment of real problems from the management of the region. At the same time, they are not afraid to turn to foundations and potential donors to solve these problems.
The reason for this behavior is often the fear of being removed from one's position. Also, many directors live in constant fear of inspections by the prosecutor's office and other authorities. At the same time, in order to survive, they often have to break the law.
Relations in the collective of psycho-neurological institutions leave much to be desired. There is no feeling of a unified team, there are constant intrigues and hidden dissatisfaction with each other.
The PNI system is experiencing major problems with providing qualified doctors. This is explained by several reasons:
- low salary;
- high burden on the doctor;
- remoteness of most psycho-neurological institution from big cities;
- lack of normal living conditions for doctors in many psycho-neurological institutions;
- difficult working conditions;
- a complex contingent of wards.
In some psycho-neurological institutions, the positions of therapists, psychiatrists, and neurologists remain vacant for years.
There are cases when, due to the lack of funds for treatment, the oncology dispensary refused to treat cancer patients.
Dental care and dentures are practically not provided, despite the fact that many psycho-neurological institutions are equipped with new dental equipment.
The provision of medicines is weak.
There are many elderly and seriously ill wards in psycho-neurological institutions who need pain relief and palliative care. Unfortunately, we had to hear from doctors about problems with the license to use narcotic painkillers.
It is often heard that prescribed medicines are not reviewed for years and the maximum period of use of the drug is exceeded.
Household conditions and their adaptation to the needs of people with special needs
In most psycho-neurological institutions, inhabitants live in 1-2 storey buildings, in separate rooms with 2-5 people per room. The condition of the buildings in the psycho-neurological institutions we saw is normal, the windows have been replaced with plastic ones almost everywhere, the premises have been repaired.
The main problem is the crowding in many rooms and the lack of personal space. In some psycho-neurological institutions, there is no common room in the building for bedridden inhabitants where the inhabitants could be gathered for a concert or other event. Some buildings are just a long corridor with rooms like hospital wards. "Recumbent" wards in such places may not be in the fresh air for months or even years.
In some psycho-neurological institutions, we saw two toilets standing side by side in the toilet, without a partition between them. It turns out that people who fulfill a need should sit next to each other, communicating with each other. Even in kindergarten, this is not normal, let alone adults.
Common "living rooms" usually have a TV set and sofas with chairs. Here, inhabitants gather together, chat and watch TV.
Sometimes such rooms are too cramped and dark, with an old TV and a bad picture on it. In other psycho-neurological institutions, they are bright with a large new plasma TV set installed.
In some psycho-neurological institutions there is a good assembly hall, in others a dining room is used instead of a hall, or the assembly hall can accommodate only a part of the inhabitants.
In some psycho-neurological institutions, the territory and premises are not designed for the movement of people in wheelchairs. For example, high thresholds in doors, narrow doors, broken asphalt and high curbs.
Financial problems
Disability pensions:
25% of the disability pension received by inhabitants is accumulated in the inhabitants' personal accounts. It is possible to credit these pensions to a deposit account, while interest on the deposit will also accumulate in this account. This will increase the income of inhabitants by several thousand hryvnias per year.
Unfortunately, directors of psycho-neurological institutions do not have clear instructions on this issue. Many directors are afraid to carry out manipulations with the personal accounts of inhabitants, fearing inspections by various authorities. Only a small part of the directors risked acting in favor of the inhabitants and transferred the funds to a deposit account.
Another component of this problem is that the accumulated funds are not always used. According to the idea, these funds should be used for the benefit of the wards - the purchase of personal belongings, household and electronic appliances, etc. The decision on the use of these funds is made by the board of trustees, which meets at the psycho-neurological institution. But it was not possible to get exact instructions on this matter. It is not clear how often the board of trustees must meet, what expenses are permissible and what are not.
And, finally, the third component – in the event of the inhabitants's death, the funds collected on his account are kept in a bank account for 6 months, and then they go to the state budget.
Thus, experiencing a chronic lack of funds for medicines, food, and health care, many residents of psycho-neurological institutions cannot actually use the means they have by law.
Delays in payments by the Treasury
Many directors of psycho-neurological institution complain that, despite the availability of funds in psycho-neurological institution accounts, the treasury does not make or delays many payments. Thus, even the money credited to the charitable account of the psycho-neurological institutions cannot always be used for its intended purpose.
In such a situation, directors cannot plan their activities and decent companies from which the psycho-neurological institution orders goods and services stop working with the psycho-neurological institution. There remain those companies that work on debt, but at inflated prices.
Opacity of procurement
The procedure of purchases in psycho-neurological institutions, construction works and repairs is not transparent. Journalists and public organizations often discover the facts of the purchase of products or things by psycho-neurological institutions at significantly inflated prices. Often, directors of psycho-neurological institutions are simply "lower" by the companies from which they have to make purchases. Therefore, 20% or more of the funds allocated for the purchase may go to refunds or overpayments for goods.
Despite the fact that an individual rehabilitation program (IRP) must be completed for each inhabitants, the quality of the development of this program is very low and the same program is usually not implemented. This happens for the following reasons:
- psycho-neurological institutions often lack a rehabilitator, or their professional level is very low
- the existing staffing schedule of psycho-neurological institutions does not allow to carry out the activities described in the IRP (lack of staff)
- most often the staff themselves do not believe in the feasibility of rehabilitation, and believe that the foster children only need food, clothing and housing.
Leisure in PNI is very poorly developed, although some psycho-neurological institutions stand out for the better in this direction. Most often, inhabitants spend time in front of the TV. The social worker of the psycho-neurological institution is engaged in making crafts and other recreational activities with only a small part of the inhabitants. And even for them, the psycho-neurological institutions do not have enough materials for crafts - beads, fabric, wire, rope, etc.
Some inhabitants take part in sports and even in inter-boarding competitions. But, in general, for the majority of inhabitants, physical education and physical therapy classes are held extremely rarely. There is often a shortage of balls, tennis rackets and balls, and sports uniforms. Not everywhere has normal sports grounds - bars, gates, basketball backboards. The room where the simulators are installed in some psycho-neurological institutions is opened only during the arrival of the commissions. The holding of competitions is held back by a lack of funds for fuel for the transportation of inhabitants.
Volunteer groups do not visit psycho-neurological institutions often. Concerts are rarely held and not all inhabitants attend them. Bedridden inhabitants have the worst leisure time.
Trips outside the psycho-neurological institution are limited due to lack of buses, lack of fuel and lack of travel budget. Usually, the psycho-neurological institution has only a cargo-passenger gazelle, an ambulance (UAZ) and 2-3 passenger cars. As a result, many inhabitants do not leave the psycho-neurological institution for years, and a transporter must be hired to organize outings.
Rest and sanatorium treatment
Despite the fact that according to the individual rehabilitation program, many inhabitants have the right to sanatorium-resort treatment, in practice vouchers are issued extremely rarely. Many people need an escort, but the ticket does not provide for an escort. Or there is a voucher, but there are no funds for travel to the sanatorium.
Sometimes inhabitants are sent to a summer camp or sanatorium, having paid for the ticket at the expense of 25% of pension funds from the inhabitantss personal account. At the same time, the choice of a place to rest takes place according to a non-transparent procedure, most often inhabitants rest in those places where normal people will never go (and the cost of the ticket may be overestimated). Most often, inhabitants are sent on vacation lasting 21 days, although, in our opinion, it is better to shorten the period to 10 days, but to give more people the opportunity to rest.
At the same time, there are psycho-neurological institutions located in resort areas, but they are not developed as places for inhabitants of PNI to rest. The use of one's own recreation facilities would make it possible to significantly reduce the cost of recreation for inhabitants and thereby improve the health of more people.
Employment and occupational therapy
Many inhabitants suffer from boredom and from the awareness that they do not bring any benefit to society. They would like to be able to work and earn additional funds that can be used at their own discretion.
Most psycho-neurological institutions have auxiliary farms, but only a small part of the inhabitants are employed by them. Some women in PNI can make crafts, sew, weave and do other simple work. But, unfortunately, such work is not paid, because the products do not find sales. Charity fairs are occasionally held, but systematic work is not conducted.
Many psycho-neurological institutions have an occupational therapy specialist, but most often the occupational therapy is limited to daily sweeping of the area, nothing more.
How to change the situation in psycho-neurological institutions for the better
1. Caring people should appear who will feel the problem with all their heart and want to solve it. Then these volunteers and fund employees must implement the first pilot projects, which will then be implemented by the state.
2. The state must develop a program to reform the PNI system and create group homes.
Improvement of management:
1. Open competitive selection of candidates for the position of director and his deputy.
2. Constant evaluation of the quality of the work of the director and his deputy by the public board of the psycho-neurological institution and its employees, in case of unsatisfactory work - selection of a new candidate.
3. Increase in the salary of the director and his deputy.
4. Continuous professional development of psycho-neurological institution management - courses in management, fundraising, time management, computer technologies.
5. Directors must necessarily master a computer and the Internet.
6. Each psycho-neurological institution must have its own page on the Internet.
7. Planning of psycho-neurological institution activities for the year and for the coming years.
8. Annual independent audit of the work of the psycho-neurological institution.
Solving medical problems:
1. To significantly increase the salary of doctors in psycho-neurological institutions, as well as provide travel compensation for visiting doctors. This will not significantly increase the total budget of the psycho-neurological institution, but it will increase the quality and life expectancy of the inhabitants.
2. To create normal living conditions for doctors and their families in each psycho-neurological institution, or in case of a doctor's unwillingness to live in a psycho-neurological institution, to compensate for his travel from the city.
3. Create an independent medical commission with the participation of representatives of public organizations, which will have access to medical cards of wards and the right to visit and inspect psycho-neurological institutions.
4. Openly investigate every death in the psycho-neurological institution, especially among people of working age.
5. Resolve the issue of uninterrupted supply of narcotic painkillers to nursing homes and train palliative care staff.
6. To ensure the stay of patients in different rooms depending on the type and severity of the disease.
Solving household problems:
- create small "group houses" or apartment blocks for 7-10 inhabitants, among those who can live with minimal external support (example - "Happy house" in Kalinivka);
- to review the placement of inhabitants in boarding buildings and the placement of administrative premises. Sometimes it makes sense to move the office from a separate building to the first floor of the two-story main building, and make a cozy house of social adaptation for 7-10 inhabitants in the house;
- make toilets and showers adapted for the disabled, prevent the placement of toilets without partitions between them;
- provide places for concerts and entertainment events;
- to adapt the territory and premises for movement in wheelchairs.
Solving financial problems:
• Transparency in psycho-neurological institution finances is needed to reduce corruption and kickbacks. For this, it is necessary to oblige psycho-neurological institutions to publish reports in the given format (quantity and exact name of products, brand of products, etc.) on the official website of the Department of Social Protection.
• To develop clear instructions for directors of psycho-neurological institutions, in which they are obliged to accumulate pension funds in a deposit account and to add interest to the same account of the ward.
• List the areas in which pension funds can be spent. We offer to include in this list - beds, furniture, orthopedic mattresses, televisions and set-top boxes, computers, tickets to the sanatorium, toys, stationery, mobile phones and account top-up, repair and reconstruction of the premises in which the inhabitants lives or will live.
• We suggest that representatives of public, volunteer organizations and charitable foundations be included in the boards of trustees.
• Prescribe the minimum frequency of guardian council meetings - 1 time per quarter.
• Regional departments of labor and social protection should check the balance of funds in pension accounts twice a year and prevent the funds from being unused for a long time.
Solving rehabilitation problems:
• Increase the salary of rehabilitators and increase the staff of rehabilitators.
• Create living conditions for rehabilitators.
• Conduct training courses for rehabilitators.
Improvement of inhabitants' leisure and recreation:
• Gradually purchase economical transport (buses, minibuses) for psycho-neurological institutions (second-hand is possible).
• Increase funding for cultural events and excursions.
• Use pension funds from personal accounts to pay for trips, excursions and leisure time.
• Increase expenses for the purchase of sports equipment and the construction of sports grounds.
• Ensure constant availability of sports and game rooms for inhabitants.
• Rehabilitate wards for 7-10 days instead of 21 days, which will allow twice as many wards to heal.
• To develop conditions for rest in those psycho-neurological institutions located in the Resort Zone.
• Cheap tent camps and tourist trips can be organized for some inhabitants.
• Implement a transparent mechanism for purchasing vouchers and choosing the best health resorts in terms of price-quality.
Development of employment and occupational therapy:
• to work out options for the employment of inhabitants that could bring real income (gardening, greenhouses, viticulture, harvesting by hand, making products, collecting simple products, knitting, sewing, weaving, souvenirs, beadwork and other crafts, work on the Internet, service cafe)
• create a psycho-neurological institution sales service and an online store for the sale of products
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