Caritas Albania
The Social Care for people with mental disabilities
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The Social Care for people with mental disabilities
Study Report
Tirane, June 2011
“This publication has been made possible with the financial support of Agency for the Civil Society Support. Its content is responsibility of the author. The opinion expressed in it is not necessary an opinion of Agency for the Civil Society Support”.
Study Team: Blerta DRENOFÇI Elona MEMETAJ Translated by: Ledia NDOCI Design and layout: Sonila KRASHI
Tirana, June 2011
© Copyright Caritas Albania
The copies of this report are without payment, Caritas Albania has the right of publishment. In every case it should be mentioned the resource of information.
For more information contacts: Rr. Don Bosco, Nr. 4 , Tirane, Albania Tel. + + 355 4 2 30088/47 Fax:+ + 355 4 2 34327 E-mail: caritasalbania@caritas.icc-al.org
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Table of content INTRODUCTION . ..................................................................................................... 7 I.1. History of social care system for people........................................................ 8 with disabilities in Albania................................................................................... 8 I.2. Disability allowances system........................................................................ 10 I.3. Service system for people with disabilities.................................................. 12 I.4. Disability assessment system...................................................................... 14 I.5. Employment services for people with disabilities........................................ 15 II. METHODOLGY.................................................................................................... 17 II.1. Participants................................................................................................. 17 ll.2. Instruments & Materials............................................................................... 18 II.3. Procedures.................................................................................................. 19 II.4. Statistic analyses......................................................................................... 19 II.5. Ethics in conducting the study.................................................................... 19 III. RESULTS............................................................................................................ 20 llI.1. Results of the interviews with individuals with disabilities ....................... 20 III.2. Parents and relatives of individuals with disabilities.................................. 28 IV. CONCLUSION.................................................................................................... 35 V. REKOMANDIME.................................................................................................. 38 REFERENCES......................................................................................................... 39 List of Pictures Picture 1. Participants’ gender........................................................................... 17 Picture 2. Represented categories of people with disabilities ......................... 18 Picture 3. Co-living of people with disabilities................................................... 20 Picture 4. Acceptance of the amount of the payment....................................... 21 Picture 5. The desired amount of payment........................................................ 21 Picture 6. Plans for the future............................................................................. 22 Picture 7. Meeting with friends........................................................................... 22 5
The Social Care for People with Mental Disabilities
Picture 8. Possibility to meet with friends.......................................................... 23 Picture 9. Obstacles to organize meeting with friends....................................... 23 Picture 10. Attitudes . ........................................................................................ 24 Picture 11. Health condition............................................................................... 24 Picture 12. Health institutions that have provided their assistance................... 25 Picture 13. Frequency of medical visits............................................................. 25 Picture 14. Reasons of not working................................................................... 26 Picture 15. Spare time........................................................................................ 27 Picture 16. Desires............................................................................................. 27 Picture 17. Reasons of not having genetic analyses........................................ 29 Picture 18. Number of doctors contacted for the diagnosing............................ 29 Picture 19. The desired amount of the disability allowance............................... 31 Picture 20. Education places............................................................................. 32 Picture 21. Needs............................................................................................... 34 List of Charts Chart 1. Institution where the child was diagnosed........................................... 28 Chart 2. Contacts with the health institutions.................................................... 30 Chart 3. Equal treatment in the health institutions............................................. 30 Chart 4. Reasons of not receiving the service in the health institutions............ 30 Chart 5. Benefit from KMCAP............................................................................ 31 Chart 6. Orientation by KMCAP......................................................................... 31 Chart 7. Reasons for lacking of education......................................................... 32 Chart 8. Reasons of not spending free time with peers . .................................. 33 Chart 9. Reasons for unemployment................................................................. 33 Chart 10. Care during daytime........................................................................... 33 Chart 11. Need for supportive services/ emotional state................................... 34
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INTRODUCTION Around 15% of world population have some form of disability, from whom 2-4% experience significant difficulties in functioning. Global prevalence of disabilities is higher than the previous assessments of WHO that dates back to 1970 and suggest a figure of around 10%1. The studies show that in developed societies, provision of social care is considered as an important aspect of the role of state and the benefits from the care are part of the individuals rights (Good, 2003). According to Marin (2003), success or failure of care in the area of disability is decisive in many ways for the future of the states or associations of social wellbeing. Drake (1999) defined a theoretical frame for social care system for people with disabilities. According to him the model concerning social care varied from the model of negative politics where were denied the rights, in other more advanced models such as the Slow Model, Fragmentised model, Maximal Politics Model, Social Model and lately the Hybrid Model, where the state promotes the provision of services and a legal framework according to a comprehensive approach. Currently in Albania, people with disabilities constitute the major group of individuals in need covered by the system of social protection. Though the great results achieved, the system of social care has not managed to be comprehensive for the people with disabilities, who, in Albania, continue living in conditions of extreme poverty without meeting the basic needs and without receiving even the elementary services (Caritas 2009). According to Drake scale, the care system in Albania can be considered as a Fragmentised System where the state takes some positive steps forced more by the pressure exercised or by the circumstances. The few positive steps are not a result of the will to draft coherent long-term and applicable strategies. Aim of this study is not only to reflect the conditions of people with disabilities and of their families in certain regions of the country but to explore the problems so that the outcomes can serve to improve for a greater involvement and in a more integrated way of people with disabilities as beneficiaries of the social assistance schemes through the improvement of legal framework and legislation implementation; improvement of assessment methods of people with disabilities 1. WHO, 2011, World Report on Disability
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The Social Care for People with Mental Disabilities
through a multidisciplinary assessment structure; expanding and improving the range of community services in meeting the basic daily requests and needs of people with disabilities.
I.1. History of social care system for people with disabilities in Albania During the communist years, disability in Albania was considered as a health problem. During that period there were made no efforts to enable the people with disabilities to play their role in the society. The assistance system of that time was enough to cover their basic needs (Olsen 2000). A study of Handicap international (2004) showed that even in the South-eastern Europe the systems of social care were part of the social program on universal well being, that offered work and pensions, residential institutions for the seriously sick. The traditional opinion for the disabled was that of pity, shame and as a consequence many families hided and isolated the disabled members of their family (ADRF, 1999). According to Olsen (2000), when possible the people with serious disabilities were sent to residential institutions, the view of which when broadcasted by the international media shocked the whole opinion at the beginning of 90’. Around 200 people with serious mental disabilities were isolated in 6 residential institutions. The small number of people with disabilities in institutions was related to the lack of financial income to afford big institutions but is also related to the tradition of Albanian family to take care and “protect” disabled people (Flager, 2009). Another category treated by the legislation of that time in Albanian through payments in cash were also all the people turned into invalids due to disabilities caused at the place of work, who gained a full or partial pension according to the grade of disability. This grouping has been and even today is defined with the term “work invalids” who are further categorised as complete invalids or partial invalids2. The number of beneficiaries from this grouping was limited, around 1700 people3. In the 90’ we were confronted with a double transition: first of all with the medical paradigm of treating disabilities changed toward the comprehensive one based on the human rights; secondly it was the shifting from a centralised economy and thought to a market economy. According to the disabled people the 2.Pension system is regulated by law no .4171 date 13/04/1966 on “State Social Insurance in Per Sigurimet Shoqërore Shtetërore në SPRA” that drafted the criteria of defining invalidity. This law was in power until May 1993with the approvl of the new law in the areaof social insurance amended in 1993 in specific provisions including the ones on invalidity. 3. SHSSH (State Social Service), 2009. Manual of Social Care Service Standards for People with Disabilities.
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care system offered less protection than before. The financial restrictions of the 90’ made the public funds to diminish and not have enough to cover the needs of disabled people who were the most affected category in offering the services of social care. According to Handicap International (2006), access at social services in the countries of South-eastern Europe is still limited as a consequence of the negative attitudes of public opinion; lack of decentralization of local services; lack of professionalism in treating medically the cases. After the 90’ there emerged opportunities of assessing and involving the disabled in a new system of social assistance based on specific policies and programs in identifying, assessing, involving and their integration in the social life4. Law no 7710, date 18/05/1993 “On social help and care”, through the support in cash, it was the first support of post-communist period for disabled people. The legal framework in the area of disability was further improved by approving the legal statutes for special groups of disabled people5. These statutes apart from payments in cash, guaranteed rights and legal protection for services, employment, facilities in energy and transport, accommodation, exclusion from certain taxes etc. Amending of law on “Help and social care”, law dating 10/03/2005 on “Help and social care“ assured the payments in cash with preventing, rehabilitating and integrating services for this category. The issue of necessity of fulfilling and improving social programs and schemes promoted the drafting of new strategies and legal improvements in the field of social services by drafting a framework of policies and laws as contemporary as possible6. Reform being undertaken currently in the field of social services, initiated with the politic document of the Strategy of Social Services (2005-2010), in the core of its philosophy lays decentralisation and deinstitutionalisation of social services, based on the establishment of services at the community level there, nearby the beneficiaries and disabled people and emerged their needs to act like independent human being and integrate equally with the other members of the society. Reform in the field of social care develops simultaneously with the process of competences decentralization and transferring of responsibilities to the central government. This process aims the establishment of a service system where the individual is helped and supported in the environment he lives by respecting his personality, values, particularities, preferences and resources (GTZ, 2008). National Strategy on Disabled People (NSDP), with its action plan, aim perfection and its implementation even by the civil society has turned into an orienting guide in planning and implementing the rights of disabled people 4. SHSSH, 2009. Manual of Social Care Service Standards for People with Disabilities. 5. Law on “Status of Work Invalids” (1994), Law on Blind People Status (1996) and Law on paraplegic and tetraplegic invalids status (2000)
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The Social Care for People with Mental Disabilities
in different areas. Those of services, education, employment, adaptability, legal framework and capacity strengthening. In the process of welfare social system, the role of disabled people has been decisive in every intervention or improvement of legal framework in Albania (personal experience).
I.2. Disability allowances system The schemes of benefits in cash for disabled people in Albania have been considered as one of the main directions of different strategies of Albanian state. Albanian law recognises two main schemes of assistance in cases of disability. The first scheme is the traditional one of benefiting from the social insurances, this one was inherited by the communist regime. From this scheme profit people turned into disabled at work and the beneficiaries of this scheme are known as “work invalids�. The total number of beneficiaries from this scheme is 53.965 persons, 1500 of whom benefit the custody payment. The second scheme is related to the disability allowances to people who were born or are have become disabled before getting employed. The number of beneficiaries for this scheme is 76.975 of whom 15 098 are caregivers of the disabled people6. Disability allowances were first applied in 1993, pursuant to the first Albanian law for social protection (law 7710; 1993). According to it people with disabilities were provided only a special help in cash according to the amount of the economic aid the head of family received (around 22$ per month). Later people with disabilities started being treated with an individual payment per person according to the medical assessment. The legal framework of 1993 had huge gaps regarding the categorization of disability and also of the agegroups that will receive the benefits, because a significant number of disabled people were excluded to the benefits. These weaknesses were reflected in the new law on social care of 2005. Here were defined the beneficiaries of disabilities allowances and it was introduced the concept of the caregiver according to the assessment of medical assessment commissions and it was stated clearly the concept of social services, that should be provided by the state to the individual or groups in need including the people with disabilities. Actually persons with mental disability benefit 90 $ per month and in the same level benefit their care givers. Blind people benefit per month 120$ and so do their care givers. Paraplegic benefit 250$ per month and their care givers 95$ per month and the state cover them the social and health insurances and also 6. MoLSAEO 2008
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Caritas Albania
their seniority for pension effect. Apart from the base salary for disabled people, the groups with special legal status benefit even other payments in cash or other type of services. Special legal status for different categories of disabled people include the law on work invalids status(1994); Law on blind people status (1996); law on para-and tetraplegic invalid status. They further define other payments for different levels of education, facilities in public transport, social accommodation, reimbursement of medicines, compensation on electric power and telecommunication, expulsion from certain taxes etc. Law no 7703, date 11/05/1993 on “Social insurance in the Republic of Albania” (amended) initially covered with income only people who for different reasons turned into disabled ones during employment period and of the main condition of being a contributor in this scheme at the moment when occurred the case of disability. Upon the amendments of law no 9377, date 21/04/2005 we should highlight among others things that it brought an enlargement of the beneficiaries circle, changes that help mainly the first category of disabled and the other categories are left uncovered despite of the contributions to the social insurances scheme. Cabiri & Xhillari (2005), highlighted that only the direct cost of disability was reimbursed by the Albanian state. “Invisible” costs of reimbursing of different supportive, social, rehabilitating, medical services were not an object of profit. Social care scheme toward disabled people in Albania has been oriented toward payments in cash. This is related to the fact that people with disabilities and their families come from poor categories of the society. Though the major number of beneficiaries of schemes (~ 45.000 people with disabilities) benefit only 90$ in a month7, less than half of the minimal official salary8, income from the disability allowances are income that help a lot of Albanian families cover the basic needs. Though the scheme of payments in cash has improved year after year, this thanks to the impact of actions of disabled people, it still remains problematic. This scheme encourages special categories of disabled people to parasitize, it obstacles the orientation toward employment, limits and disorients the request for service of people in need, caregivers can be only the family members and this limits the choices by considering only the family members, a fact that brings a negation of the service offered by the personal assistant. On the other hand this solution affects women keeping them unemployed and retired within the family who in 90% of the cases plays the role of the caregiver. This scheme does not bring a possible choice of the caregiver of an external employee because the disability allowances 7. MoLSAEO,2009, unpublished report 8. DCM no 522, date, 15/ 03/2009, minimal salary is 18000 Albanian lek per month
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The Social Care for People with Mental Disabilities
account to half of the minimal salary. This scheme also affects negatively the mismanagement of the budget in educating people with disabilities, by increasing in a fictive way the number of those who attend secondary or tertiary education. Another problem deriving from the scheme is also the discrimination within different groupings of disabled people. The major grouping is the one of mentally disabled who does not receive specific benefits and does not have a special status. There are also differences in benefits within the groups, due to level of pressure exercised and not according to the specific needs of the individuals that should be in reality the object of assessment by the respective structures (ex. blind people are the category receiving the major benefits and it is the only category who have been encouraged to work, while the other categories lost some of their profits if they get employed; only blind people, as beneficiaries of disability allowances are treated as such even upon retirement; or only for the paraplegic are paid the caregiver insurance). Legal discrimination is obvious even toward people with limited abilities in hearing, who benefit payments due to limited disability only in hearing who benefit a disability payment pursuant to law on “Help and social services� until they are seven- years old according to the directive issued by the Ministry of Labour, Social Affairs and Equal Opportunities. The weaknesses of the scheme are related closely to the system of disability assessment.
I.3. Service system for people with disabilities Currently in Albania there are 11 public centres for the people with disabilities that function in eight of the biggest regions of the country. They are frequented by 381 people that constitute 0.3% of the general number of people with disabilities registered. There are also 14 public centres in the same cities where national centres of development function. The number of beneficiaries is 1210 people with disabilities or 1% of the general number of people with disabilities registered in the disabilities allowances scheme (ADRF 2009). All the service centres are placed in the urban area leaving uncovered 95% of the administrative units in the country and all the rural areas. Only 1,3% (no=1591) of the people with disabilities registered are being reported to receive social services, in a form of residential services, home, family and daily centres. Cabiri&Xhillari (2005), show that Albanian families with members with disabilities are constantly searching services and they imply only the daily and residential services. Many families have emigrated from the remote regions where there are no services toward cities with existing services. The studies in 12
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the country present as a necessity the implementation of standards in offering services at the daily and non-daily centres for the people with disabilities, with aim of improving the service quality and their approximation with the paradigm of an independent life, involvement and self-decision (Flagler, 2008). Lack of training for people with serious disabilities is considered as one of the main points lacking in the range of services for the people with disabilities (ADRF, 2010a). In all the four reports of monitoring the implementation of National Strategy on people with Disabilities developed by ADRF for the period 2006-2010, the results show very little achievements in the field of social services and benefits. These findings have been taken from the observations in the responsible institutions but can also come directly from people with disabilities and their relatives. “the services offered for sure do not cover all the geographical areas of the country, they are concentrated only in the main cities and also do not cover all the categories of disabled people in accordance to the age-groups and type o disability. It is important to highlight that the new models have not been estimated regarding their efficiency�.
Though there is an increase of the attention, the services for people with disabilities are still not enough to meet the needs and respect fully human rights (ADRF 2007, 2008b, 2010a). Other studies in the country show that there are obvious improvements in the infrastructure and programs of trainings for people with disabilities in the existing residential and daily services (Flagler 2008a; 2010a). According to Flager (2009) these changes are related firstly with changing of government attitudes as a result of national obligations; powerful advocating role of grassroots organization at the central and community level; assistance in empowering capacities of international organizations. Considering the aforementioned there are being made efforts to empower and affect the creation of a comprehensive service system for the disabled people. Deinstitutionalization and decentralisation of services are the two main philosophies of the country strategies concerning services. While for the first the studies show that there is an increase, the process of decentralization is progressing slowly. The assessments conducted lately show that the central government have only the assets and not the budgets for the service mentioned. This process is related even to the absent capacities at the local level related to disability; lack of a clear vision for the services for disabled people; lack of knowledge in planning and defining local budgets to offer new services for the disabled people (GTZ, 2008; 13
The Social Care for People with Mental Disabilities
GTZ, 2009). The system of funding social services for disabled people and other groups supported law 9355 with the law on “Budget” and in the directives issued by the Minister of Finance pursuant to the law on “budget”.
I.4. Disability assessment system Training of people with disabilities constitutes one of the main programs of the State Social Service in Albania. The Program of People with Disabilities is based on the assessment of limited abilities as a result of physical, mental, senses damages borne with or gained during life. Assessment of disability is based on the regulation and list of illnesses and condition of individuals with disabilities. The assessment is conducted by the Medical Commission on Defining Working Ability (KMCAP), that depends from the Institution of Social Insurance that functions in 26 districts of the country, and the Medical Commission on Blindness Assessment (KMVP), that depends on the State Social Service and it is only in Tirana for all the blind people. The commissions conduct the physical examination of the people and deal with the epicrises, issued by specialised medical clinic of regional hospitals and other documents that prove the accident occurred at work or condition of disability. Based on this, the commissions take their decisions where they define the reasons and the group of disability; the level of working capacity and need for a caregiver. People with disabilities should present themselves to the central units according to the decision of Medical Commission on Defining Working Ability to draw their allowances and receive their services (SHSSH, 2010). This way of assessment has functioned for years and it has highlighted a lot of other problems displayed during its implementation. The problems start from the legal frame related to his assessment. The law recognises the right of assessment by Medical Commission on Defining Working Ability and Medical Commission on Blindness Assessment that are composed only of medical staff and the assessment is based on the medical model and on the damage of the person without taking into consideration his/her living conditions and the need for integrating social services; legislation, though its improving is still obligatory to present annually and have unnecessary diagnoses; weakness in legislation exclude also the elderly from the assessment (benefit) related to disability when they fall into this category when they retire (ADRF, 2007). According to a study of ADRF (2008c), the legal framework presents weaknesses even regarding the procedures and the necessary documentation for assessment by making the people with disabilities waste a lot of time through filling the documentation for Medical Commission on Defining Working Ability and this also leads in delay of the allowance payment for a period 14
Caritas Albania
of time. While in the assessment criteria are left unsanctioned legally and in a clear way the groups of invalids and their categorisation according to the diagnoses; it is applied the same procedure of assessment for the minor categories and the adult one; it does not provide and address the needs of people with disabilities for different therapies, transport and supportive means, for rehabilitating and supportive services especially for people mentally disabled. There are lacks in the legislation in defining, during the assessment, of the institution of the caregiver that in reality leave space for uncertainty of the role and competences of the caregiver appointed by the institution and the level of legal representation this custody will extend. Even the system of contesting the decisions of Medical Commission on Defining Working Ability represents a series of weaknesses, a fact noticed by the legal provisions in power and also by the practice related to the exercise of this right on behalf of the people with disabilities.
I.5. Employment services for people with disabilities According to official statics, 60% (no =57317) of women and men with disabilities are reported to be in the working-age9. According to the National Service of Employment in 2008 were registered at the employment offices 2288 people with disabilities as unemployed and seeking for a job. Only 0.3% of them were offered a job and 1.6% was offered possibility of training in the centres of professional training. Law on employment and professional training seen in its appearance encourages employment but it is completely inapplicable and does not comply with the international standards (ADRF, 2006a). According to a study ADRF/ALBVET (2010b), the major problems that obstacle the implementation of the right for employment of people with disabilities are related with the weakness of local assessment of the individuals needs; lack of encouraging policies of employment and of professional formation; lack of infrastructure and supportive services; lack of information and low self-esteem of people with disabilities, lack of a movement to ask for the rights for employment, because the emphasis has always rested on the requests for the increase of payments in cash. The results of the monitoring of the Strategy on People with Disabilities for 2010, show that employment and professional formation of people with disabilities 9. Provided by the Ministry of Labor, Social Affairs and Equal opportunities.
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remains a serious problematic and the pace of realizing national engagements and international documents has not started their implementation yet. People with disabilities in Albania are not part of the aid schemes for encouraging employment and are considered as passive members of the society and not active contributors. In order to change the concept of this paradigm are required concrete actions regarding the improvement of the legal framework related to the process of need assessment; encouragement of monitoring and of employment and professional formation; strengthening of the movement of the disabled people and its orientation toward rights for employment; awareness raising of the public opinion in general.
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II. METHODOLGY II.1. Participants Participants in this study were people with disabilities (no =252) and also their relatives (no=362). All the 614 participants gave their opinions through two questionnaires, that were managed by Caritas Albania staff. It was paid attention so that both the genders were represented in the study. Figure 1 tells on the gender of the individuals and of their relatives, participants in the study. Around two thirds of the relatives that took part in the study were women (66.2%, no=229). Among the disabled people prevailed males (61.1%, no=154). Geographical distribution of the questionnaires corresponds with the regions where Caritas develops its activities respectively in: Tirana, DurrÍs, Laç, ShkodÍr, Elbasan, FushÍ KrujÍ. Average age of the interviewed parents was 45 years old and the one of individuals with disabilities was 23 years old.
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Picture 1. Participants’ gender
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The Social Care for People with Mental Disabilities
Categories of people with disabilities represented in the study are shown in figure no 2. Though we focused more in mentally disabled there were people with multi disabilities.
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Picture 2. Represented categories of people with disabilities
The participants were selected by coincidence with the collaboration of Caritas local staff, service community centres in the respective regions and also professional schools. The predefined number of participants was 800, and 614 of them managed to provide their opinions through the questionnaires.
II.2. Instruments & Materials In order to provide the information we used two questionnaires. The questionnaire to be filed by the relatives of the individuals with disabilities that contained a large part with demographic data, 30 closed questions where the participants marked the most appropriate answer for their situation. At the end it was written an open question through which the participants gave their opinions where to intervene in order to improve the situation. The questionnaire for the individuals contained a heading with demographic data and also 17 open questions through which people with disabilities gave 18
Caritas Albania
their own assessment for the current situation. The questionnaire was prepared by Caritas Albania staff.
II.3. Procedures The questionnaires of both types were managed by Caritas staff, who having received a preliminary training conducted the interviews in the respective regions. The period of data gathering was from January to March 2011.
II.4. Statistic analyses The data gathered through the quantitative questionnaires were later elaborated in SPSS (10.00 version). Given that the major part of the variables were nominal and ordinal were then analysed the percentages and frequencies. In order to analyse data provided through the open questions were used qualitative methods of analysing.
II.5. Ethics in conducting the study All the subjects of this study decided to get involved by their own decision. They were explained that participation in this study was volunteer. At the beginning of every questionnaire the methodology drafter provided explanations on the aim of this study and how to fill the questionnaire. Through all the phases of this study was respected the principle of anonymity and confidentiality.
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The Social Care for People with Mental Disabilities
III. RESULTS The chapter of results will be presented to the reader divided into two parts. In the first part will be displayed the results achieved by the analyses of the questionnaire with the people with disabilities and in the second chapter will be analysed the answers from the relatives of the people with disabilities.
III.1. Results of the interviews with individuals with disabilities More than half of the people with mental disabilities interviewed lived with their parents (62.2%, no=156). As it is obvious in picture 3, 5.2% of them (no=13) were totally lonely and only one in seven people had a caregiver (14.7% , n=37). Figure 3
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Picture 3. Co-living of people with disabilities
siblings or friends though in a lower degree played their own role in the performance of mentally disabled people already interviewed. Around one fourth of the participants with disabilities in the study did not receive any help or social assistance by the state (23.4%, n=59). Even the participants that 20
Caritas Albania
were treated with disability allowances were not satisfied with the amount because only 15.1% of them (no=38) stated that the amount was unacceptable (look fig. 4). More than one third required to fourfold the amount of this payment so they could afford their basic needs for minimal living conditions (fig.5).
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Picture 4. Acceptance of the amount of the payment
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Picture 5. The desired amount of payment
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The Social Care for People with Mental Disabilities
More than half of the interviewed people (62.7%, n=158) stated that they had plans, dreams, desires they hoped to come true in the future.
65.30%
19.40% 14.70%
Already have plans
No plans
No answer
Picture 6. Plans for the future
Though almost two thirds of the participants stated that they meet their friends tyre (73.1%, n=182), there were even individuals who lived isolated and said that they never met their relatives or friends (12.9%, no=32) (figure 7).
73.1%
14.1%
12.9%
No answer
Never
Yes
Picture 7. Meeting with friends 22
Caritas Albania
As we can see from the figure: 8, 67.8% (no=164) of the participants do meet their friends when they need and want.
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Picture 8. Possibility to meet with friends Picture 9 represents some of the obstacles that make the meetings with friends and relatives become more and more rare. The obstacles are related to the lack of supportive services such as the personal assistant (12.7%, n=32) and of appropriate transport 6%, n=15), and also with the difficult economic and health condition. 2% of the participants marked the box “I am afraid to go out because I submit violence’. Picture 10 shows that only a quarter of the interviewed has not experienced feeling 12.7 %
12 10
9.1 %
8 6%
6
6%
4 2%
2 0
1.2 %
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Picture 9. Obstacles to organize meeting with friends 23
The Social Care for People with Mental Disabilities
of lacking attention (27%, no=67). Two third of the participants in the interview state that some times or many times have been neglected. Only one fifth of the participants said that “normal’ people have behaved in a bad manner toward them during the last year (19.8%, no=50).
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Picture 10. Attitudes
In order to asses the level of access of the participants in the health services they were asked three questions with alternatives, among which they chose the most appropriate alternative for their status. More than half of the participants (67.6%, no=167) results to have had health problems during the last year (look picture 11). One third of the participants had gone to hospitals to receive the specific help for their
.PEFSBUF
Picture 11. Health condition 24
7FSZ HPPE
/PU TP HPPE
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health problems (38.9%, no=98). Picture 12 shows that even polyclinics, personnel in the care centres and also the relatives have provided their help regarding the health concerns of people with disabilities participating in the study.
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Picture 12. Health institutions that have provided their assistance
Study results show that people with disabilities are periodic patients of different dental, oculist services etc. Picture 13 shows the frequency of the visits of participants in the study for specialised medical services.
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Picture 13. Frequency of medical visits 25
The Social Care for People with Mental Disabilities
The participants were asked six questions that aimed the assessment of their employment status and professional formation. Two third of the interviewed were not employed (72.2%, no=182). Among the interviewed who were employed they all liked their job but only 41.3% of them (no=19) said to be paid for their job. Picture 14 shows the marked reasons by the participants to justify their unemployment. The reasons vary from the lack of opportunity to work due to disability (21.8%, no=55) to the fear of losing the disability allowance (0.4%). Apart from the reasons, more than half of the participants stated their desire to be employed (57.2%, no=134). Only 19.8% of the individuals with disabilities said that they have been offered professional formation to adapt to the place of work (no=50) and only 7.5% (no=19) were having a professional training during the time they were interviewed.
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Picture 14. Reasons of not working
Picture 15 show that 29% of the participants spend the major part of their day a school (no=73). Social enters and the entertaining centres were frequented by a small number of participants. The results showed that 40.1% of the participants had never gone on holiday (no=101). The results of picture show that though almost half of the participants with disabilities spend periodically a part of their time in shop and bars (50%, no=126; 41.3%, no=104), 12.3% of them (no=31) never leave home. 26
Caritas Albania
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Picture 15. Spare time
Picture 16. Shows that spare time is important for the participants with disabilities and the majority of them marked this alternative (54%, no=136). Having a personal assistant and providing opportunities to eliminate domestic violence are the desires marked from almost one third of the interviewed (35.8%, n=89; 35.3%, n=89).
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Picture 16. Desires 27
The Social Care for People with Mental Disabilities
III.2. Parents and relatives of individuals with disabilities Parents and relatives of people with disabilities who took part in the study stated that the disability of their children have been diagnosed time after the birth (80.6%, no=286), but there were parents who claimed that the disability was noticed since birth (19.4%, n=69). Chart 1 tells about the institution where the child with disabilities have been diagnosed. Children hospitals and maternity hospitals results to be the institutions that have diagnosed the children with disabilities since birth (20.9%, no=76 children hospitals; 17.4%, n=63 gynaecologic and obstetrics hospitals). Chart no 1 shows also that the institutions where the children have been diagnosed after birth were the regional hospitals and Mother Teresa Hospital (36.4%, no=132; 23.4%, no=85).
Chart 1. Institution where the child was diagnosed Institution
During birth %
After birth %
Gynaecologic and Obstetrics hospital
17.4%
0%
Children hospital
20.9%
0%
District hospital/polyclinic
0%
36.4%
Mother Teresa Hospital
0%
23.4%
Mother and Children counselling centre
4.1%
5.5%
Family physician
8.5%
6.3%
Other doctor
1.9%
8.3%
More than half of the participants (64.5%, no=234) stated that have not been referred to have gynaecological analyses for their child and among those referred only 21.2% (no=77) had managed to have the analyses. Picture 17 is about the reasons that have obstacle the parents to have genetic analyses. More than one third of the participants (38.6%, no=140) stated that the doctor had never recommended them to have such analysis and one fifth of the participants stated that they had no information at all on the necessity of this test (16.8%, n=61). The graphic shows that 5.8% of the parents had never had economic possibilities to have this type of test (no=21). 28
Caritas Albania
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Picture 17. Reasons of not having genetic analyses Picture 18 shows that almost half of the interviewed have underwent to a long process of assessment and final diagnosing by visiting many doctors (21.6%, no=77).
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Picture 18. Number of doctors contacted for the diagnosing More than two third of the participants stated that they have regularly brought their children in the counselling centres and stated also that their treatment was the same like all the other children (79.6%, n=289). Children with disabilities have frequent contacts with the health institutions. This was affirmed by their parents too and they also stated that they had permanent contacts with the health centres (77.4%, n=281), hospitals (48.8%, n=177) and dentist (71.3%, n=259).The results are displayed in chart 2. 29
The Social Care for People with Mental Disabilities
Chart 2. Contacts with the health institutions Contacts with health institutions
%
Polyclinic
77.4%
Hospital
48.8%
Dentist
71.3%
In chart 3 is showed how half of the parents’ participant in the study thought that their children have received the same medical treatment like the other children in the respective health institutions. Chart 3. Equal treatment in the health institutions Equal treatment in the health institutions
%
Polyclinic
65.6%
Hospital
43.5%
Dentis
60.6%
Chart 4 shows the reasons why children with disabilities have not received the same treatment like the other children in the health institutions. As one an notice there is lack of knowledge on behalf of the health staff to communicate with children with disabilities and it is one of the most marked reasons by the parents participants in the study (9.4% polyclinic&hospital; 14.9% dentist). Another reason is related with the negative attitudes of the medical staff (look chart 4). Chart 4. Reasons of not receiving the service in the health institutions Why have she/he received the same treatment in the health institutions
% polyclinic
%
hospital
% dentist
Prejudice/discriminate
8.5%
8%
6.1%
Can not manage to communicate with children
9.4%
9.4%
14.9%
Do not know how to behave with them
3.3%
2.8%
8%
Only 11.6% of the children with disabilities (no=42) had not passed the test of Medical Commission on Defining Working Ability and did not profit any type of help to cover the cost of their disabilities. More than two third of the parents stated that they were given disability allowances for their children (no=302). Only quarter of them stated that they were also given the custody payment (21.5%, no=78) and only 1.7% (no=6) payment for the children education (look chart 5). 30
Caritas Albania
Chart 5. Benefit from Medical Commission on Defining Working Ability Benefit from Medical Commission on Defining Working Ability
%
Disability allowance
83.2%
Caregiver
21.5%
Education
1.7%
86% of the relatives interviewed (no=312) state that the state help was not necessary to cover their basic needs and it is already shown in picture 19, this payment should be have been fur times more for at least half of the interviewed (50.8%, n=160). %PVCMF
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Picture 19. The desired amount of the disability allowance
Chart 6. Orientation by Medical Commission on Defining Working Ability Orientation by Medical Commission on Defining Working Ability
%
Direct communication with the children
69.4%
Rehabilitating services
52.9%
Education
49%
Employment
24%
More than half of the relatives stated that their children had never attended kindergarten or pre-kindergarten institutions (50.1%, no=182) and only 18.2% (no=66) of the parents said that the teachers have worked with individual programs in these pre-primary institutions. A quarter of the interviewed parents said that their children have never attended school (25.3%, no=92). Picture 20 shows that special 31
The Social Care for People with Mental Disabilities
school is mostly seen as an appropriate alternative for the education of children with mental disabilities (40.5%, no=147). 18.2% of the parents said that even when his/ her children used to attend school they have not worked with his/her child through individual plan. The parents who participated in the study lists some of the reasons that have obstacle their children to go to kindergarten or school. Chart 7 shows the obstacles for the education of children with mental disabilities. Obstacles are related to structural barriers including the transport services and that of the personal assistant. A part of the barriers is related to the attitudes because 5.2% (no =19) of the parents said that their children have been offended and discriminated at school and 11.3% (n=41) of them said that the respective authorities have not wanted to register these children at school.
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Chart 7. Reasons for lacking of education Reasons for the lack of education
%
Have not admitted to enrol the children
69.4%
Has started but then has drop out school
52.9%
Has encountered offensive attitudes
49.0%
Lack of transport
24.0%
Lack of personal assistant
10.7%
One second of the parents said that their children could not spend their free time with their peers and friends (41.6%, n=151). As an obstacle for the aforementioned reason they stated the health state and the fear from violence or negative attitudes on behalf of the parents with normal children (look chart 8). 32
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Chart 8. Reasons of not spending free time with peers Reasons f not spending the free time with peers
%
Health condition
24.5%
Being prejudices/maltreated
11.3%
Is afraid
10.5%
The parents of other children do not allow them
4.1%
Two of the questions for the parents were related to the employment of the children with limited disabilities. Almost three fourths of them stated that employment was a taboo and impossible to become true (69.4%, no=252).Almost half of the parents assessed as an obstacle for employment the serous situation due to disability (54.3%, no=197), but also mentioned causes related to negative attitudes of the Employment Offices and of employers (look chart 9). Chart 9. Reasons for unemployment Reasons for unemployment Health condition
% 54.3%
Are not registered at the employment offices
5.0%
Prejudices on behalf of the employers
8.0%
There are no jobs
5.8%
Parents, grandparents, siblings dedicate to the individual with disabilities during the whole day. Meanwhile 14% of the parents (no=51) said that their child spends a part of day at school and 23.7% (no=86) marked the box “goes to the daily centre� (chart 10). Chart 10. Care during daytime Care during the day
%
Mother and father
78.8%
Grandfather/grandmother
15.2%
Brother/sister
11.0%
Goes to kindergarten/school
14.0%
Goes to the daily centre
23.7%
The parents of the children with disabilities considered as very important respite care service (78%, no=283). Chart 11 shows the aggravated situation of the families with children with disabilities. Almost all the interviewed parents stated that it is necessary for them to have counselling service and an ever support of a specialist (90.9%, no=330). In the same way even brothers and sisters should be in contacts with the specialist periodically (75.8%, no=275). 33
The Social Care for People with Mental Disabilities
Chart 11. Need for supportive services/ emotional state % A lot 78.0%
% Somewhat 12.4%
% A little 3.0%
% Not at all 5.8%
Transferring of emotional state to the parent
84.3%
11.6%
2.8%
0.3%
Transferring of emotional state to the brothers/sisters
70.5%
16.5%
5.5%
1.4%
Category Respite care service
The relatives were asked an open question through which were asked to state express their most emergent desires. The results realised more unfulfilled needs of people with disabilities and of their relatives. The high number of answers for unfulfilled needs shows this (no=560). One third of the needs (30%) is related to social services. Participants in the study said that a wide range of services lacked for the children with disabilities: establishment of a supportive centre during weekend to help the parents; establishment of a centre for these people where they can stay after their parents die; establishment of centres for people mentally disabled even in small cities where the children live in the community; psycho-social services, physical therapy and entertaining areas. Other needs were related to the establishment of conditions to entertain kids with disabilities (18.9%). Sportive, cultural environments, summer camps, playgrounds, leisure activities during weekend were some of the unfulfilled needs. Picture 21 shows that employment of people with disabilities is an issue to be considered (12.8%). From picture 21 results that parents need more information, therapy and support to afford the limited ability of their kid (5.1%).
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Picture 21. Needs 34
Caritas Albania
IV. CONCLUSIONS Persons with disabilities in Albania are involved in the actual social care system but not in the adequate mass and quality. This because of the fact that this system is based in policies and in a legal framework which should be reviewed in order to be improved and avoid the actual chaotic operations. In regard of their question “How they feel?� Many of them were expressed happy. This has to do with the fact that in the centre of the gallop have been persons with mental disabilities and late mental development which in Albania are totally an objective of insults, prejudices and abuses. Due to the fact that they were as rarely on the focus of the attention made them feel important and happy. This dictates the unavoidable need of an individual work with them in order to take their thoughts in regard of the need which they have. The results are speaking for persons with disabilities as periodic patients of the different health dental ophthalmology services and the reaction of almost the half of the parents that their children with disabilities didn’t received the same service compared to the other children in the health institutions because of the staff lack of knowledge in regard of communicating with children with different abilities and because of the different attitude of these medical staffs that show the fact that still exist barriers which bring discrimination in direction of DP and their right to benefit one of the vital services the health one. For this reason is asked a direct intervention in order to offer to the medical staffs the basic knowledge of the specifics and communication with disabled persons such as giving them knowledge on the human rights that disabled people have in order to benefit from health services as expressed in the last international documents A very important service for children further progress development has to do with the recommendation for genetic analyzes. The situation where the 65% of the parents said that the genetic analyzes were not recommended by the doctors show a lack of attention in regard of disability and also its lack of evaluation in real size by professional doctors. It is also showing a lack of attention in order to involve this request in the compulsory medical practices. Is necessary that this obligation is involved in the base of health service and it is realized if it is possible during pregnancy for mothers and as soon as possible for the born babies. The results of the 35
The Social Care for People with Mental Disabilities
study in regard of the evaluation made by Medical Commission on Defining Working Ability (for the kind of rehabilitation service, for the kind of work which a child can do represent high figures (table 6) compared with the previous studies where is defined that the Medical Commission on Defining Working Ability has evaluated only their health situation. This comes as a consequence of the influence of the staffs persons who realized the observation and created a conformist relationship with them. The higher percentage of parents (41%) of them is directed to special school for their children education. This because there they feel more protected and they have the support of specialists meanwhile in the normal schools supportive services are missing. Parents uncertainty and fear to leave their disabled children under the influence of a community which is not aware and knows few things about them makes that 25% of them drop out school or 40,5 % frequent only special schools. To many structure barriers as lack of transport service or lack of personal assistant, offences which they have faced in schools and obstacles coming by the respective authorities has made that the majority of parents can not realize their children education. The results in regard of the interviewed persons occupation show that two third of them does not work conditioned by reasons that come in contradiction with their wish for occupation, but also from these who are working only 41% of them is paid and they speak about legal and administrative masses lack in regard of the law application and also for the discrimination in the evaluation process compared with the other employees. The lack of opportunity for occupation expressed by 20% of disabled people and by more than half of their parents shows lack of information on the right to ask accommodation in the work place. It is also expressed by the parents a negative approach of the work offices and of the employers who become an obstacle in this process. This shows that the adequate aware is missing in regard of the right of disabled person for occupation for creating the logic accommodation, and also they start their judgment from the damage mass and not from work ability. The high figures show that the family (parents, brothers and sisters) mainly bears on caring about mentally disabled simply based on the experience gained over the years and often it is simply intuitive that show a lack of communitarian specialized services for them. It is indispensable the information of parents and of the other relatives on the specifics that their children represent and the ways and means of services for them. On the other side this category is totally uncovered, undefended and unprepared from the effects and mental disorders that the relative shows often in an unpredicted way. In this way, the majority of cases they feel powerless and sad arriving till health disorders (parents) and to appear signals of mental disorders to 36
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(brother and sisters). This has resulted in a high number of the request for alternative services and of the indispensability for consultation and support by specialized doctors, social workers. A high percentage is related to the parents request for their children fun in their free time, a restricted request for the moment because of the prejudices and because of the health condition. But parents consider it as a necessity in growing up their children and given this they are asking the planning of other entertaining activities.
37
The Social Care for People with Mental Disabilities
V. RECOMANDATIONS It is necessary to support the actual policies with progressive masses aiming their application. The law should be improved in order to avoid the discrimination shown nowadays to the different groups of disability. A different fund management based on a changed evaluation system for people with disabilities would have increased the beneficiaries’ number, the quality of the offered service and also their range of typologies. The decentralization of competences from the central to the local authorities in ensuring services for the increase of well being of disabled people is a really indispensable step which should be accelerated in a way that the benefits of disabled people are oriented as much as possible close to them in the community. The adequate preventive polices accompanied with the necessary budget would have had as a result the minimization of problematic births and as a result the reduction of budgets and services for the born disabled people. It is necessary the increase of the aware level concerning the health and social services staffs in a way in which people with disabilities don’t feel discriminated in the quality and range of the needed services which they ask to be provided. Raising awareness among the community on the attitude toward disabled people is a necessity to improve their self-esteem and pushing them to ”dare” to get further education and employment. Increase of capacities and empowerment of people with disabilities and their relatives for knowing and understanding their rights will well orient and stimulate them to ask the adequate and effective ways in direction of a solution. The increase of communitarian service range will liberate from the “obliged isolation” parents, sisters and brothers who actually are taking care of relatives with disabilities, influencing in the family well-being increase through “the freeing of these work forces”.
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REFERENCes Albanian Disability Rights Foundation (ADRF). (1999). Public opinion attitude for people with disabilities in Albania. Tirana, Albania: ADRF. ADRF (2006a). Overview of the rights of people with intellectual disabilities in the areas of social services, health care, education, employment and vocational training. Tirana, Albania: ADRF. ADRF (2006b). Study and assessment of legislation on disabilities in Albania. Tirana, Albania: ADRF. ADRF (2007). Implementation of national strategy for people with disabilities: Monitoring report. Tirana, Albania: ADRF. ADRF (2008a). Small steps: Formative evaluation of the implementation of the standarts of social services for the individuals with disabilities in the residential and day care centers and related protection and fulfillment of human rights. Tirana, Albania: ADRF. ADRF (2008b). The implementation of the action plan of the national strategy on people with disabilities in 2007: Monitoring report. Tirana, Albania: ADRF. ADRF (2008c). Study of legal framework on disability assessment in Albania. Tirana, Albania: ADRF. ADRF (2009). Disability legal package in Albania. Tirana, Albania: ADRF. ADRF (2010a). The implementation of the action plan of the national strategy on people with disabilities in 2008-2009: Monitoring report. Tirana, Albania: ADRF. ALBVET, ADRF (2010b). Need assessment on labor market integration of people with disabilities in Fier and Berat. Retrieved June, 2, 2010 from http://www.albvet. al/web/index.php?id=64 Cabiri, Y., & Xhillari, L. (2005).Persons with disabilities in Albania: Poverty alleviation and integration: Qualitative assessment. Retrieved June, 5, 2010, from http://www. ec.europa.eu/employment_social/spsi/docs/social.../albania_study_en.pdf Caritas (2008). Need assessment survey for people with disabilities in Shkodra, Lac, Fushe Kruja region. Tirana, Albania: Caritas. Ekonomi, M. (2002). Children and disability in Albania. MONNE Country Analitical report 2002. Florence: UNICEF. Retrieved June, 10, 2010, from http://unicef-irc.org/ research/ESP/countryreports2002/alb_rep2002_eng.pdf Flagler, M. (2009). Human rights of people with intellectual disabilities in Albanian residential and day programs. Journal of Global Social Work Practice, Volume 2, 39
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Number 2, November/December 2009. Good, A. (2003). The mixed economy of welfare: state, NGOs and private sector. In S.Quin &B.Redmond (Eds.), Disability and social policy in Ireland (pp.139-154). Dublin: University College Dublin Press. GTZ (2008). The structures of the Local Government and the Process of the Decentralized of social care services for the Disabled. GTZ, Tirana, Albania: GTZ. GTZ (2009). Improving the quality of life of people with disabilities in Shkodra region: Local strategy for people with disabilities. Tirana, Albania: GTZ. Olsen, N. (2000).Albania: Oxfam country profile. Oxford: Oxfam GB. Marin, B. (2003). Transforming disability welfare policy: Completing a paradigm shift. Retrieved June, 5, 2010, from, http:// www.euro.centre.org/ability/introp.pdf Handicap International (2004). Beyond de-institutionalization: From transition toward an integrated system in South East Europe. Retrieved July, 12, 2010, from http://www.disabilitymonitor-see.org Handicap International (2006). Ensuring access of people with disabilities to social services: The need for regulatory mechanisms in South East Europe. Retrieved July, 12, 2010, from http://www.disabilitymonitor-see.org Social State Services (2009). Manual for the standards of social welfare services for people with disabilities. Retrieved, June 7, 2010, from http://www.mpcs.gov.al
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