PART I: Methods and Tools for Measuring Disability

TRASMONEE 2013

- AnalyticalReport, ROMANIA –

Romania ratified the UN Convention on the Rights of Persons with Disabilities in November 2010 (Law No. 221 of 11 November 2010, for the ratification of the UN Convention on the Rights of Persons with Disabilities, published in the Official Gazette No.792 of 26 November 2010). Moreover, Romania signed the Optional Protocol on 25 September 2008.

PART I: Methods and tools for measuring disability

1. Definition of disability

Law no. 448/2006 on Protection and Promotion of the Rights of Persons with Disabilities, republished, as subsequently amended and supplemented is the general legal framework on the protection of disabled persons. For the purposes of Art. 2 par. (1) of the Law, disabled persons are those persons to whom social environment, due to its failure to adapt to their physical, sensory, psychic, mental and / or related impairments, totally hinders or limits their equal opportunities for participating in the life of society, thus requiring protection measures in support of their social integration and inclusion.

In accordance with Article 1 of the Convention on the Rights of Persons with Disabilities, enacted in New York by the UN General Assembly on 13 December 2006, opened for signature on 30 March 2007 and signed by Romania on 26 September 2007 (hereinafter referred to as the Convention), ratified by Romania by Law No 221 of 11 November 2010, persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

For the purposes of Social Welfare Law No 292/2011, disability is a general term for impairment, activity limitations and participation restrictions in the context of the interaction between the individual who has a health issue and the contextual factors the same individual pertains to, namely the environmental and personal factors.

Disability is a complex, dynamic and multidimensional phenomenon. In recent decades, the Disabled People's Movement - along with many researchers in social and health sciences - has identified the role of social and physical barriers with regard to disability. The transition from an individual, medical perspective to a structural, social perspective has been described as a passage from a “medical model” to a “social model” where people are considered disadvantaged by society and not by their own disabilities.

The medical model views disability as a problem of the person, directly caused by disease, trauma or other health condition, which requires medical care provided in the form of individual treatment by professionals. Disability Management is aimed at cure or the individual’s adjustment and behaviour change. Medical care is viewed as the main issue, and at the political level the principal response is that of modifying or reforming health care policy. (International Classification of Functioning, Disability and Health, WHO, 2001).

The social model sees the disability mainly as a socially created problem, and basically as a matter of the full integration of individuals into society. Disability is not an attribute of an individual, but rather a complex collection of conditions created by the social environment. Therefore, the management of this issue requires social action, and it is the collective responsibility of the entire society to make the environmental changes necessary for the participation of people with disabilities in all areas of social life.

Hence, Disability Management is an attitudinal and ideological issue requiring social change, which in political terms becomes a question of human rights. For this model disability is a political issue. (International Classification of Functioning, Disability and Health, WHO, 2001).

In brief, according to the in-force legislation - Law No. 448/2006 (republished) on the Protection and promotion of the rights of persons with handicap, Law No. 292/2011 onsocial assistance - and the National Strategy on the protection, integration and social inclusion of persons with handicap in Romania during 2006-2013, the following definitions are used:

1. Handicap means the loss or limitation of a person’s chances to take part in the community life, at an equivalent level to other community members. It describes the interaction between the person and the environment. The aim of this definition is to focus the attention on the drawbacks in the environment and systems organized by the society, which prevent the participation of persons with handicap on equal conditions;
2. Persons with handicap are those persons for whom the social environment, inadequate to their physical, sensory, mental and/or associate impairments, totally prevent them or is limiting their access on equal conditions to the social life, requiring protection measures for their integration and and social inclusion;
3. Disability is the general term for significant losses or deviations of the body functions or structures, difficulties of the individual in performing activities and the problems encountered by involvement in life situations, according to the International Classification of Functioning, Disability and Health.

Please take note that the Romanian legislation was not fully aligned with the definition of disability as stated in the Convention. For example, as mentioned before, the concept of disability was introduced in Law No 292/2011, but in the Law no 448/2006, Romania is still using the former concept of handicap with a different scope. The legal changes are ongoing on this issue.

1. Legislation relating to different categories of disabilities[1]

2.1. Anti-discrimination legislation

Equal rights for persons with disabilities in Romania, as well as the prevention of any form of discrimination, are stated in the Constitution (article 16, Equality in rights), Law No. 448/2006, on the protection and promotion of rights of persons with disabilities, Ordinance 137/2000, approved by Law No. 48/2002 regarding the prevention and sanctioning of all forms of discrimination (as amended), Law No. 202/2002 regarding the equality of opportunities between women and men. Ordinance 137/2000 was the first legal text used effectively in Romania for sanctioning discriminatory measures in relation with persons with disabilities, well before the entering into force of the specific Law on the protection of rights of persons with disabilities (448/2006).

2.2. Other relevant legislation

Other legislation relevant for the protection of persons and children with disabilities are the following:

• Governmental Decision No. 628/2009 on implementation measures of the activities foreseen in the programme of national interest in the area of protection of rights of persons with handicap “Restructuring the old institutions for adult persons with handicap and creating residential type alternative services”;
• Governmental Decision No. 1175 Endorsement of the National Strategy on the protection, integration and social inclusion of persons with handicap in Romania during 2006-2013;
• Law No. 487/2002 on mental health and protection of persons with psychiatric disorders.

2.3. Enforcement of national legislation as regards persons with disabilities

Currently, in Romania, the handicap degree of adult persons and children can be assigned following some medical examinations performed by specialized commissions settled up at territorial level.

Assessing the classification by degree of disability for children is currently carried out by the Child Protection Committee from each county or sector of Bucharest, pursuant the Minister of Health and Family and National Authority for Child Protection and Adoptions Secretary of State Joint Order no. 725/12.709/2002 on the criteria for establishing the degree of disability for children and applying the special protection measures thereof, as amended by the Minister of Health and Minister of Labour, Family and Social Protection Joint Order no. 762/2260 of 31 July 2012. Under this latter normative act, identifying and assessing the degree of disability shall be made by reference to the International Classification of Functioning, Disability and Health, children and youth version, which was passed by the World Health Organization in 2007. It takes into account the deficiency (impairment), the activity limitation and social participation restrictions of individuals. The existence of a health condition is a prerequisite, but it does not necessarily lead to disability. The medical diagnosis is not sufficient to substantiate the falling under a certain disability category, being necessary to correlate it with the psychological evaluation (the environmental factors, including the family, the quality of education, family-taken actions, the possible neglect, as well as personal factors).

Assessing the classification by degree of disability for adults is carried out by the Disabled Adults Evaluation Committee from each county or sector of Bucharest, pursuant to the Minister of Minister of Labour, Family and Equal Opportunities and Minister of Public Health Joint Order no. 762/1.992/2007 approving the medical-psychosocial criteria which establish the falling under a certain disability degree category, as amended and supplemented by the Minister of Minister of Labour, Family and Equal Opportunities and Minister of Public Health Joint Order no. 124/205/2008 and by the Minister of Health and Minister of Labour, Family, Social Protection and Elderly Joint Order no. 692/982/2013.

The philosophy of the International Classification of Functioning and Disability passed by the World Health Organization in Geneva in 2001 was considered when drawing up these criteria; the said paper was translated into Romanian by the National Authority for Persons with Disabilities in 2003. The Ministry of Health specialized committees endorsed favourably the evaluation criteria.

The Minister of Health and Minister of Labour, Family, Social Protection and Elderly Joint Order no. 692/982/2013 has amended Chapter 1 „Mental Functions” of Annex to the Minister of Minister of Labour, Family and Equal Opportunities and Minister of Public Health Joint Order no. 762/1.992/2007 approving the medical-psychosocial criteria which establish the falling under a certain disability degree category.

This order was motivated by the Directorate of Health Care and Public Policy within the Ministry of Health whilst taking into account both the fact that the assessment and classification with regard to the autistic spectrum disorders are conducted almost exclusively on the basis of the IQ, and the existence of some inconsistencies with the Convention on the Rights of Persons with Disabilities that were reported by the Psychiatry and Child Psychiatry Committee especially in relation to the consistency of establishing the disability degree for the autistic spectrum disorders at the time of the transition from being a child to adulthood.

1. Measuring the disability prevalence

3.1. Use of the administrative sources

InRomaniathe mainadministrativesourcesof datafor persons withdisabilitiesare:

Ministry of Labour, Family, Social Protection and Elderly (Directorate General for Persons with Handicap and Department for Child Protection – former Authorities in the field)

Romanian Office for Adoptions

Under the newlegislativeprovisionsadopted atnational level, the Romanian Office forAdoptionshas implemented anIT programto highlightdistinctively theadopted children or children available for adoption who havehealth problems ordisabilities.The programbecame operationalfromApril 2012.Thusthe data providedby the Romanian Officefor Adoptions, includedin the file "Children withdisabilities.xlsx" (sheet UNICEF) concerns the periodApril - December 2012.

However, the Romanian Office for Adoptionscould notprovide datafor the indicator "Number of children with disabilities available for adoption, at the end of the year" only for 2013. The datarefer to the "Total number of children with disabilities available for adoption on 26.09.2013 and are presentedin the following table:

Unit / 2013
(on April 26, 2012)
Number of children with disabilities available for adoption, at the end of the year / Children / 351
BY GENDER
Boys / Children / 216
Girls / Children / 135
BY AGE
0-2 years old (below 3 years) / Children / 16
3-6 years old / Children / 95
7-17 years old / Children / 240
3-17 years old / Children / 335

Source: Romanian Office for Adoptions

The Department for Child Protection within the Ministry of Labour, Family, Social Protection and Elderly is collecting, on a quarterly basis, from the General Department for Social Assistance and Child Protection in counties (according to NUTS 3 level) and Bucharest Municipality, through data collecting tools, information on children with disabilities who are under the record of the Services for Complex Evaluation within these institutions (children who hold a handicap degree certificate). Statistical data currently available at the Ministry of Labour, Family, Social Protection and Elderly are included in the file "Children withdisabilities.xlsx" (sheet UNICEF)

3.2. Statistical sample surveys

Over the last years, inRomaniaseveral statistical sample surveys were carried out.

Two of them includedtopicsrelated todisabilities:

HealthInterviewSurvey developed in 2008

European Health and Social Integration Survey performed in 2012, within a project financed by Eurostat, the Institute for Socio-Economics Research and Polls (IRECSON)

For both surveys the micro data and metadata were transmitted to Eurostat to be included in the European database.

Both surveys were developed according to the Eurostat methodologies aimed to these two surveys.

1. Health Interview Survey (HIS)

Objectives

The general aim was to design, implement and report from a Health Interview Survey (HIS) in a statistical sample of the population households that can provide statistical data for describing the health status of the Romanian population which are not available from other statistical sources.

The survey was carried out in compliance with the EHIS methodology, developed by Eurostat. The survey results will be representative at national level and for NUTS 2 regions.

Target population

The target of health survey was the population households and included all persons with Romanian or foreign citizenship, with permanent residence in the selected research centers. The Eurostat methodology recommended for this survey requires as target population only persons aged 15 years and over. However, the survey was adapted, also, for persons aged less than 15 years old.

Coverage

The survey was carried out on a household sample, selected randomly from all the counties of the country and from Bucharest, from rural and urban area. All members of selected households are subject to recording, including the persons who left their places for a long time from now on (but no more than one year) in case such persons kept family relations with the household they belong, such as: pupils and students left for studies, workers left for working, detainees and arrested people, hospitalised people or temporary hospitalised in sanatoria for treatment or recovery.

The persons living permanently in common dwelling units are not included in the survey (elderly, disabled people, workers hostels and so on).

The observation unit was the household, defined as a group of two or more persons that normally live together, are generally related and manage the house (do the housekeeping) together, participating in whole or partially at the income and expenses budget of the household. The person that does not belong to another household and who declared that lives and keeps the house by her/himself is considered a single person household.

Data collection method

The data were recorded in questionnaires throughface-to-faceinterview, the main role belonging to the interviewer, who is not a specialist in medical issues. The interviewer went to the household of the person subject of the survey and, by means of direct questions, as possible addressed to each member of the household (except people under 15 years old), completed the information in the questionnaires of the survey: questionnaire of the household, individual questionnaires for adults (persons of and over 15 years old) and for children (under 15 years old). However, for a few sections of the adult questionnaire (related to tobacco and alcohol consumption, drugs and expenses for health), the data was filled in directly by the respondents, by self-recording.

For persons under 15 years old the data have been provided by an adult person within the household (in most cases this person was the child’s mother, as this is the most suitable person to provide accurate details and only in case the mother was not available the information have been provided by the child’s father or another adult person). The topics on disability were addressed to children only to a very small extent (degree of limitation in daily activities and longstanding illnesses).

Survey sampling plan

The EHIS Survey for the year 2008 was organized as a stand alone statistical survey, on a sample of 10140 dwellings, distributed in all counties in Romania. For the sampling plan a two stage sampling procedure was applied.

Of the 10140 dwellings selected in the sample, data was collected from 9963 dwellings, the rest being seasonal dwellings (131), absent dwellings, destroyed, demolished etc. (46). Within those dwellings were identified 10011 households and from those, 8835 households accepted interviews; 381 households refused to participate in the survey, 373 were impossible to be contacted and 422 were absent for a long period of time (ineligible households). The household participation rate is calculated as a number of interviewed households divided by the number of eligible households. During data collection were collected data from 18172 adults and 2616 children (under 15 years old).

Weighting method

The estimates corresponding to the entire population are calculated by extending the survey results based on the weight assigned to all households from the sample that answered the survey. Someresultsfrom the EHIS surveyare presentedin the folder "Children with disabilities.xlsx" (sheet HIS survey).

1. European Health and Social Integration Survey (EHSIS)

Objectives

The general aim was to design, implement and report from an independent survey (called European Health and Social Integration Survey – EHSIS) in a statistical sample of the population households that can provide statistical data in order to meet the needs for statistics on disability, as defined by the UN Convention and ICF, conducted in 2012. The survey has been developed in compliance with the EHSIS methodology, developed by Eurostat. The survey results will be representative for the national level and for NUTS 1.

EHSIS covers 12 sections:

- The socio-economic background (the 16 Eurostat core social variables 4 plus 2 additional variables),

- A health component (self-perceived health, existence of a longstanding health condition, longstanding limitations in activities due to a health problem and a list covering different health problems); basic activity limitation questions: seeing, hearing, walking, …; activities of daily living questions (ADL: self-care activities such as feeding oneself, dressing, bathing, …), and instrumental activities of daily living questions (IADL: domestic life activities, such as managing money, shopping, using the telephone, housekeeping), and