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The importance of research into the number, characteristics and situation of people with disabilities is agreed upon by wide sections of society.

There are basic actions in Spain that reflect this, such as Legislation 13/82 of 7 April on the Social Integration of Disabled People (LISMI), as well as the legal regulations deriving from this legislation.

Society is currently particularly aware of this issue, as the trends seen in demographic indicators show an increase in life expectancy at all ages, as well as a clear ageing of the population.

Increases in longevity and a drop in fertility, together with a growing number of women joining the labour market thus placing the emphasis of family support on society, are forcing social and political institutions to adjust their objectives to this new social situation, which requires more social support.

Given that this demographic structure is expected to continue into the future, it is essential for the institutions involved to have basic and updated information available that allows the needs of this group to be determined.

This growing interest in the integration of people with disabilities into their social environment also extends to the international arena, dating back to 1982, when the United Nations General Assembly approved the World Action Plan for People with Disabilities during its thirtieth period of sessions. Its basic objective was to promote effective measures for the prevention of disability and for rehabilitation and for meeting the objectives of equality and the full participation of people with disabilities in social life and development.

Currently, the United Nation's Statistics Division is working on the development of statistics on impairments, disabilities and handicaps using a group of experts. This group has developed a manual that includes a set of recommendations for the undertaking of statistics on this issue.

In Spain, and in response to the request for information, the INE together with INSERSO (currently IMSERSO) carried out the first Survey on Disabilities, Impairments and Handicaps in 1986, which quantified and identified the different types of limitations experienced by the Spanish population in accordance with the International Classification of Impairments, Disabilities and Handicaps (ICIDH) by the WHO.

This research, which was of great international importance (being a pioneer in the simultaneous study of three phenomena: disability, impairment and handicap), has been greatly used in order to undertake detailed studies on the needs of each group of people with these problems, according to their age, type of limitation,...

To do this, and via the signing of a collaboration agreement for actions relating to disability, the National Statistics Institute (INE), the Institute of Older People and Social Services (IMSERSO) and the ONCE Foundation have made great efforts, sharing work, knowledge and experiences in order to carry out a new statistics operation on people with disabilities.

This new statistics operation, which was undertaken during 1999, shouldn't be considered as an exact replica of the previous operation, given that the problems faced by people with disabilities have changed in this 13 year period separating both pieces of research.

Likewise, at the end of 1996, the Economic and Social Council (CED) proposed a series of employment measures to the government for people with disabilities, as well as improvements to the education system. In particular, the ONCE Foundation's and IMSERSO's proposals aimed at the INE deal with these questions as issues that should be included in the new project.

The great interest shown by the Ministry for Work and Social Affairs towards people with disabilities has resulted in significant support for this new statistical operation, which, of course, includes the aspects of employment and training and others suggested by IMSERSO, one of the main experts in this field.

Furthermore, international recommendations have also been taken into account, as far as possible, both in terms of objectives and standard instruments, without excluding an understanding of the development of disabilities and impairments as one of the main objectives of both pieces of research.

In terms of the legal framework, the 1999 Survey on Disabilities, Impairments and Health Status is registered within the statistical projects included in the 1997-2000 National Statistics Plan (PEN).

- An important increase in the amount of information from the person's perspective and not on the impairments suffered, as in the 1986 survey.

- For each type of disability, the number and characteristics of the people with this disability will be studied according to the degree of severity (minor, moderate or serious). This aspect is considered of great relevance, given that the degree of severity of each disability is directly related to the level of support that these people require from the different institutions and, therefore, to the future provision of social and health services. If the previous survey helped us discover that 15% of the Spanish population has some kind of disability, the new project aims to classify this 15% according to the degree of severity of the disability, allowing us to estimate the number of people who are completely dependent.

To do this, and via the signing of a collaboration agreement for actions relating to disability, the National Statistics Institute (INE), the Institute of Older People and Social Services (IMERSO) and the ONCE Foundation have made great efforts, sharing work, knowledge and experiences in order to carry out a new statistics operation on people with disabilities.

- The type of help (technical or from other people) received will be studied, placing special emphasis on the characteristics of carers.

- The use of social and health services, their economic regime and the type of centre used will be analysed in detail. If the demand for these services has not been satisfied, the reason for why these services have not been received will be studied.

- In terms of employment, a wide range of questions will be included on changes to economic activity as a result of a disability, measures to promote employment, types of contract, company characteristics and job searching.

- With regards training, special emphasis is given to school integration and special education.

- Questions are also included that will allow us to deduce the level of attraction of different provinces as a result of having a disability.

- Finally, the integration plan of heath strategies developed in our country, whose objective is to improve the health of the population, require a different kind of additional information on perceived morbidity, which, although falling outside the phenomenon of disability, is nonetheless essential in determining both the social and health differences between those with a disability and those without, and also in understanding the health problems that are increasingly affecting the population.

This new perspective to the survey will include various issues of general interest on a self-assessment of health status, anthropometric characteristics, temporary restrictions involving daily activities, accidents at home, at leisure places, etc,... the prevalence of chronic illnesses, life habits, level of use of services, victimisation...

With the aim of planning the survey's preparatory work with sufficient time, a consultative work group was formed in 1995 that included experts from IMSERSO and which studied disabilities, impairments and handicaps. Together with representatives from the INE, this group has worked on the preparatory stages of the draft survey.

The main objective of the meetings held was to obtain a relationship that covered the casuistry of these phenomena in Spain from all the disabilities and impairments that feature in the ICDIH, maintaining to the greatest extent the possibility of comparing this survey with the previous survey and also on an international level.

Asimismo, se analizaron las principales características que, a criterio del grupo de trabajo, deben ser investigadas. A este respecto, la Fundación ONCE solicitó al INE la incorporación en el Proyecto de una serie de preguntas concretas relacionadas con el empleo de las personas con discapacidad. P>The INE, using the working group's conclusions, carried out a pilot survey in November 1998 whose main objective was to detect and value possible difficulties that households could have in responding to the survey and those difficulties that the interviewer could encounter when carrying out interviews, such as incidents with informants, problems of understanding and presentation of the questionnaires, content, coverage and the number of questionnaires, effective times and the waiting times needed for completion and any other incident that could arise when making contact with households. This was done in order to plan the definitive survey's fieldwork with sufficient time, as well as to correct possible mistakes and/or questions that were poorly formulated in the questionnaires.

The pilot test was carried out by 8 interviewers and researched a sample of approximately 500 family dwellings.

In terms of the measurement tools, which were the questionnaires, the pilot test results caused slight modifications to be made to the questionnaires. These modifications will be included as an annex to the project together with the other conclusions once this pilot study has been completed.

The International Classification of Impairments, Disabilities and Handicaps (ICIDH) sets out three levels of consequences of disease.

The first level includes symptoms, signs or expressions of a disease at an organ or organ function level, whatever the cause.

This level of expression of disease is called impairment. An impairment is therefore any loss or anomaly of an organ or the function of this organ. For example, the absence of a hand, poor vision, deafness, learning difficulties,e tc.

The second level includes disabilities, which are the consequence of an illness occurring on a person level. For example, difficulty in moving, speaking, understanding, etc.

The third level are handicaps, which include the consequences of an illness on a social level, in other words, the disadvantages caused by the illness for the individual in relation to other people in their environment, due to an inability or difficulty in carrying out the rules or customs imposed by society.

In relation to the application of this classification, it was necessary to resolve a number of methodological difficulties that arose as a result of the classification in the 1986 survey. This was done with assistance from IMSERSO.

These difficulties currently continue to be present and given that the general solutions that were proposed before do not interfere with the previously quoted international recommendations, they have been considered valid in the new survey.

- A decision needed to be made on which question was going to be the first in the piece of research. The study began with the second level of consequences of disease, in other words, with the disabilities. This is because the classification of impairments, the first level, used medical terminology that required answers that were very complex for non-health staff to deal with.

- The ICIDH includes a large number of impairments that do not result in disabilities, which could have made a survey that was aiming to be social in nature into a piece of research focused exclusively on health issues.

- Finally, the disability and impairment classifications adapted themselves to a reasonable language for both interviewers and those being interviewed.

These were not the only problems that presented themselves in the survey's project stage, but it was necessary to solve other problems that were more general in nature in order to define the survey. These problems are described as follows:

- Given that disability is defined as a human restriction that makes a person's normal activity impossible or very difficult, the first thing was to define basic primary actions, such as walking, eating, etc. in order to be able to ask the person being interviewed which of these actions they are unable to carry out.

It is obvious that one person is able to carry out an infinite number of activities, and therefore it was necessary to limit these to basic actions in order to define the study.

- The second issue to bear in mind was that disabilities do not have to be singular. One person might have two or more disabilities that can be independent of each other or may originate from the same impairment and a solution to this situation needed to be found.

- Another issue taken into account was the moment from when a disability was considered part of the survey study. In effect, disabilities that are apparently significant, such as a very pronounced limp, might in fact not restrict a person's behaviour to a great extent and vice versa. It was therefore necessary to clearly state those cases in which a disability should be included.

- Closely related to the previous issue is the problem of determining when a disability is under study with regards how long a disability has been had. This is because this piece of research is not interested in passing restrictions that may be clearly due to temporary situation (such as a broken leg or equivalent).

- It is also interesting to highlight the fact that many restrictions may cease to be restrictions with the help of some kind of instrument, meaning that clear criteria need to be set out to this effect.

- Another important point is the problem of age. In terms of minors, it is very difficult to know whether a disability will be long-term or temporary and on the other hand, there are many restrictions that are inherent with age. For example, you can't say that a child of three months has a disability involving speaking; however they may have some kind of problem that results in this restriction in the future and which is not always detectable at the time. There is a similar problem with older people, as it is debatable whether an 80 year old's inability to run can be considered a disability. These considerations led to the need to set out different age groups when presenting the results.

The solutions taken in the 1999 survey will alleviate these difficulties, including international recommendations, which are detailed below:

For the purposes of this survey, disability is understood as a serious restriction that affects a person's activity in the long-term and originates from an impairment. One exception is however made, as some disabilities are included that don't originate in a clearly defined impairment, rather they are due to degenerative processes in which a person's age has significant influence. These disabilities are included as they can provide social and cultural information of great interest from a comparative point of view, whether with other countries or with Spain in a previous and/or subsequent period of time.

- All disabilities are collected for each person, whether they are independent of each other or not.

- An activity is considered to be seriously restricted when the subject themselves deems it so, in other words, we are aiming to quantify disabilities as they are perceived by the Spanish population.

- A restriction is considered long-term when the nature of the restriction is implicitly long-term, such as restrictions derived from learning disabilities for example, or when a restriction has been suffered or is expected to be suffered for a year or more.

- All disabilities had by people are researched even when they have overcome them with the use of some kind of technical assistance. In this regard it is important to clarify that only disabilities that have been overcome with the use of external technical assistance will be considered (crutches, wheelchairs, prosthesis that replace limbs, hearing aids, oxygen, catheters, etc). Disabilities that have been overcome with the use of internal technical assistance (pace makers, lenses to correct cataracts, prosthesis to replace knee joints, cardiac valves, brain decompression valves, pins, etc) are not included.

For example, a person who has been fitted with a pace maker and has no problems in undertaking the daily activities researched, in other words, a person who has overcome their disability with the use of a pace maker (internal technical assistance), is not considered to be disabled. If this person, who has had a pace maker fitted, is restricted in the undertaking of activities even with this internal technical assistance, then they are considered to be disabled.

On the other hand, a person who is able to carry out the daily activities being researched with the help of a wheel chair or an orthopaedic leg (external technical assistance), is considered to be disabled.

Special conditions are set in the case of visual disabilities: only those disabilities that persist with the use of glasses or lenses are included and not those that have been overcome with the use of technical assistance, even though it is external.

- In order to resolve the problem of minors and older people previously mentioned, three age groups are considered. The first group is for those people between 0 and 5 years old, the second group for those between 6 and 64 years old and the third group for those who are 65 years old and above.

For the first group, in other words, those people under 6 years old, the impairments detected are studied, both in cases where there is already some kind of restriction and in cases where although no restriction has yet shown itself, it is thought that there could be a future disability; these disabilities are not studied in detail, given the difficulty with detecting them. Having said this, possible restrictions that could be detected in children of this age will be researched.

With regards the group of people aged 64 and above, all of the variables analysed in the survey will be used, in the same way as for the central group (from 6 to 64 years old), but using independent tables so that the data is homogenous. In effect, a disability that prevents the carrying out of personal care cannot be interpreted in the same way for a twenty year old and a ninety year old.

When one dwelling is made up of two or more households, the study includes them all, but each household is treated independently.

In order to cover the survey's objectives of being able to provide estimates with a specific degree of reliability on a national and provincial level, a sample of 79,000 dwellings was chosen, distributed across approximately 3,000 census sections.

The sample was distributed between provinces, allocating one part uniformly and another part in proportion to the size of the province.

The average number of interviews per section was 25, meaning that around 300,000 people were surveyed.

Products and services / Publications / Projects and Working documents in the website / Survey on disabilities, impairments and health status 1999