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Chile

Key Factors: A welfare-based approach to disability issues prevailed in Chile for many years.1 After the departure of the military regime and the establishment of democracy in 1990, social issues became an integral part of the political agenda. Government resources have been redirected to develop programs that enhance education, health, housing, and the quality of life for the most needy, including people with disabilities. Law 19284 on the Social Integration of Persons with Disabilities was enacted in 1994 as part of this shift in the political landscape.2 Ten years later, however, the pace of integration of people with disabilities into the various social sectors is still slow.



Terminology

Early legislation regarding people with disabilities focused primarily on protections rather than rights. Among the terms used in such laws were "lisiado" and "inválido", translated as "crippled" and "handicapped," respectively. In addition, the phrase "incapaz", translated as "mentally retarded," was used to refer to persons with mental retardation. When directly quoting from documents, the original language has been retained.

1. Offi ce of Multilateral Policy of the Ministry of Foreign Affairs, 24 September 2003. "During the government of Augusto Pinochet no global or social integration policies were in place concerning persons with disabilities. Things only began to change in 1994 when Law 19284 on the Social Integration of Persons with Disabilities was enacted. Until the 70s in Chile there was no specifi c piece of legislation regarding persons with disabilities. Most provisions concerning the disability sector could be found in general laws that more often than not established protection measures (incapacity) and certain prohibitions based on the actual or presumed diffi culty and incapacity to carry out some legal actions such as to make a will, to adopt children, to bear witness, to marry, etc. Very few specifi c laws on disability existed including a law on vehicle import for crippled persons and a law establishing a Social Security Pension Scheme for handicapped and mentally retarded persons."

2. Law 19284, Integración Social de las Personas con Discapacidad [Social Integration of Persons with Disabilities Act], (Santiago, Chile, January 1994), www.fonadis.cl.

Definition of Disability

The Ministry of Health defines a person as having a disability when they cannot "meet the demands of the environment as compared with a non-disabled individual of the same age, gender, training, social status, family status, and geographical location as the individual to be assessed."3 The Ministry's definition of both impairments and disabilities is in accordance with those of the World Health Organization. Impairments include "intellectual/mental impairments," "sensory impairments," and "physical impairments." Disabilities are categorized as learning, labor, or social integration disabilities.

The definition found in section 3 of Law 19284 identifies a person with disabilities as "any individual who is restricted in at least one third of his or her ability to perform educational, labor or social integration activities, as a result of one or more congenital or acquired physical, mental or sensory impairments, and which can be expected to be permanent, regardless of their cause."4 According to Decree Law 869 on Social Security Pensions, persons may be classified as low-income individuals with disabilities when they are over the age of 18 and under the age of 65, meet the disability criteria established by Law 19284, and do not have an income of their own or have an income lower than the minimum monthly wage as established by law.5

Disability Population

Disability statistics in Chile are not reliable.6 According to the last census conducted in 2002, Chile has a total population of 15,401,000 people of whom 334,377 (2.2%) are persons with disabilities.7 Other national surveys of people with disabilities have obtained very different figures.

3. Mauricio Zepeda Sanchez (Deputy Director for Studies and Planning) and Eladio Recabarren Hernández (FONADIS Deputy Director's Office), email response, 9 September 2003.

4. Law 19284, www.fonadis.cl; Proposed amendments to Law 19284 on the Definition of person with disabilities states that: Leonor Cifuentes (Head of the FONADIS Legal Department), interviewed by author, Santiago, 12 August 2003. "...any individual who, as a result of one or more physical, mental or sensory impairments, has objective difficulties for his or her social integration, personal development or autonomy."

5. Decree Law 869, (1975), http://www.bcn.cl/publicadores/pub_leyes_mas_soli/admin/listado_ leyes_mas_soli.php.

6. Georgina Trincado (Documentation Center of the National Statistics Institute), interviewed by author, Chile, 7 October 2003.

7. Ibid.

The 2000 National Social and Economic survey (CASEN) found 788,509
(5.3%) persons with disabilities, more than twice the number identified by the census.8 An even greater discrepancy may be found in the results of the "Quality of Life and Health" survey (ENCAVI), conducted by MINSAL in 2000, which found that 21.7% of the population has at least one disability.9 The fluctuation in these numbers may be the result of insufficient training of interviewers, differences between survey methods, and the underreporting of disabilities among elderly people.10

Table One shows the variation in size of the disability population resulting from different definitions and methodological approaches. According to the CASEN survey, people aged 60 and older make up the largest segment of the population affected by disabilities, comprising 37.5% of the total disability population.11 Thus, any undercount of this population segment could greatly impact the final results.

Table 1: Number of persons with disabilities by survey


8. Ministry of Planning and Cooperation, Encuesta de Caracterización Socioeconómica Nacional (CASEN) [National Social and Economic Survey], Chile, 2000, http://www.mideplan.cl/sitio/ Sitio/estudiosdiscapacidad2000.pdf. Data from the 1996 CASEN survey found that 4.3% of the country's population were persons with disabilities.

9. Chilean Ministry of Health (MINSAL), Epidemiology Department, Health Promotion Department, MINSAL/PAHO/WHO.

10. Mónica Vial (an elderly woman from the Providencia Center for Senior Adults,) interviewed by author. When asked about why she had not told the CENSUS interviewer that she had bad eyesight, she answered: "He didn't ask me anything like that, and it must be due to my age". Similar reply given by another senior whose hearing was much below normal: "The interviewers only asked if I suffered from some kind of disability and I don't."

11. Encuesta de Caracterización Socioeconómica Nacional. According to the survey, more than half the persons with disabilities in Chile actually or potentially have difficulties in seeing and hearing. A total of 283,842 people stated that they had visual impairments, and 224,874 had hearing impairments. These are followed by persons with physical disabilities (130,363), mental disabilities (71,259), speech disabilities (45,725) and psychiatric disabilities (32,446). A total of
40.4% of this population segment lives in the Metropolitan Region, followed by 12.8% in the Bio-Bio region, and 10% in the region of Valparaiso. The greatest number of persons with disabilities live in rural areas.

12. National Statistics Institute (INE), CENSUS, Documentation Center, Chile.

13.Encuesta de Caracterización Socioeconómica Nacional.

14. National Statistics Institute and the Ministry of Health, Encuesta sobre Calidad de Vida [Quality of Life Survey], Chile, 2002, http:// www.minsal.cl.

Question frame % # of persons
CENSUS 2002 (INE)12 Impairments("Total") 2.2% 334,377
CASEN 2000 (MIDEPLAN)13 Impairments (Moderate and Severe) 5.3% 788,509
ENCAVI 2000 (MINSAL- NE)14 Difficulties (Mild and
Severe) 		21.7% 3,292,296

Unlike the census and CASEN surveys, the ENCAVI project is a health survey, designed using newer health and disability models. The increased percentage of persons with disabilities is at least partially accounted for by the use of these new conceptual frameworks defining disability in social terms rather than strictly as a health condition.15

Because of the differences in survey results, the Disability Councils in several municipalities are promoting initiatives to obtain more accurate data. This work is especially important since the conditions under which people with disabilities live varies widely throughout the country, and the current data set does not provide a sufficient basis from which to draw more locally relevant conclusions.16 The National Disability Fund (FONADIS) is preparing a national survey to gather disability data in 2004. FONADIS director, Andrea Zondek, referred to the initiatives of grassroots organizations and stated: "I would suggest that the municipalities should be patient, and should not spend funds which they could invest directly on integration measures. In 2004, we will carry out a survey using an instrument that is supported by the Pan-American Health Organization and has been used in other countries."17

Legislation & Disability Rights

Legal Protections

The Universal Declaration of Human Rights, which was adopted by the General Assembly of the United Nations on 10 December 1948, provides a foundation for the inclusion of all Chileans in the public agenda, government policies, and social plans. Chile has since, signed the International Covenant on Economic, Social and Cultural Rights, the International Covenant on Civil and Political Rights, the Convention on the Rights of the Child, and various other international agreements.19 Chile signed the Inter-American Convention on the Elimination on All Forms of Discrimination Against Persons with Disabilities on 6 August 1999, ratified it on 12 April 2001 and deposited the relevant instrument on 26 February 2002.18 With regard to the United Nations Standard Rules, Chile answered the questionnaire solicited by United Nations Special Rapporteur on Disability Bengt Lindqvist, and the relevant report was submitted to the permanent delegation at the United Nations on 8 April 1996.20

15. Mauricio Zepeda Sanchez and Eladio Recabarren Hernández, 9 September 2003.

16. Mauricio Zepeda Sánchez.

17. MERCADIS, Noticias: Al Detalle [News: To the Detail], (Santiago, 10 July 2003), http://www. emol.cl.

18. Organization of American States, Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons with Disabilities, www.oas.org.

19. United Nations, International Covenant on Economic, Social and Cultural Rights, the International Covenant on Civil and Political Rights and Convention on the Rights of the Child, 10 January 2003, http://www.un.org.

20. Bengt Lindqvist visited Chile in November 1996 and again in January 1998.

Chile has expressed support for the creation of a United Nations Comprehensive and Integral Human Rights Convention on Disability. The Ministry of Foreign Affairs and FONADIS reported that "Chile adheres to the idea that human rights and disability are closely related, within the general context of the struggle against discrimination. From that standpoint and as a member of the United Nations Organization, Chile clearly faces the challenge of contributing to and extending the scope of International Public Law, a field of Law under development, which plays an increasingly predominant role in protecting the rights of persons with disabilities."21

With regard to national legislation, the Political Constitution establishes rights for all Chileans.22 There are, however, no specific protections for persons with disabilities provided under the constitutional guarantees.

On 5 January 1994, Law 19284 on the Social Integration of Persons with Disabilities was enacted, using the UN Standard Rules as a guideline. Its purpose is "to establish the manner and conditions for the full integration of persons with disabilities into society and ensure the full enjoyment of rights recognized in the Constitution and the law to all persons."23 It obligates the state to provide programs in the area of disability prevention and rehabilitation, as well as access to culture, information, communication, the built environment, education, training, labor insertion, and customs exemptions to help import technical aids. The law created a National Disability Register under the Civil Registry and Identification Office and FONADIS.

Law 19284 also establishes that any person who, "due to an arbitrary or illegal act or omission, is discriminated against or is threatened in the enjoyment of the rights or benefits recognized by the law, may appear by himself or herself or be represented by any person before the competent Local Police Court of his or her domicile, which must take immediate steps to ensure and reestablish the right that has been affected."24 Penalties include fines and the potential removal from the National Disability Register. Individuals and corporations are both subject to this provision.

21. Office of Multilateral Policy, Ministry of Foreign Affairs and FONADIS, Chile, 24 September 2003.

22. La Constitución Política del Gobierno de Chile [The Political Constitution of the Chilean Government], art. 1, 8 August 1980 sets forth: "Men are born free and equal, in dignity and rights.
(...) The State is at the service of the individual and its goal is to promote common welfare. To this effect, it must contribute to the creation of the social conditions which permit each and every one of the members of the national community to achieve the greatest possible spiritual and material fulfillment, with full respect for the rights and guarantees established by this Constitution. It is the duty of the State to safeguard the national security, to provide protection for the people and the family, to promote the strengthening of the latter, to further the harmonious integration of all the sectors of the Nation and to ensure everyone the right to participate in the national life with equal opportunities". Also, article 19 guarantees to all persons: Equality before the law. In Chile there are no privileged persons or groups. (...) Freedom to work and protection of that freedom. (...) Any discrimination which is not based on personal skills or capability is prohibited, although the law may require Chilean citizenship or age limits in certain cases".

23. Law 19284.

24. Ibid.

In addition to the provisions of Law 19284, some laws specify penalties for violations of the rights of persons with disabilities these include the Criminal Code and the Minors Act, among others.25 The National Service for Minors (SENAME) assists children both with and without disabilities who are under the age of 18 and have been subjected to any kind of abuse. However, there are no specific procedures for reporting abuses against most persons with disabilities.

Municipal governments, which are independent from the central administration, implement policies issued by the central government. There are 12 municipal offices within the Santiago Metropolitan Region that provide social services and assistance in obtaining assistive devices and scholarships that are available through FONADIS.26

Legal Barriers

The Civil Code establishes that persons who are deaf and cannot speak are declared "legally incapable" if they cannot make themselves understood in writing. Once declared legally incapable, persons cannot marry or administer their property. These provisions are currently under review. Amendments have been proposed that would eliminate these restrictions along with others prohibiting some persons wiht sensory impairments from becoming judges or notaries public and from acting as witnesses.27

Similarly, the law states that "any adult who is under a permanent state of insanity must be deprived of the power to manage his or her own property, even if he or she has lucid intervals."28 Section 16 of Law 18825 states, "the right to vote will be suspended when a person is declared legally incapacitated on the grounds of insanity."29 In the case of both persons who are deaf and persons with severe mental disabilities, guardians are appointed to, in theory, protect their interests.

Civic Participation

Voting is compulsory in Chile unless a citizen has a qualified exemption. Among those exempted are those who cannot reach polling stations, such as people who are bedridden or in the hospital, people over the age of 70, and people with disabilities who cannot vote because they have no one to accompany them. Exemptions must be certified at the nearest police station. A family member or any person who presents the voter's identity card may obtain a certification of exemption.

25. Código Penal Chileno [Chilean Criminal Code], sec. 363, www.cajpe.org.pe/rij/bases/legisla/ chile/codpench.htm. Section 363 of the Chilean Criminal Code establishes specific penalties for the rape of a young person with mental disabilities.

26. FONADIS, Ñuñoa Municipal Disability Council, Directorio Metropolitano de la Discapacidad [Metropolitan Disability Guide Book], (2002); Emma Lohaus (social worker responsible for Community Promotion in the Municipality of La Pintana), interviewed by author, 2000 and 2001. There is neither coordination nor are there any common guidelines across these offices.

27. Leonor Cifuentes (Head of the FONADIS Legal Department), email response, Chile, 12 August 2003.

28. Civil Code, Sec. 456.

29. Law 18825, http://www.bcn.cl.

Leaders of disability organizations estimate that around half of polling stations are accessible during elections. Temporary ramps are often installed, and Civil Defense or military personnel provide assistance to persons with mobility impairments. People with disabilities may by accompanied to the voting booth by a person they trust.30 There are special ballots for the blind.31

Since over half of the polling stations remain inaccessible, fulfilling the obligation to vote is still very difficult for many people with disabilities. According to one report, "officials who are responsible for implementing the law determine which facilities should be available to this group (people with disabilities). In practice, this situation has led to abuses including flagrant violations of these voters' rights on the part of various officials in the electoral process, bringing greater 'political apathy' than is usual in average citizens of this country."32 In addition to facing architectural barriers, people with disabilities who wish to vote may also lack access to information on candidates or their political platforms, as this type of information is often not available in alternative formats.

Inclusion

Communication

Section 20 of the Integration of Persons with Disabilities Act states that "public libraries shall gradually make available materials and facilities usable by persons with visual impairments." The Chilean National Library, which is located in the capital of Santiago, does not contain a Braille version of the Political Constitution, although some other publications are available for persons who are blind.33 The Tape-Recording Center, the National Library for the Blind, and the Special Schools for the Blind have alternative format versions of the Constitution.34

The Central Library for Blind Persons publishes the first Braille magazine for children and youth with visual impairments.35 The magazine was launched in response to the lack of educational and informational resources in alternative formats.

Although the Integration of Persons with Disabilities Act mandated that stations "implement audiovisual communication mechanisms and provide persons with hearing disabilities with access to information in news shows," historically broadcasters had been very reluctant to do so.36 Both the Televisión Nacional of Chile and the television station associated with the Catholic University of Chile have a daily news program with simultaneous sign language interpreting.36

30. Panel discussion with leaders of the disability organizations, discussion facilitated by author, Santiago, Providencia, 30 August 2003.

31. Mauricio Zepeda Sánchez and Eladio Recabarren Hernández, 9 September 2003.

32. Maria Soledad Cisternas Reyes (Associate researcher of the Center of Legal Research and DIrector of the Legal Program on Disability), "Examining Chilean Election Laws and the Rights of Voters with Disabilities," (School of Law, Diego Portales University, Chile, November 2001, http: //www.electionaccess.org/publications/BP_TOC.htm.

33. Interview with a National Library Official, Santiago, 30 June 2003.

34. The National Library for the Blind and the Special Schools for the Blind are subsidized by the government.

35. FONADIS, http://www.fonadis.cl/index.php?seccion=37.

36. This system was first implemented in Chile in the 1980s. However, TV stations discontinued it. In 2002 it was restored thanks to efforts made by the Chilean Club of Deaf Persons in lobbying television executives.

In 2003, the National Television Association (ANATEL) came to an agreement with organizations of people who are deaf, committing to offer sign language interpretation of the noon news. Each of the five networks airs the news with sign language interpretation for a three-month period. This alternation allows for broad participation by the networks affiliated with ANATEL and permits access to news programs with various viewpoints for persons who are deaf.37 The advocacy

efforts of deaf organizations was extremely important to this initiative.

The FONADIS has a website that is accessible to persons who are blind or have visual impairments.39 However, the National Emergency Plan contains no method or strategy for persons with disabilities to communicate with authorities in case of emergencies or natural disasters.40

Resolution 316, issued by the Undersecretary of Telecommunications, mandates the installation of accessible public telephones by telecommunications companies. Necessary adaptations include volume control for people with moderate hearing disabilities and large keys and Braille instructions for people who are blind or visually-impaired. Maximum and minimum heights are also established.41 Nationally, the adaptation of the Chilean telephone service is just beginning. A positive example is a telephone for the deaf that is available in the headquarters of the electrical utility, Chilectra, in Maipú, Santiago.

Education

The Integration of Persons with Disabilities Act specifies that equal educational opportunities be available for persons with disabilities. Only under exceptional circumstances should they be directed to special schools. The Ministry of Education has issued a regulatory order, intended to ensure that the law is implemented. The Ministry of Education also oversees the funding and evaluation of programs. Schools that integrate students with disabilities can request special subsidies for additional human and material resources.42

As with the larger disability population, Chile lacks reliable data on the number of school-aged children with disabilities. Table one shows the number of children enumerated by the census and CASEN surveys. No accurate information is available regarding the population aged 6-16.43


37. FONADIS, www.fonadis.cl/indexphp?seccion=17&articulo=693#centro. TVN and Channel 13 participate in the rotation of providing sign language interpretation of the news.

38. Law 19284, sec. 9.

39. FONADIS, http://www.fonadis.cl/index.php?seccion=37.

40. FONADIS, http://www.minterior.cl.

41. http://www.fonadis.cl/index.php?seccion=15&articulo=413.

42. Ministry of Education, Relamenta Capitul II Titulo IV de la Ley 19.284 que establece Normas para la Integración Social de Personas con Discapacidad [Regulations for Law 19284 establishing rules for the Social Integration of Persons with Disabilities], http://www.inclusioneducativa.cl/ documentos/ley19284reglamento.pdf.

43. Documentation Center of the National Statistics Institute (INE), 2002 Censo de Población Año [Population Census].

Table 2: Population of Children with Disabilities by Age Range44

Survey Age range # of persons
Census 5-9 10,538
10-14 15,304
15-19 14,815
Total 40,701
CASEN 0-5 26,021
6-18 121,430
Total 147,451

Figures are approximated using the percentages provided in the CASEN report.

According to the CASEN survey, 87.6% of children with disabilities receive some level of education as compared to 93.4% of children without disabilities. The students with disabilities also receive less education on average than those without disabilities, completing 6.4 years of schooling and 10 years of schooling, respectively.

Integrated education is available in most small and large towns, while special education schools are located in major cities of the country. Approximately 19% of elementary school children with disabilities receive their education in an inclusive setting, one where students are grouped in classes by age. For example, the Cardenal Antonio Samoré School, situated in the metropolitan region, has 1,500 students. It is one of the most active educational establishments, and has been integrating children and youth with physical disabilities since the early 1990s. Most elementary schools, however, do not have trained support staff for children with disabilities. Instead, family members may be allowed to assist the students with some activities.

All students who are advancing to high school are integrated into regular schools regardless of whether they completed their elementary education at a regular or a special school. Thus as noted above, many children with disabilities do not participate in secondary schooling. The Special Education Unit of the Ministry of Education (MINEDUC) has reported that there are currently about 1,000 high school students with different kind of disabilities enrolled in integration projects. Most secondary school students are taught in special classes in regular schools.45

44. Censo de Población Año 2002, MIDEPLAN, División [Social Division], CASEN, Encuesta de Actividad Económica [Survey - Employment], www.mideplan.cl/sitio/Sitio/estudio/ discapacidad2000.pdf.

45. Mauricio Zepeda Sanchez and Eladio Recabarren Hernández, 14 October 2003.

The MINVU General Ordinance on City Planning and Construction states that educational establishments with over 300 students must have wheelchair-accessible toilets.46 The Ministry of Education is drafting additional regulations.47 Although there are no data on the number of educational establishments meeting the MINVU requirements, 600 schools had "integration projects" as of 2001.48

The main office of the Ministry of Education in Santiago is accessible for persons with disabilities.

The Ministry of Education is responsible for the distribution of textbooks in Braille to children with visual impairments who are integrated into regular elementary schools. The FONADIS works with public agencies and private institutions to finance projects aimed at the development of materials and technical aids for people with visual impairments (books, scale models, manuals, educational materials, etc.).49 For example, one remarkable project provided Braille spelling books to 400 children who are blind and from low-income families. The initiative was financed by FONADIS with the assistance of the Gendarmery and the Santa Lucía Residential School for the Blind.50

In Chile, special education training is not required by the national teacher curriculum, but optional courses are available. Teachers may obtain a degree in "Differential Education," which is specifically concerned with disability-related issues.51 A new distance learning course on "Integration into Regular Education" is being targeted at 4,500 elementary education teachers throughout the country.52

In October of 1998, the Educational Integration Network (RIE) organized a one-day seminar on "School Integration in Chile" at UNESCO headquarters. Participants included 52 education professionals, who are working, directly or indirectly, to mainstream children and youth with disabilities within the education system. As a result, a committee was established which suggested that the topic of integration be included in elementary education curriculum, programs, and teacher training. The committee also proposed increased research on the topic of integration.53 The Ministry of Health is in charge of two programs for the early detection of disabilities, namely, the High Risk Pregnancy Program and the Healthy

46. The Ministry of Housing and City Planning, by means of Order dated 29 December 1998, www. minvu.cl, established that: "Within a three-year term, as from the date of publication of this order in the official gazette, the existing buildings for public use, the construction of which has been duly authorized and verified upon completion of works, especially such buildings where health services are provided or teaching/learning activities are carried out shall meet the minimum requirements established under section 4.1.7 of Executive Order 47."

47. Cecilia Leiva (Architect from the Urban Development Division of the MINVU), interviewed by author, Chile, 17 June 2003.

48. Enrique Norambuena, "Inclusión de Niños con Discapacidad en la Escuela Regular" [Inclusion of Children with Disabilities in Regular Schools], (debates, Challenges in Educational Policy, HINENI, UNESCO, UNICEF. Chile, December 2001).

49. Mauricio Zepeda Sanchez and Eladio Recabarren Hernandez, 9 September 2003.

50. FONADIS, http://www.fonadis.cl/indexphp?seccion=17&articulo=693#centro. The spelling books were made by 11 prison inmates of the Zenda Workshop of the Chilean Penitentiary.

51. Maria Herrera (Spanish Teaching student at the Teachers' University of Santiago), interviewed by author, June 2003.

52. The course is being implemented by FONADIS and is financially supported by MINEDUC.

53. http://www.inclusioneducativa.cl/documentos/jornada.pdf

Child Monitoring Program, both implemented by Primary Health Care Clinics.54

These programs cover mental, intellectual, sensory, and physical disabilities. Once a disability has been detected, the family is given information and advice concerning subsidies, pensions, and procedures to obtain a disability certificate from the National Disability Register. They are also given information on treatment and rehabilitation services available in the various health care networks.55

Persons with disabilities over the age of 18 may attend vocational workshops offered by 346 Special Schools across the country. Sheltered workshops are also available at both public and private health institutes.56 There

are no University-level courses on disability policy, disability rights, or inclusive education.

Employment

The Social Integration of Persons with Disability Act requires the state to "create favorable conditions for the employment of persons with disabilities in order to ensure their independence and personal development, and to enable them to exercise their right to have a family and to live a dignified life."57 However, unemployment is still an important problem for people with disabilities and a main focus of the current national disability policy. Only 25.1% of persons with disabilities have some form of employment in comparison to 51.6% of the general population.58

The difference is even more striking with regard to full time employment. About 13% of people with disabilities have full time employment, which is approximately 1/3 the 38.8% employment rate of the general population.59

Job training for people with disabilities is available from the National Training and Employment Service (SENCE) and the Technical Training Agency (OTEC). FONADIS, regional governmental organizations, secular organizations, corporations, and community organizations of persons with disabilities all finance these programs. The FONADIS finances a job placement program as well as other projects including sheltered workshops and employment support for persons with disabilities who are already working. In addition, Rotary Funds, distributed by organizations in the private sector, are available for micro-enterprises run by persons with disabilities.60 Finally, Law 19284 extends the age until which a person with disabilities can enter into a traineeship agreement from 21 to 24.

54. Mauricio Zepeda Sanchez and Eladio Recabarren Hernandez, 9 September 2003.

55. Ibid.

56. Ibid.

57.Law 19284, sec. 37.

58. FONADIS, http://www.fonadis.cl/tools/resources.php?id=103.

59. Ibid.

60. Mauricio Zepeda Sánchez and Eladio Recabarren Hernández, 9 September 2003.

Obstacles to labor integration include physical barriers, a lack of workplace accommodations, and a lack of awareness by employers. The FONADIS concluded that employers are not necessarily prejudiced against people with disabilities, but lack information about the possibilities of, and advantage to, hiring them. Evaluations conducted of the employers who have hired people with disabilities, such as Fantuzzi and Telefonica de Chile, show satisfaction with the skills, performance, and commitment of their employees with disabilities.61

Consequently, some employers have begun hiring persons with disabilities. Examples include IBM, which has a policy for hiring persons with disabilities, and the State Bank, which does not have a specific policy. With regard to government employment, there are currently a large number of public officials with disabilities (approximately 700), and some hold mid-level positions.62

One additional barrier to employment is the lack of job security in Chile. Upon obtaining work, people with disabilities lose their Social Security Disability Pension (PASIS) and other social benefits. A person is more financially secure living on his or her pension than entering the workforce. In response to this problem, Congressmen Antonio Leal and Enrique Acorssi have submitted a bill to the Chamber of Deputies, which aims to change the current policy.63

Other proposed changes to employment laws and policy include a plan allowing employers a tax deduction when hiring persons with disabilities, establishing more flexible health requirements for prospective applicants to public service jobs, and establishing a 3% employment quota for persons with disabilities in the public service.64

Health Services

Chile has two health care provision systems, ISAPRE (Social Security Health Institute) and FONASA (National Health Fund). The ISAPRE is comprised of private institutions offering health insurance for typically high fees, while FONASA is a public agency, which provides service at more modest rates or no cost for those who qualify. According to the records of the Preventive Medicine and Disability Committee (COMPIN), the majority of persons with disabilities (59.3%) belong to the FONASA health system, while only 7% belong to ISAPRE.65

61. Ibid.

62. Ibid.

63. Leonor Cifuentes.

64. Emma Lohaus; Leonor Cifuentes.

65. Caracterizacion de la Poblacion con Discapacidad Diagnosticada por las Comisiones de Medicina Preventiva e Invalidez en Chile [Characterization of the Population with Disabilities diagnosed by the Commission of Preventive Medecine and Handicap of Chile], (1999), http:// www.mideplan.cl/estudios/discapa.pdf.

The health care system used by the remaining 33.7% of persons with disabilities was unknown. Results from the latest CASEN survey show an even higher percentage of persons with disabilities covered by FONASA (81.2%). This percentage is substantially greater than that for persons without disabilities, of whom only 65.6% are enrolled in FONASA. Similarly, a total of only 7.1% persons with disabilities are covered by ISAPRE, whereas a total 20.6% non-disabled persons are covered. A greater number of persons with disabilities are assisted in health care services that are free of charge as compared to persons without disabilities.66

The Ministry of Health recently implemented the Universal Access with Explicit Guarantees (AUGE) Plan. This plan consists of a set of guarantees concerning the right to health care for all the inhabitants of the country. The plan benefits all persons living in the country, whether or not they contribute to FONASA or ISAPRE.67

There is no publicly funded organization where persons with disabilities can regularly obtain assistive devices. However, organizations can submit special projects proposals for public funding through FONADIS. The FONADIS is the main provider of assistive devices for low-income persons in the National Disability Register. The number of devices provided has increased substantially over the last decade. From 1994-1999, FONADIS supplied 12,096 devices, while between 2000 and 2002, 16,689 were supplied. The FONADIS office estimates that coverage has increased by 176%.68 Many other institutions, non-profit organizations, and foundations also help meet the needs of persons with disabilities.69 By law, the government will reimburse the duty on imported "equipment, machinery and devices which are specifically designed or adapted for use by persons with disabilities" and "special tools to facilitate communication, information and signaling for persons with disabilities."

In Chile, there are some projects built on a Community-Based Rehabilitation (CBR) model. These mostly consist of rehabilitation projects with community elements or active community participation. For example, FONADIS is financing the creation of a "stimulation room" at Sotero del Rio Hospital. Mothers with children who may develop disabilities can learn stimulation techniques at the facility.70


66. MIDEPLAN, Situacion de las Personas con Discapacidad en Chile [Situation of People with Disabilities in Chile].

67. Ministry of Health, http://www.minsal.cl. Approximately 19 diseases that affect persons with disabilities are covered by the AUGE Plan.

68. FONADIS, Informe Público [Public Account], March 2003; Mauricio Zepeda Sanchez and Eladio Recabarren Hernandez, 9 September 2003.

69. Ibid.

70. Eladio Recabarren Hernández; "hospital sotero de Rio: Apoyo terapeutico a padres de recien nacidos con discapacidad" [Sotero del Rio Hospita: Therapeutic support for parents of children with disabilities], Atrévete magazine, No. 54, February 2003.

With regard to disability prevention, the Disability Act mandates that the state "channel resources to support prevention and rehabilitation activities through programs aimed at improving access to these activities for low-income persons with disabilities."71 The Chilean government recently began a program aimed at preventing nutritional deficiencies in infants and young children. Since September 2003, the National Complementary Food Program (PNAC) has supplied special formula for low-weight premature infants under the age of one, as well as phenylalanine-free milk for children up to the age of 14 who have difficulties in metabolizing this amino acid. Chile is the only country in the region running such a program.72

Training on the provision of care for persons with disabilities is available for physicians, before and after they acquire a medical degree.73 Training programs for physical therapy, occupational therapy, physiatry, orthotics, and speech therapy also exist. There is no prosthetics training in Chile.

Housing

According to the CASEN survey, almost 92% of people with disabilities live with their families. Of these, only 7.8% are the head of household. The remainder live in the homes of their relatives.74 In Chile there are no independent living centers that provide peer counseling and referral services to people with disabilities.

Chile has a subsidized housing system, run by the Ministry of Housing and City Planning, which is used by many people with disabilities. Housing applicants answer a series of social and economic questions, and the answers are then scored to determine eligibility. In 1995, the Ministry of Housing and City Planning amended the housing subsidy system, incorporating disability into the eligibility criteria. The order allocated an additional 10 points for applicants with a disability or with family members who have a disability.75

Once subsidies are granted inaccessibility of the homes presents further barriers. Disability advocates report that few people with disabilities live in adapted, accessible housing. Typically, housing units have not been architecturally adapted for inhabitants with disabilities.76 Moreover, low cost housing is often small, making it difficult for wheelchair users to move around the interior. There

71. Law 19284.

72. FONADIS, www.fonadis.cl/indexphp?seccion=17&articulo=693#centro.

73. Fernando Moncayo (Anesthesiologist, Pulmonary anesthesiology student).

74. Resultados de la VIII Encuesta de Caracterizacion Socioeconomica Nacional.

75. Cecilia Leiva, 17 June 2003.

76. Executive Order 41, Official Gazette, 12 June 1995, www.minvu.cl. The order mandates that: "Ten additional points will be given to the applicant or applicants, should he or she or they, or his or her spouse, or one or more members of the family group, recognized as such, be enrolled in the National Disability Register. The disability will be shown pursuant to subsection 1 of section
14."

is no financial support available from the government for the adaptation of private housing.77

Additional proposals have been made to further facilitate access to housing subsidies. These include a proposal that additional points be awarded to each family group that includes a person with disabilities, thereby improving the likelihood that such families would qualify for a subsidy. A second proposal suggests that five percent of units in housing developments be allocated to persons with disabilities. Lastly, there is a proposal to create a subsidy for the adaptation of housing for persons with disabilities. None of these proposals has yet been implemented.78

Institutionalization

Chile has no special records of full-time residential facilities, and there is no mechanism for reporting incidences of abuse or death in such institutions. The Metropolitan Disability Guide has information about public and private institutions in the region. The Municipal Disability Council of Ñuñoa (a municipality in the Metropolitan Region) prepared the guide in collaboration with FONADIS, in 2002.79

Institutions provide psychological and psychiatric counseling services, rehabilitation, education, and training. Some of the most important institutions in the country include: 4 public psychiatric hospitals accommodating long-term patients, located in the Metropolitan Region; a public sector network of 54 homes around the country for adults with psychiatric disabilities and the elderly, run by the Hogar de Cristo Foundation; 16 homes for children and youth with intellectual and physical disabilities, associated with the Corporation in the Aid of the Limited Child (COANIL)80 and 40 homes for the elderly assisting 2,450 people, run by the Las Rosas Foundation.81 The recently established National Service for Senior Adults will provide resources for the care of elderly persons with disabilities. As yet, it has not been allocated significant funding, although funds are expected to be available in the near future. Chilean institutions will then be invited to compete for grants.82

The Committee on the Protection of the Rights of Patients with Psychiatric Disabilities, a part of the Mental Health Unit of the Ministry of Health, has recently published guidelines on protecting the rights of institutionalized people with psychiatric disabilities.83

77. Cecilia Leiva, 21 October 2003.

78. Leonor Cifuentes.

79. Municipal Disability Council of Nunoa and FONADIS, Directorio Metropolitano de la Discapacidad [Metropolitan Disability Guide], 2002.

80. Mauricio Zepeda Sánchez and Eladio Recabarren Hernández, 9 September 2003.

81. Andrea Valdivieso (Manager of Projects, Rose Foundation), 14 October 2003. Half of the residents are bedridden and another 443 are wheelchair users. Most have been placed there by their families. Another 60 patients will be soon referred to by the National Service for Senior Adults.

82. Andrea Valdivieso in reference to Law 19828, 27 September 2002.

83. Ministry of Health, Executive Order 570, 28 August 1998. The order mandates that: "certain decisions, which may be potentially harmful for individual rights, be taken with the highest number of guarantees and transparency, and to help individuals make informed decisions about possible their own health.

In an effort to reform the care system for persons with chronic psychiatric disabilities, the Ministry of Health created "Day Care Hospitals." The outpatient care provided by these facilities reinforces family and community participation.84

Any legally competent person may refuse a course of treatment. Patients may also refuse prescribed treatment by submitting a request in writing to the managing board of the facility. In cases where their wishes are violated, legal remedies can be sought through the courts.85

People may be institutionalized against their will in three situations. A doctor may order institutionalization in an emergency. Hospitalization cannot exceed a 72-hour period in such situations.86 Administrative institutionalization can be requested by health authorities when a person's behavior is believed to endanger him or herself or others. The police, a person's family, his or her treating physician, or any community member may petition health authorities for such an order. Lastly, a court in consultation with a psychiatrist may order judicial institutionalization in cases where criminal behavior is linked to psychiatric disturbance.87

Accessibility

Section 21 of the Disability Act states that "new constructions, public roads, public transportation, parks, gardens and squares shall be readily accessible to and usable by wheelchairs users."88 Consequently, the Ministry of Housing and City Planning has issued accessibility regulations as part of the General Ordinance on City Planning and Construction. These include specifications for street intersections, ramps, elevators, passageways sizes, and toilets, among others.89

84. Ministry of Health, Orientaciones Técnicas para el funcionamiento de Hospitales de día en psiquiatría [Technical Guidelines on Day Care Hospitals in the Field of Psychiatry], December 2001, www.minsal.cl. In the national disability plan, day care hospitals are defined "as an alternative to institutionalization for seriously ill patients, who have a Social Support Network, and to shorten the length of stay. These hospitals admit patients that are referred to by the mental health and outpatient psychiatry team, and the Short Stay Psychiatric Service."

85. Mauricio Zepeda Sánchez and Eladio Recabarren Hernández, 9 September 2003.

86. Ibid.

87. Ibid.

88. Leonor Cifuentes. A proposal has been made to amend the law in order to establish that the concept of universal design be included in all regulations concerning city planning, constructions and telecommunications. It has also been proposed to change the legal status of construction regulations and sign them into law.

89. OGUyC, www.minvu.cl.

A recent order requires that all public accommodations comply with the regulations, especially in those buildings that provide health services or education.90

Penalties for non-compliance include fines. The following amendments to the General Ordinance on City Planning and Construction have been proposed: to build anti-slip ramps at street corners and intersections, to change the width of existing ramps in accordance with appropriate universal design specifications, to place traffic lights with audible signals on streets with heavy traffic, to locate parking lots in obstacle-free areas that are close to entrances, and to create parking spaces of appropriate size for persons with disabilities.91

There are no records on the number of public buildings that have been adapted or that are adequately accessible for persons with disabilities. The MINVU is gathering this information on a national scale.92 Efforts have been made to improve accessibility in several public offices, including the National Social Security Institute (INP), the National Training and Employment Service (SENCE), the Ministry of Housing and City Planning (MINVU), the National Tourism Service (SERNATUR), the main courtyards at the Mint, and the Presidential Palace.93

There are still many governmental buildings that have not been adapted and are inaccessible to wheelchair users, such as the Ministry of Transportation and Telecommunications, and the Municipal Library in Providencia.94

In the city of Santiago, several public buildings have been adapted or remodeled for access to persons with disabilities. The Postal Service of Chile has adapted its main post office, however access is only available via a side street entrance. Since the end of 2002, the postal service's architect has been collecting information on accessibility in corporate branches throughout the country, in order to perform the necessary adaptations.95

In many municipalities, infrastructure has been improved by including ramps at street intersections although, barriers have been placed at these ramps hindering their use.96

90. Executive Order 201, 1998. The order states: "Requirements to be complied with by existing buildings for public use, the construction of which has been duly authorized and verified upon completion of works, in order to facilitate access to and movement of persons with disabilities". "Within a three-year term, as from the date of publication of this order in the official gazette, the existing buildings for public use, the construction of which has been duly authorized and verified upon completion of works, especially such buildings where health services are provided or teaching/learning activities are carried out must meet the minimum requirements established under section 4.1.7 of Executive Order 47."

91. Cecilia Leiva, 21 October 2003; Leonor Cifuenter.

92 Cecilia Leiva, 17 June 2003. The results were scheduled to be published in December 2003 and were not yet available at the time of this writing.

93. Enrique Norambuena, UNPADE, email response.

94. Natalia Toledano, Descanso y Recreación para Todos [Rest and Recreation for All], SERNATUR; Pilot Plan in the Metropolitan Region, 2002, http://www.Fonadis.cl/index.php?sec cion=15&articulo=427.

95.Patricio Pardo (Architect of the Postal Service Company of Chile), email response, Chile, 4 September 2003.

96. Interview with a Municipal official, 15 October 2003.

In the city hall, in La Florida, there is a Braille sign with directions to locate offices. However, this practice is not widespread.97

A number of national and international seminars on universal design have been sponsored by FONADIS and the Chilean Architect College in the last few years. They included: the International Seminar in 1998; the Seminar in Temuco Tenth Region, Chile in 2000; the International Seminar on Universal Design and Tourism in 2002; Sports Architecture / Universal Design in July 2003; and the International Seminar on Universal Design in August 2003. A total of 120 architects participated in these seminars.98

The transportation system in Chile is not fully accessible. In Santiago, only Line 5 of the metro is fully accessible. Line 1 of the metro, which is the oldest in the city, is in the process of being adapted. A three-level elevator was recently installed at the Chile University station where two lines intersect. Disability advocates report that station elevators can only be operated with the help of an official, and people with disabilities must sometimes wait a long time for assistence. Some transportation services are subsidized. The Metro offers discount fares for senior citizens, and because of an argeement recently signed in the town of Temuco, three bus lines provide free tickets to people with disabilities.99 Private taxis or special vans can also provide transportation for wheelchair users, although these services are extremely expensive. Wheelchair users often share taxis or ask for help when they need to use the metro.

According to a government plan, a bus system adapted for people with disabilities will begin operating by 2005.100 The initiative was announced on television, and funding began in December 2003. The system will be based on the Transantiago project and will incorporate ramps and lifting platforms for wheelchair users. The full project is scheduled to be completed by 2010.101

In August 2003, a law established rules on the use of designated parking spaces for persons with disabilities. Formerly these regulations were issued by municipal governments.102 Recent laws also require the placement of metal signs on traffic-light posts with information about street names and directions.103


97 Paulina Cavada and Adriana Lagos (Architects), Proyecto Integración de las Personas Discapacitadas a la vía Urbana [Project for the Integration of Persons with Disabilities into All Streets], financed by FONADIS in cooperation with the La Florida municipal government, 1995.

98. Chilean Architect College.

99. Boletos rebajados de locomoción colectiva para adultos mayores de Temuco y Padre Las Caras [Reduced Public Transportation Tickets for Temuco Seniors], http://www.segegob.cl/.

100. Interview with an Official of the Undersecretary of the Ministry of Transportation and Telecommunications, Santiago, 25 June 2003.

101. "24 horas Televisión Nacional," Noticias, 23 October 2003; http://www.tvn.cl., http://www.gnv. cl and http:/www.moppt.cl/documentos/otros/Transantiago.pdf.

102. This amendment will establish who can use these parking areas as well as penalties for non-compliance.

103. Ministry of Transportation and Telecommunications, Undersecretary of Transportation, Modifies annex to 1986 Order 20, Executive Order 171, 7 January 2000.

Culture, Sports, and Recreation

Some sports programs and facilities are available to persons with disabilities. The Metropolitan Sports School for Persons with Disabilities opened in April 2003. It is operated by the Metropolitan Office of Chilean Sports in cooperation with the Chilean Paralympic Federation, and it is sponsored by the Chilean Olympic Committee. Children, youth, and young adults with a variety of disabilities can learn sports including swimming, table tennis, and fencing.104 Also

in April 2003, the Pan-American Sports Federation for Cerebral Palsy (FEPAN/ CP-ISRA) and the Chilean Paralympic Federation offered a course on sports and recreation for persons with cerebal palsy. The course was taught by a team of professionals from the Cerebral Palsy International Sports and Recreation Association (CP-ISRA) and was certified by this international association.105 In

September 2003, persons with disabilities participated in the national table tennis and target shooting championships.

The "Garden of Senses" in Mundo Granja was opened in the town of La Pintana on 10 September 2003.106 The initiative, which is financed by FONADIS, will allow visitors who are blind to have greater exposure to the natural and animal world. There are signs in Braille and large type. Eventually, an electronic sound system will be installed to reproduce typical animal noises. Veterinarians and teachers associated with the garden have been trained to work with children who are blind.107

The National Tourism Service (SERNATUR) is implementing a pilot plan in the Metropolitan Region for the integration of persons with disabilities as both tourists and tourguides. The initiative is intended to encourage the tourist industry to adapt facilities and create areas for visitors with disabilities. The SERNATUR has prepared a list of tourist attractions in the Metropolitan Region that have accessible facilities and toilets for persons with disabilities.108

Disability Action & Awareness

In Chile, there is no national coordinating agency that develops disability policy. However, the Chilean government collaborates with organizations from all sectors (people with disability, women, and ethnic groups, among others) in establishing guidelines and policies for the equalization of opportunities. Chile has developed a National Disability Action Plan for 2002-2012. The MIDEPLAN and FONADIS are working with a committee of representatives from various sectors and government ministries to design, implement, and monitor the plan. Civil society is also involved through a Consultative Civil Society Committee. Law 19284 and the National Policy for Social Integration serve

104.FONADIS, http://www.fonadis.cl/index.php?seccion=17&otros=articulos=685.

105. Gloria Aravena O'Kuinghttons. The course was intended for Physicians, Physical therapists, Physical Education Teachers, Occupational Therapists, Special Education Teachers, Technicians, sports instructors, and advanced students of the mentioned areas.

106. Mundogranja belongs to the School of Veterinary and Livestock Sciences of the University of Chile.

107. FONADIS, http://www.fonadis,cl/indexphp?seccion=17&articulo=693#centro.

108. FONADIS, http://www.fonadis.cl/index.php?/seccion=15&articulo=427.

as the framework, and the plan incorporates principles such as democratization and the need for persons with disabilities to take part in decision-making processes affecting them.109 The 2004 budget for implementing the program is approximately 6 billion Chilean pesos, approximately US$8,759,124.110

During July 2003, FONADIS organized the Workshop on the International Comprehensive and Integral Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities with the assistance of the Ministry of Foreign Affairs and a representative of the United Nations High Commissioner for Human Rights.111 Government officials consulted with organizations from civil society regarding the issues NGO's hope to see the convention address. The recommendations included:















Strengthen the associative movement of persons with disabilities.

Member states should allocate budget resources as necessary for compliance with public policies regarding persons with disabilities.

States should establish internal monitoring mechanisms to ensure compliance with the convention.

Promote international solidarity and cooperation to support least developed countries, particularly in the fields of scientific research and technology transfer.

Include provisions to prevent and punish ill treatment and abuse of children with disabilities and persons with disabilities in general, taking into consideration their special situation of vulnerability.

Guarantee persons with disabilities access to regular education, at every level.

Promote initiatives for persons with disabilities, who are unable to enter the competitive job market, to access special employment alternatives including sheltered employment, sheltered workshops, tele-commuting, etc.

109. Mauricio Zepeda Sánchez and Eladio Recabarren Hernández, 9 September 2003.

110. Ibid.

111. Office of Multilateral Policy of the Ministry of Foreign Affairs together with FONADIS, 24 September 2003. More than 200 representatives of various organizations of persons with disabilities, non-governmental organizations, and officials from different State agencies whose work is related to the rights of persons with disabilities, took part in the consultative workshop. All had the opportunity of examining and discussing the international instrument under development. A final Draft Report of the Workshop was prepared.

Member states should envisage systems for transition from education to employment as well as systems of employment promotion that take into account the special needs and circumstances of persons with disabilities.

The convention should envisage a preventive approach towards occupational risks in order to eliminate or reduce their incidence as a major cause of disability."112

Under the military dictatorship, the government did not recognize disability organizations. Since the return to democracy in March 1990, such organizations have regained their status as valid entities. Most organizations are funded by contributions. For example, the Hogar de Cristo Foundation runs a membership program where each member contributes on a monthly basis. Financing for special projects is available from FONADIS, and SENAME finances some organizations that assist children and adolescents with disabilities. Other private foundations, such as the Andes Foundation and the Ideas Foundation, occasionally finance projects as do some foreign organizations.

Families participate actively in organizations of friends and family of persons with disabilities. Some of the most active include: the Union of Parents and Friends of Special Children (UNPADE); the Association of Parents with Autistic Children (ASPAUT); and the National Coordinator of Organizations of Families, Users and Mentally Ill Persons (CORFAUSAM). Some organizations work in collaboration with one another, for example, CORFAUSAM brings together different organizations focused on mental retardation. In addition, there are cross-disability organizations in Chile.113

In the area of disability awareness, disability advocates report that media campaigns are among the most effective strategies for bringing attention to human rights violations against persons with disabilities. Public demonstrations held by organizations of persons with disabilities have also been effective.114

112. Office of Multilateral Policy of the Ministry of Foreign Affairs, Chilean Government together with FONADIS, 24 September 2003.

113. Miguel Rojas (National Coordinator of Organizations of Families, Users and Mentally Ill Persons), (seminar on "An End to discrimination, Social Reintegration and Rights of Persons with Mental Illness and Mental Disabilities," September 2000).

114. Orlando Milesi, Discapacidad: Hacia una Cultura de Integración [Disability: Towards a Culture of Integration], www.bcn.cl/pags/dis/discatre.pdf. "Greater awareness regarding persons with disabilities has been evidenced by the recent marches and demonstrations by those concerned, which have been covered by the mass media that have also aired special programs on the subject."