DISABILITY TRENDS and POLICY ISSUES IN JAMAICA

Perceptions of Disability Albert Einstein, Bruce Jenner, Cher, Jay Leno, Thomas Edison, Tom Cruise, Charles Darwin, Leonardo Da Vinci, Richard Strauss, Pablo Picasso, Whoopi Goldberg, Winston Churchill, Wolfgang Amadeus Mozart – Learning disabilities Aaron Copeland, Margaret Thatcher, Ronald Regan - Dementia

Perceptions of Disability The “Draft National Survey on Public Attitudes toward Persons with Intellectual Disability” revealed that while there are some positive attitudes towards these individuals, some negative perceptions remain. For example, of the sample of 650 persons, 88 per cent believed that persons with intellectual disabilities were somewhat capable of playing on a sports team for persons with intellectual disabilities only.

Perceptions of Disability Forty one per cent did not think that they were capable of playing on a team with persons who do not have an intellectual disability. There was a general opinion that a mixed team (with persons with intellectual disabilities and persons without intellectual disabilities) would be likely to result in “more injuries to the other players”, “decrease the team’s ability to win” and “make the public regard the team as second rate.”

Perceptions of Disability A significant proportion of the sample also believed that persons with intellectual disabilities are incapable of raising children. Only 2.2 per cent believe that adults with intellectual disability should live independently.

Perceptions of Disability Who do we know with a disability? Sir Winston Churchill, Abraham Lincoln, Billy Joel, Ludwig van Beethoven, Boris Yeltsin – mood disorders. Howard Hughes, David Beckham, Mozart, Dr. Samuel Johnson – Tourettes Syndrome. Agatha Christie, Albert Einstein, Alexander Graham Bell, Hans Christian Anderson, Leonardo da Vinci, Thomas Edison, Tom Cruise, Sir Winston Churchill - dyslexia

Perceptions of Disability Dr. Heather Little-White, Professor Edwin Jones, Professor Stephen Hawking, Frankyn Delano Roosevelt, Chistopher Reeve, Teddy Pendergrass, Itzhak Perlman, Sarah Newland-Martin – Wheelchair bound. Christy Brown – Cerebral palsy Helen Keller, Ludwig van Beethoven, Thomas Edison – Deaf Stevie Wonder, Helen Keller, Louis Braille, FDR, Galileo, John Milton, Andrea Bochelli, Claude Monet, Joseph Pulitzer, Lord Horatio Nelson, Sen. Floyd Morris – Blind

Perceptions of Disability What do we know about disabilities? What have we observed? How do we refer to PWD?

Experiences Minority group – vulnerability Ostracized, stigmatized, discriminated Experience ridicule, mockery Needs often ignored Object to be pitied Experience likened to racism or sexism

Situation of the Disabled Hidden Low levels of education Unemployment Limited access to social services Poor healthcare Poverty Dependency Reliance on state welfare or handouts

Factors Informing Disability Policies Definitions: cultural and legal Population data International frameworks Political ideology Partnership/ collaboration

WHO (1980): International Classification of Impairment, Disability and Handicap (ICIDH) The ICIDH provides a framework for understanding how impairment (chronic illness) impacts activity restriction (disability) and social disadvantage (handicap).

WHO (1980): International Classification of Impairment, Disability and Handicap (ICIDH) Impairment: “any loss or abnormality of psychological, physiological or anatomical structure or function” Disability: “Any restriction or lack of ability to perform an activity in the manner within the range considered normal for human beings” Handicap: “a disadvantage for a given individual, resulting from an impairment or a disability that limits or prevents the fulfillment of a role that is normal (depending on age, sex and social and cultural factors) for that individual”

United Nations World Programme of Action Concerning Disabled Persons Handicap: “It occurs when they encounter cultural, physical or social barriers which prevent their access to the various systems of society that are available to other citizens. Thus, handicap is the loss or limitation of opportunities to take part in the life of the community on an equal level with others”.

Disability: The term "disability" summarizes a great number of different functional limitations occurring in any population in any country, of the world. People may be disabled by physical, intellectual or sensory impairment, medical conditions or mental illness. Such impairments, conditions or illnesses may be permanent or transitory in nature

Policy Informing Definitions The National Policy for Persons with Disabilities and the Population Census of Jamaica use the definition of disability: "any restriction or lack of ability to perform an activity in the manner or the range considered normal for a human being. Such restriction or lack of ability must be as a result of an impairment. "an individual whose prospects of securing and retaining suitable employment are substantially reduced by physical and/or mental impairment” (Statistical Institute of Jamaica, Jamaica Survey of Living Conditions, 2001).

Challenging Definitions The Constitution still uses the terms ‘insane’ or ‘unsound mind’ to refer to persons who have intellectual disabilities. Cultural definitions/perceptions: Handicap – can make no valuable contribution Dumb- unable to think clearly Embarrassment – to be hidden

Population Data The WHO estimates that 10% of each society’s population represents the disabled. UNESCO – 17 – 20% if we include learning disabilities In Jamaica, disability data is provided by the national Census. The Census allows for the analysis of disability prevalence across various socio-economic and demographic variables, e.g. housing, unemployment and education.

Population Data Census data on PWD first collected in 1991. Comparisons were difficult due to an absence of standardized definitions of disability. Another source which identifies the population with disabilities is the annual Jamaica Survey of Living Conditions (JSLC). The module aims to determine if individuals have either physical and/or mental disabilities and how long they have had those disabilities. The results have never been published because the numbers of persons identified with disabilities in the samples have been too small to allow for wider extrapolation.

Population Data Though providing a benchmark, data was notably unreliable due to lack of clear definition of disability. Cultural (mis)understandings of disability act as a barrier to data collection. “Does ------suffer from any longstanding illness, disability or infirmity?” Data challenged due to estimates being almost half of that indicated by WHO. It is noted that institutionalized PWD are not included in the Census and may thus account for the shortfall.

Statistics Total Population 1991 Population with Disabilities 1991 % of total Total Population 2001 Population with Disabilities 2001 Males 1,167,496 50,966 4.4% 1,283,547 80,004 6.2% Females 1,213.171 60,148 5.0% 1,324,085 82,856 6.3% Total 2,380,667 111,114 4.7% 2,607,633 162,860

Statistics Whereas the population as a whole grew by 8.3% the population of persons with disabilities grew by 49%. Statistics may have improved because of better identification of PWDs or improved reporting. Note that there has been an increase in violent crime also.

Statistics When the 2001 census data were disaggregated by demographic characteristics, the results were as follows: Just over a half of the population with disabilities (83,019) were females. Some 32,207 (20 per cent) were children in the 0-14 age group (52.5 per cent males) Youth (15-24 years) accounted for 12.6 per cent (20,617).

Statistics The elderly (60 years and over) represented 29.5 per cent of persons with disabilities (48 190), of which 56.3 per cent were female. Of the total population 62,529 persons (38.3 per cent) specified their disability types. These included visual, hearing and speech impairment, physical and learning disabilities, mental retardation and mental illness.

Statistics The disability type most frequently reported was visual impairment, representing 35.9 per cent (22,425). Visual impairment was most common among the elderly. The number of persons reported as having multiple disabilities was 2,416.

International Guidelines World Programme of Action UN Convention on the Right of PWD International Year of PWD

World Programme of Action (WPA) “A global strategy to enhance disability prevention, rehabilitation and equalization of opportunities”. Emphasizes the human rights perspective. Prevention – reducing environmental, economic, social, psychological risk factors and includes early detection Rehabilitation – spans the individual, family & community Equalization – legislation, recreation, education, employment etc.

UN Standard Rules on the Equalization of Opportunities for PWD Adopted by the UN General Assembly Dec.1993 Seeks to promote the equal rights & opportunities of PWD Though not legally binding, it implies a strong political and moral commitment of Governments. Thus it guides policy development. Comprise 22 rules that sum the WPA. It addresses the preconditions for equal participation, target areas, implementation & monitoring mechanisms.

UN Standard Rules: Preconditions for Equal Participation Awareness-raising Medical care Rehabilitation Support services

UN Standard Rules: Target Areas for Equal Participation Accessibility Education Employment Income maintenance and social security Family life and personal integrity Culture Recreation and sports Religion

International Convention on the Rights of PWD Adopted by the UN General Assembly Dec. 13, 2006 Builds on and works in synergy with the Standard Rules and the WPA. It outlines legal obligations of States to promoting and protecting the rights of PWD. “To promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all PWDs and to promote respect for their inherent dignity”.

International Convention on the Rights of PWD States mandated to respect, protect & fulfill. It adopts both a development & human rights approach Moves away from PWD being objects of charity to subjects with rights and capable of making decisions. It is universal and legally binding.

National Policy for PWD Adopted September, 2000. Reflects the principles of the UN Standard Rules on the Equalization of Opportunities for PWD. Mandates the equal rights, participation & empowerment of PWD. Acts as a guideline for government in strengthening its capacity to adequately provide for the needs of PWD.

Legal Protection in Jamaica Jamaica is a signatory to the ‘Bill of Electoral Rights for People with Disabilities,’ a project of the International Foundation for Election Systems (IFES). Jamaica contributed to and signed (March 31, 2007) the Convention on the Protection of the Rights of Persons with Disabilities. Jamaica voted in favour of such a convention when it was initially proposed by Mexico in 2001.

Legal Protection in Jamaica Jamaica participated actively in the United Nations Ad Hoc committee meetings in 2001 and 2002. Policy positions that might affect persons with disabilities are included in the Jamaican Constitution, the National Policy on Disability, and various specific legal provisions.

Legal Protection in Jamaica The Jamaican Constitution guarantees certain basic rights for all persons in society, although it does not specifically mention persons with disabilities. In 1999, Parliament convened a committee to make recommendations on the amendment of the Jamaican Constitution.

Legal Protection in Jamaica PWDs are recognized and protected under the social protection system. In 1992, income tax concessions were introduced for PWDs. The tax system exempts certain income from tax for persons with disabilities of a permanent nature. Bureaucratic!

Tax Exemption in Jamaica Anyone who is permanently incapacitated either physically or mentally, and certified as such by the Disabilities Foundation of Jamaica and the Chief Medical Officer, Ministry of Health is exempt from income tax on employment income, if such a person is: Suffering from a disabling permanent physical disability, infirmity, malformation or disfigurement of indefinite duration, resulting from illness, injury or congenital defect; and or

Tax Exemption in Jamaica Suffering from a disabling permanent mental handicap, but capable of being gainfully employed.

Tax Exemption in Jamaica How to apply for the disability exemption The law provides for any person suffering from a permanent physical or mental disability, but who is capable of being gainfully employed to be exempt from Income Tax on emoluments. Employees who are certified to be permanently disabled through the Disabilities Foundation (18 Ripon Road, Kingston 5) may be entitled to a tax refund as they are exempt from Income Tax for as long as the disability lasts.

Tax Exemption in Jamaica The individual must be certified as being disabled by the Minister responsible for Social Security, on the advice of the Chief Medical Officer (CMO), Ministry of Health. The certification from CMO must be signed by the Minister of Labour & Social Security. Letters of certification are then dispatched to Tax Administration Jamaica, his/her employers and the individual.

Tax Exemption in Jamaica Finally, the exemption shall cease if that individual either, on such medical examination as the Minister responsible for Social Security may at any time require, is certified by The Chief Medical Officer to be no longer suffering from the physical handicap or mental handicap aforesaid or fails to submit such medical examination. Source: http://www.jamaicatax.gov.jm/index.php/2012-05-14-21-22-08/persons-with-disabilities

Legal Protection in Jamaica Few people are able to benefit due to the fact that many are unemployed or fall below the income tax threshold. Additional provisions include education policies, health policies, and reduced bus fares.

Legal Protection in Jamaica Services for persons with disabilities should be provided, whenever possible within the existing social, health, education and labour structure of society. These include all level of health-care, primary, secondary and higher education; general program of vocational training and placement in employment; and measure of Social Security and Social Services.

Legal Protection in Jamaica Rehabilitation services should be aimed at facilitating the participation of Persons with Disabilities in regular community services and activities. PWDs – Mental disabilities are excluded from the right to vote or stand for public office.

The Situation in Jamaica None of the public libraries has books in braille nor interpreter services for persons who are deaf or hearing impaired The ramp at the St. Andrew Parish Library (Tom Redcam Road) was built by the KCNK. Lack of sponsorship for sign language on TVJ… CVM doing captioning. The courts offering sign language classes to persons who are interested.

The Situation in Jamaica Note article “Concerns abound for women with disabilities”.

National Policy for PWD Also acts as a guide for individual agencies in improving their capacity to address disability issues, whether service or policy related. It is multi-sectoral in its approach. The Jamaica Council for PWD acts as the state agency with the responsibility for implementing the policy.

National Policy for PWD The Jamaica Council for Persons with Disabilities is the Government Agency responsible for rehabilitations, vocational training and placement of persons with disabilities in Jamaica. Under the Ministry of Labour & Social Security, it has as its objective the Equality of Opportunities between the disabled and the able-bodied.

National Policy for PWD It seeks through its services, to establish social and economic independence for Persons with Disabilities through their own efforts and labour. PWDs should live in their own communities and support families and community groups who are working with this objective.

National Policy for PWD In planning rehabilitation programmes, it is essential to take into account the customs and structures of the family and community and to promote their abilities to respond to the needs of the disabled individual.

National Policy for PWD 10 areas: Education Vocational training Employment Accommodation Communications Housing and accessibility Political and civil rights Family life Culture Recreation and sports

Jamaican Agencies The agencies for persons with disabilities that come under the umbrella of the MLSS are the Jamaica Council for Persons with Disabilities, the Abilities Foundation of Jamaica and the Early Stimulation Project. Jamaica Association for children with Learning Disabilities (JACLD); the Jamaica Association for the Deaf (JAD) Jamaica Association for Children with Mental Retardation (JACMR); Private Voluntary Organizations Ltd. (PVO), 3D Projects (Dedicated to the Development of the Disabled); Jamaica Society for the Blind; and the Combined Disabilities Association (CDA).

Vision 2030 Multi-sectoral, collaborative and inclusive strategy. Guiding principles: People-centred development Sustainability Balanced development in rural, urban and regional areas Equity – equal opportunity and rights Social cohesion and partnership

Vision 2030 Sectoral plan - PWD addressed under social development Adopted definition – Article 1 UN Conv.: “PWD 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” Vision: “A society that is inclusive and accessible, provides opportunities for all and recognizes the rights, freedoms and responsibilities of PWD in the process of nation building”.

Vision 2030 Goals: Strategies: PWD guaranteed the enjoyment of ALL human rights Inclusion of PWD in all spheres of life Prevention of disabilities Strategies: Social assistance Physical infrastructure Screening and assessment Identification and targeting of high risk environments Integrated, coordinated system of identification and referral

Disability Act Consultative process commenced in 2005/6 Yet to be passed by government. Currently exists in its 10th draft. (March 2011 – taken three years to revise 10th draft.) Jamaica remains without a national disability act despite being the first country in the world to ratify the United Nations Convention on the Rights of Persons with Disabilities. Main obstacle is the changed governance and changed priorities.

Disability Act The act, which has been in the making for several years, will provide legislative support for the rights of persons with disabilities, as indicated in the National Policy for Persons with Disabilities, which was implemented back in 2000.

Disability Act Input received from persons who have experience and authority in the area of disability and disability concerns, people who have disabilities themselves and have been working with persons with disabilities. Proposal for Disability Advocate similar to the Children’s Advocate.

Disability Act Consultations carefully took into consideration building construction, as well the retrofitting of existing buildings with facilities providing access, as well as services for persons with disabilities, under the proposed bill, in adherence with the national building code. Note that Gordon House needs retrofitting.

Disability Act The purpose of the law will be to promote, protect and facilitate the full and equal employment of all fundamental rights and freedoms for persons with disabilities in the areas of education and training, employment, political office and public life, health care, housing and public transportation. Timetable set for March 2012.

Disability Act The purpose of the law will be to promote, protect and facilitate the full and equal employment of all fundamental rights and freedoms for persons with disabilities in the areas of education and training, employment, political office and public life, health care, housing and public transportation. Timetable set for March 2012.

Stakeholders in the Policy Process Disability Issues Gov’t NGOs Private sector PWD Various gov’t ministries Jamaica Council for PWD Derrick Palmer Molly Thorburn Monica Bartley Combined Disabilities Assoc. -3D Projects Jamaica Employers Federation

Prevailing Challenges Data collection – Census provides an estimate rather than a precise measure Distinguishing medical vs social disabilities (diabetes & hypertension – interviewers) Lack of consistency in terminologies and classifications 1991 Census: persons identified as slow learners had University/ tertiary level education. Uncertainty of classification of disability yielded large number of persons being ranked in the category ‘Other’.

Prevailing Challenges “The problem is further compounded by the unsuitability of various instruments for assessing disability and handicap and by the scarcity of professionals to carry out the research. Obtaining information about disability has therefore been a difficult and time-consuming exercise, with the consequence that very little priority has been given to disability in health programmes in the region” (Bartley, 2001, Pros and Cons of Data Collected Using a Census).

Prevailing Challenges Cultural divides within the disability community Social misconceptions Absence of political will and commitment Limited resources Limited trained service professionals Absence of legislation

Way Forward Nothing about us without us From integration to inclusion Barrier and stigma free environment Increased trained professionals Revision of Census questions: Definitions Distinction between genetic and acquired disability Cause of disability Specialized training for Census interviewers – classifications, distinctions and probing

Way Forward Enacted legislation – Disability Act Approval of Special Education Policy Implementation of Vision 2030 Increased service provision Work with the private sector to provide jobs Promote micro and small business development among this segment of the populace.

References Bartley, M. (2001). “Pros and Cons of Data Collected Using a Census: The Experience of the Caribbean Countries”, UN Statistics Division, USA. International Disability Network (2004). “International Disability Rights Monitor – Regional Report of the Americas”, Center for International Rehabilitation, Chicago. Ministry of Education (2000). “National Policy for Persons with Disabilities”, Jamaica. United Nations, “Standard Rules on the Equalization of Opportunities for PWD”