Disability-Inclusive Development: Regional Perspectives in Latin America and the Caribbean

1. Disability-Inclusive Development: Regional Perspectives in Latin America and the Caribbean Diane Alméras

2. Contents • Regional follow-up of CRPD • Availability of disability statistics in LAC • Policy priorities: autonomy, independence and care

3. I. Regional follow-up of CRPD • Thirty countries out of 33 have signed and/or ratified the Convention, of which 22 have signed and 20 ratified its Optional Protocol. • Most governments have established a national mechanism responsible for the follow-up of the Convention and are creating a growing body of national policies as well as of specific and generic legislation. • Few of them can demonstrate that these mechanisms and policy instruments were elaborated with the active participation of representatives of the organizations of persons with disability. • ECLAC’s contribution is oriented toward awareness raising, research and access to knowledge. • Actual priorities of the Regional Commission are 1) measuring the scale of disability; 2) gathering information to assess national policy proposals; 3) promoting social inclusion and autonomy and 4) support the formulation of a first regional agenda.

4. II. Availability of disability statistics in LAC • In spite of the increased activity of statistics collection, available data are not entirely comparable between countries and still presents difficulties for generating a reliable prevalence rate in the region, especially in the Caribbean. • Estimates vary according to the degree of disability assessed using the questions contained in the various measurement instruments: censuses, household surveys or specialized surveys. • According to the latest available data from 33 countries, between 2000 and 2011, 66 millions persons were living in some form of disability in Latin America and the Caribbean. More updated (unavailable) figures could easily exceed the 85 millions estimated by the World Bank. • Over 12% of the population —5.4% in the Caribbean and 12.4% in Latin America— lives with some form of disability, although the criteria used to compile data is different depending of the countries. Regional Perspectives in Latin America and the Caribbean Diane Alméras

5. Implementation of the recommendations of the Washington Group on Disability Statistics • Countries which have already conducted their census for this round have all used the new approach with exception of Ecuador (2010), albeit with a few changes or using yes/no responses instead of including the four degrees of severity: • Latin America: Argentina (2010), Brazil (2010), Costa Rica (2011), Mexico (2011), Panama (2010) and Uruguay (2011) • The Caribbean: Anguilla (2011), Antigua and Barbuda (2011), Aruba (2010), Belize (2010), British Virgin Islands (2010), Dominica (2011), Grenada (2011), Montserrat (2011), Saint Kitts and Nevis (2011), Saint Lucia (2010), Saint Vincent and the Grenadines (2011) and Trinidad and Tobago (2011). • Methodological differences have a direct impact on figures and caution must be exercises when making comparisons.

6. Scale of disability in Latin America and the Caribbean • Disability is more prevalent in countries with an older population. Based on estimates from UNFPA, the over-60 population currently makes up 10% of the total population of LAC and is expected to reach 20% shortly. • In over half the countries, disabilities are much more prevalent among women than among men, especially when aged 60 and over. • Population groups which are most economically and socially vulnerable exhibit higher rates of disability: rural-dwellers, indigenous peoples and Afro-descendants in Latin America, and those with lower incomes. • These groups register both a higher incidence of disability an a greater degree of disability owing to a lack of timely care: households where there a more persons with disabilities also lack resources of access to services.

7. Latin America and the Caribbean (31 countries): prevalence of disability by sex (Number per thousand)

8. Latin America and the Caribbean (29 countries): Population ageing and Disability

9. Persons with disabilities are more concentrated in older and low-income populations: prevalence of disability (all types) by age group and income quintile in Chile, Costa Rica and Mexico(Per 1,000 inhabitants)

10. III. Policy priorities: autonomy, independence and care • Care policies for persons with disabilities should be geared towards enhancing their autonomy and dignity. • Assistance and care requirements for persons with disabilities are rising in the region as well as the rest of the world. Reasons include: • Demographic transition, with its rising incidence of chronic and degenerative diseases • Medical advances are boosting catastrophic injury survival rates • Unhealthy lifestyles • Poverty which continues to rise in absolute numbers if not in percentages in our region • Armed conflicts, urban violence and gender violence are also important causes of disability • Lack of policies for prevention and timely assistance • Social inequalities are heightened by a lack of appropriate services since care and rehabilitation are often complex, costly and, when provided privately, available only for a small proportion of population.

11. The concept of disability and care is evolving

12. Living independently and being includedin the community (Article 19 of CRPD) • Autonomy refers to the ability to live in community with little or no help from others albeit with assistive technologies • Independence is understood as the ability to take decisions and be responsible for their consequences according to personal preferences and environmental requirements, even if someone else’s help and support is needed. • Independent living includes family and community support, residential support services, respite services, information and advice. • The need for support services is determined by individual functioning, health conditions, stage of life cycle and environmental factors.

13. Living with different types and levels of disability • The same types of disability are prevalent throughout the 21 Latin American and Caribbean countries: • Visual impairment and trouble walking, going up stairs or moving the lower extremities are the most common disabilities, followed by: • Speech and hearing impairments in Latin America; • Mental impairments that have an impact on behaviour and reduced dexterity for self-care and using objects in the Caribbean. • Persons with a visual disability have less difficulty in entering the school system and the labour force. Next come persons with auditory and motor disabilities. • Persons with impairments in cognitive and mental functions have fewer opportunities for social integration and difficulties in looking after themselves. • Available data confirm the rising incidence of multiple disability over the life cycle, which creates additional care problems, both because different kinds of support are needed and the growing dependence of these persons.

14. Living and care arrangements • Percentage of persons with disabilities who live alone is particularly high. • The majority receive care and support from immediate family, especially women. • This situation takes an heavy toll on the family’s emotional and financial well-being and highlights the shortfall in the supply of care services provided by the State, the market and civil society organizations. • Increasing number of countries of ALC are rolling out government programmes that provide support to family care-givers, home-care services and support for independent living. • Actual public and private services in the region include help for shopping, cleaning and cooking and companionship. • Some countries now offer a basic level of medical care in the home as well as the provision of technical aids and varying degrees of economic assistance to help pay for care, rehabilitation services and home adaptation.

15. Accessibility as a barrier to independent living • Accessibility must be framed in terms of not only physical access, but all barriers that either restrict or prevent persons with disabilities from participating in society, including access to information and attitudinal behaviours. • Access must be viewed as multidimensional and cross cutting, which spans a broad range of support and services including access to education, employment, health, family, social and recreational participation. • Physical environment is often a barrier to the physical mobility of persons with disabilities, in particular the absence of adequate transportation, ramps and special parking facilities. • Architecture design often serve to restrict access to buildings, private and public spaces and services, including courts of law, police stations and polling stations.

16. Autonomy and protection of economic and social rights • Persons with disabilities are overrepresented in the figures on poverty, unemployment, low educational achievement and discrimination. • Access to inclusive education, employment and social security coverage for persons with disabilities should be viewed within the framework of social care governance. • In addition to social inclusion, school attendance helps develop the capacity to express oneself and make decisions. • Paid work is a source of empowerment and autonomy. • Greater functional autonomy and independence allows for a greater capacity for self-care and defending our human rights. • Public policies and interventions that are centered on solidarity, care, respect of human rights and autonomy are both an ethical and practical imperative.