Ciaran Leonard gives us a quick look at how Brazil approaches the issues around the care and education of their citizens living with intellectual disability
These few lines originate in Goiania, Central Brazil, a large city of approximately 2 million inhabitants. Having recently moved from working in Delvin, Co. Westmeath, with the Muiriosa Foundation as a social care worker, I thought a quick look at how Brazil approaches the issues around the care and education of their citizens living with ID might be of some interest to Frontline readers. As our usual points of reference are often the UK, Europe and sometimes the US, how this work is approached by this particular organisation in Latin America is interesting, to say the least.
APAE (The association of parents and friends of people with disability) functions across Brazil in about 2,000 of the country’s 5,000 municipalities. It is a non-profit, voluntary organisation which operates as a kind of franchise throughout this vast land. Each entity is a separate unit operating under a wider federation of APAEs. To set up a similar operation one needs to adopt its principles and values. It was founded in 1954, but has been in operation here in Goiania since 1969 offering services to 550 citizens with ID and their families. The salaries of teachers alone are funded by the municipal government. This collaboration between the municipality and APAE is important in that APAE offers services normally considered as part of a public health service and sells services in its laboratory (see below) at low rates to the city government.
APAE is classed as an organisation which promotes human rights and focuses on social inclusion, breaking down social and economic barriers and preparing their young people for the world of work. Interestingly, they do quite an amount of work and training with the families of the service users, including training for the workplace to their immediate relatives in an effort to alleviate some of the economic and social burden on the wider family unit.
The Brazilian state, whether at municipal, state or federal level, does not provide any free public service to families of people with ID. Recently the government has declared that it would prefer to see special education incorporated into the state school system, but while theoretically a positive move, this is largely regarded as political rhetoric and ideological banner-waving, given that the state school system is grossly under-funded, mismanaged and has enormous difficulties providing basic mainstream education for the population generally, let alone a specialised, quality service of training and care for those more vulnerable in society.
APAE in Goiania functions on four separate sites across the city. In the main complex we found the administration and telemarketing sections (32 employees engaged in telemarketing to raise sufficient funds to maintain the organisation’s services). Alongside these sections, a clinic was in full flow with medical doctors, physiotherapy, social services, speech and language services and a training program for young mothers of newly born children with ID. On the other side of the building, a school for 6-12 year olds operates with classes of no more than 5 or 6 children. A large play area and restaurant completed the services on this site.
The second site across the city provides a school for older children, with emphasis on sport, cultural and leisure activities (with a swimming pool that would be the envy of professional swimmers). In this complex there are a series of training workshops for both the young adult users and for their family members, many of whom fall into the category of low-paid workers. Indeed one of the criteria which APAE adopts in accepting new service users is that they be from families of minimum salary workers or unemployed. I found it fascinating that a large proportion of their work is with family members, thereby addressing social and economic needs which often weigh negatively in the development of the person with ID.
The third site functions on a farm on the outskirts of the city. It provides a variety of training programs for the service users, including a kitchen/catering course and another which trains and assists young men particularly to enter the market of industrial cleaning. The site also boasts a state-of-the-art carpentry shop which provides quite a lot of the furniture for the wider APAE community. An arts and crafts section manufactures artefacts for a small shop on the premises. The very real engagement of the service users was palpable and I was aware of a group of young men engaged in dance and music therapy as I was shown around the complex. I was particularly struck by the open access to all power tools, saws etc. and was advised that health and safety training for the users of the workshop is ongoing, No accidents or serious injuries have been recorded in over 13 years. APAE makes very real attempts to insert their service users into the world of work. This has been successful to varying extents, depending on the motivation of the employer. After the training period at one of the workshops, the young worker is then accompanied by a social worker until they are properly integrated into their new workplace. Salaries paid are the market value for all workers in that particular category.
Perhaps what struck me most was the work that APAE carries out with pregnant women on its fourth site. This area is designated the Institute for Diagnostics and Prevention (IDP). It offers all pregnant women the possibility of testing for a series of illnesses and diseases which would potentially harm or damage the foetus. The expectant mother completes a simple blood collection in her local public health unit and it is then sent for testing, free of charge to the user, to APAE who test for a range of illnesses including HEP B, HEP C, HIV, rubella, syphilis, shingles and many other potentially foetus-harming illnesses. If a positive result in recorded, the pregnant woman is then offered accompaniment to determine any potential harm to her child.
If there was one over-riding impression I was left with after my visit, it was that this was a truly integrated service—literally from the cradle to the grave. Care and consideration commences with the accompaniment of pregnant women in high-risk categories. Clinical diagnosis and support services are on the same site as the school for younger children. Workshops and ongoing training operate and APAE is currently developing a project for their third-age group.
A further impression which remained with me was the extent of the involvement of APAE with the families of the service users. A large amount of APAE’s resources and time is invested in training parents, siblings and even grandparents in two aspects. Firstly, in the information and training needed to care for the young child with ID—how to administer medication, continue physiotherapy at home, nutritional aspects of their care and, most importantly, the psychological aspects associated with accepting and promoting the place of the child living with a ID in society. Secondly, APAE promotes and offers workshops to train the family members in a trade (seamstress, carpentry, industrial cleaning services, etc.) to address often pressing socioeconomic questions which can prejudice the ongoing development of the family member with ID. This holistic approach sees the person with ID within the context of the family unit, whose needs and development can be prejudiced by adverse economic conditions.
Interestingly, APAE does not offer residential services. Indeed, the provision of residential services across the city is extremely limited and provided by two religious institutions for those with profound ID and physical needs only. Specialised transport is not furnished, requiring the service users and their family carers to travel to and from their respective units by private means or, as in the majority of cases, by public transport. This provides its own difficulties with long queues from early morning (buses are usually packed full and extremely uncomfortable at the best of times, but the upside of this is that many of the teenage and adult service user groups learn to travel alone and engage with the public in a real manner—challenging some of the social barriers we have all become accustomed to.
APAE is currently attempting to address another emerging need in the world of ID—the care of elderly citizens with ID and their specific issues. They intend developing a project which would see the creation of small homesteads on a larger farm setting to shelter and care for those who perhaps have lost their primary carers over time.
If there were some key words which my visit to APAE presented, they would be around the concept of care for the entire family of the citizen with ID and perhaps the integrated, coordinated approach to service provision. I am extremely grateful to Snr Marcos Borges, the General Manager of APAE, Goiania, for the time he took in taking me around the various sites, for the information furnished and, indeed. for his enthusiasm in ensuring a quality service for vulnerable citizens.