It is an uncommon day for the Jamaican families who are gathered in a room in the city centre. They are here to answer a raft of questions about their children who live with disabilities.
The workshop in Jamaica is the last in a series of cognitive testing exercises already conducted in India and the United States. The effort, led by UNICEF and the Washington Group, aims to develop an interview module that will improve global data collection on children with disabilities.
By testing the way in which survey questions are understood, the goal is to achieve a common interpretation by respondents. The data tool will be rolled out in 2016, under the 6th phase of the global Multiple Indicator Cluster Survey (MICS6).
Jamaica was identified as a testing site after Dr. Rebecca Tortello, UNICEF Jamaica’s Education Specialist, took part in a global disability focal point meeting where all countries underlined the lack of data on children and families with disabilities as a common deficiency.
Jamaica has made some recent strides, including the passage of a Disabilities Act (2014), but there are mounting challenges to address. UNICEF Jamaica’s increased its focus on children with disabilities has led to the development of an early childhood special needs teaching training curriculum, a curriculum for children with moderate to severe disabilities and an age 4 assessment to aid screening, intervention and referral.
Dr. Tortello is enthusiastic about the benefits of the testing workshop in supporting some of these efforts.
“Nationally, in addition to contributing to the finalising of an international tool, this workshop has enabled us to do two important things,” said Dr. Tortello. “Firstly, it allowed us to gather data from a variety of families with different income levels, school types, and disabilities.”
“Secondly, we have trained representatives from our country office, government, NGOs and academia in a new qualitative data methodology, while advocating for ways to infuse data collection on children and families with disabilities into our national statistical agencies,” she said.
“I’ve been speaking to Dr. Tortello about including some of these questions in our regular surveys,” said Janet Martin, acting Director of Censuses, Demographic and Social Statistics at the Statistical Institute of Jamaica (STATIN). “While we may not do a full survey we could use some of the questions in household and labour force surveys.”
For me to get my son to school I have to get a driver to pick him up and drop him to school because I have to work! Some parents cannot afford that and so they don’t bother,
For many of the parents who came to be interviewed – some even carrying other parents of disabled children – the experience was a welcome opportunity to share and to be heard. For these families, the data is real – it’s about the daily challenges they face as they struggle to gain access to necessary, consistent and affordable services for their children.
“One of the challenges many parents are having is that there are not a lot of schools for children with disabilities, and when you do find one they can be expensive and some of them are hard to reach in terms of distance,” said Tamara Maxwell, a hospital worker and mother of 9-year-old Maurice Mitchell, a boy with Down’s Syndrome.
“For me to get my son to school I have to get a driver to pick him up and drop him to school because I have to work! Some parents cannot afford that and so they don’t bother,” she said.
The Washington Group wants workshops like these to ultimately lead to improved services for persons like Maurice and his mother.
“Good data leads to accurate estimates of disability prevalence and will hopefully lead to more children gaining access to services to which they are entitled,” said Kristen Miller, one of the trainers from the Washington Group.
“The researchers and policy makers we worked with from local academia, national NGOs and statistical agencies were top-notch. They were so knowledgeable and skilled. They learned and implemented our method very quickly and brought in excellent data!”
- In parallel with the above work, the HQ Education Section has drafted a guide for education ministries on the collection of data on both children with disabilities in school and the accessibility of the schools themselves, through the Education Management Information System (EMIS). This is being piloted in Tanzania and Ethiopia, and involves cognitive and field testing of a modified school in selected districts.
- A mechanism of technical and training assistance for countries who want to implement the survey module is also being developed by UNICEF and the Washington Group.