Data to drive better services for people with disabilities in FYR Macedonia

A young man in dark glasses holding an accordion shuffled on stage in Kumanovo during an event organized to celebrate the inclusion of persons with disabilities in the local community. “Mother, do you remember me?” he sang. The haunting song, of his own composition, told of his abandonment by his family solely because he was born blind.

Stories like this are not unusual in the former Yugoslav Republic of Macedonia . Although the country ratified the UN Convention on the Rights of Persons with Disabilities in 2011, its inclusive spirit is not yet reflected in policies, public services or social attitudes.

Persons with disabilities routinely face exclusion from the labor market, public services and social life. Stigma for disabilities which in other countries would pose little obstacle to leading a “normal” life remain severe. One such example is visual impairment.

Policy support relies largely on cash benefits that discourage inclusion. And refining policies is difficult given the complete lack of census (or other) data on persons with disabilities. Before we can design programs to fight exclusion, we need to understand the depth and breadth of the problem.

The social inclusion of persons with disabilities is a shared priority goal for the UN in the former Yugoslav Republic of Macedonia and the creation of proxy indicators is a target in the UN Strategy for 2016-2020 which has recently been adopted by the Government.

To address the challenge, UNDP, UNFPA and UNICEF have joined forces in an attempt to generate – for the first time – proxy data that will help understand the numbers, locations and situations of persons with disabilities and the prevalence of specific disabilities.

Data to understand access to social services

In cooperation with the Ministry of Labour and Social Policy, national institutions and civil society, we are carrying out face-to-face surveys to understand the challenges that persons with disabilities face in realizing their right to work and to enjoy life in society.

This data will help us identify badly needed social services that are currently non-existing in local communities. In addition, it will help us assess the conditions and quality of services provided in all 81 foster families in the country, and come up with recommendations to help prevent and reverse institutionalization.

In parallel with this, focus group discussions are currently being held with professionals working in three major institutions that provide care services to persons with disabilities, to help identify and open new opportunities for employees working on rehabilitation processes.

We are also launching an innovative application for smartphones and the internet to crowdsource information on the physical barriers that persons with disabilities face, for example in entering municipal buildings or visiting the doctor (One example: there is not a single gynecologist office in the country that is equipped to accommodate wheelchairs).

Proxy approaches 

We are focusing our data collection in three regions of the country – Pelagonija, Strumica and Skopje.

We are designing methods to assess the biggest challenges people with disabilities face during their integration to the society, including:

• Physical barriers (we plan to geo-tag them)
• Entering the labour market
• Accessing public services, including education and healthcare
• Finding suitable residential solutions in the community

The principles in the UN Convention on the Rights of Persons with Disabilities will be followed in all planned activities – meaning that persons with disabilities will actively be engaged in every step of the way including design, collection and analysis of the results. 

All questionnaires will be developed together with the representatives from the Associations and NGOs working with persons with disabilities . People living with disabilities will be involved in the face-face interviews as well as in the process of development of the new services they need.

Approaches like user-journeys and positive deviance,  willl be used to identify and prioritize the barriers, needs and opportunities as experienced by people with disabilities.

We are counting on this initiative to yield four key results:

Sufficient proxy data on persons with disabilities in the country – to help make informed policies and decisions to dismantle the barriers to inclusion

• Engaging persons with disabilities in every step of the way – to ensure that they identify and prioritize their own needs
• Developing recommendations for future activities related to providing rehabilitation services for the labor market and for enabling people with disabilities to live in the community rather than in institutions
• Engaging municipalities and institutions to meet the priority needs identified by people with disabilities and their associations.

Along the way, we aim to work together to stimulate a much-needed sea change in public attitudes, so that people like the young man with the accordion in Kumanovo are no longer shunned for their differences but rather cherished for their abilities. We’d love feedback if anyone out there has tried something similar!