In My World

In My World, an NGO that works for children with Autism, Asperbergs, and ADHD. Their website is only in MK, by the way. They have only been registered about 10 months, and only working less than a year. But in that year, have they been busy! They have averaged about 1-2 events/month since beginning their work. They are the largest organization that works with autism. They have the largest personnel as well as the largest membership of parents and people with autism.

They are working on raising public awareness. They have applied for a 2 year grant that would raise awareness through TV commercials as well as ads online. They want people to start using the new terms and definitions. They want to help throughout MK not only in Skopje. While they think it would be too ambitious to work in all 120 cities, but they want to work near all the larger ones with outreach to the smaller ones. They are currently working with some local kindergartens that have about 1,300 children in them. They are training the teachers on how to respond to children with disabilities. They are hoping to create a workshop for ADHD that will help distribute pamphlets/brochures. They hope to create a booklet that is about 70-80 pages long.

They want schools to allow for children with disabilities and allow students with disabilities to be in regular classrooms. There are many problems, such as money, that they have to overcome to reach these goals in public schools. They work directly with the children to help them integrate into a normal classroom. (There are people that are called “Shadows” that follow the kids around all day in school and help them complete tasks. The goal is to decrease the time needed as a shadow.) Currently they try to help the children out as much as possible, but they often only have one hour a week at the child’s home. This is not enough time to make a quality difference in their life.

In addition to raising awareness in the community, they also help through service to children with these disabilities. There are problems with treatment. Early diagnosis is poor, and many parents don’t want to admit that their child might have a disability. (It is still seen as something to hide in MK.) So when parents do come in seeking help, they try to provide them with the necessary means to help their children. They inform them of the different laws that they have to follow and what services they are allowed from the state . They also inform them of the changes in any relevant laws and provide advice on what the parents can do to help their children.

While their main focus is service to the community, they also work a little in advocacy. They work with other NGOs telling them what problems they are facing in their service, allowing them to lobby more effectively. They also provide information about what works in other countries, and how MK could improve its services.

They hope to expand from their current office into a daily center for kids to come in to like a “normal” school. This center would have a physical therapy area as well as a small classroom. However, they are currently in the second floor of an office building on one of the main streets in Skopje. Their office consists of a large conference room and a few smaller offices.

They, like every other NGO, have a problem with funding. They have received a small grant from the US Embassy for help with a symposium. They are currently working in negotiations with the government to receive more funding as well as searching for international donors They have never received funding from inside of MK. (Although they have only been around for less than one year, so it might not be very representative.) They are negotiating with the government, but it is not a smooth connection. The government is trying to consider a lot. In My World has meet with a few ministers (in related areas, such as MoSLP or Health). They even have the MoSLP interested in opening a daily care center strictly for education.. With the ministry of health, they are working on finding a similar language for their communication in creating this new space. When they do try to work with the government,  it varies on which level of government they try to work with. It is easy to get a hold of a minister and get a meeting with them, as long as they have space in their calendar. The problem is the results of the meeting. (Were they able to find the same language? Do they have the same agenda? Is there money in the budget?) It is even easier to set up meetings with the municipality officials, but harder to get results. Every place in the city/town has social workers but it is still a different way to find results. They were able to get a meeting with the First Lady just by asking. There is also a problem with trust in their organization since they are less than a year old. Many donors are not sure if they are a legitimate organization or just trying to gain money off sympathetic causes.

I think that this NGO will do their best to succeed and fill a gap in MK. Those with disabilities are often seen as low class in MK and they are working to help change that.