Latvia is a wonderful country with green forests, beautiful summers and proper winters. Unfortunately, not everyone can enjoy all of these things. Latvia does not provide families with special needs the resources they need to live in a safe environment.
Children with special needs often require twenty-four hour assistance, which means only one parent can afford to work. The working parent is now responsible for carrying the whole family’s financial burden. Unfortunately, many of these families have parents that do not live together, and the mothers must take care of the children on their own. This puts a lot of pressure on these mothers, they are quickly exhausted and need time to recharge. Even a couple of hours a week would be helpful, but unfortunately the services of a babysitter are too expensive.
The Latvian democratic system is relatively young, and that combined with the policy of the Soviet occupation authorities makes for a disaster. The Soviet occupation authorities had purposefully excluded people with disabilities from society by segregating them into care facilities and excluding them from family life and society. These past practices have left their marks on families who are raising children with disabilities, as well as on the available support systems and public perception. This creates an environment where these families face great challenges.
Families experience their first major crisis when the child is just a year in a half. The mother is supposed to return to work, but the family cannot get a caregiver to help take care of the child. In addition, preschool education institutions are usually not equipped to admit children with disabilities at such an early age. As a result, most mothers do not return to work, leading them to lose their professional skills, and decrease the family income. If a child has a particularly severe disability and needs extra special care, the family receives a benefit of EUR 313. If the child has a general disability, the family receives a supplement of EUR 106. The minimum wage is EUR 500. Even both of these compensations combined do not equal minimum wage, and these families need much more than minimum wage to support their child.
The medication compensation system is based upon the diagnosis code principle: if a child has a diagnosis that is not classified in this system or there is still no diagnosis at all, the family cannot claim compensation of medications.
For technical aid compensation, the system is also complicated. Although the government provides various technical aids, there is a long wait time for them. A wheelchair can take between one and one in a half years. In most situations, the family cannot even choose a specific model, they have to take the standardized aids that have been purchased in public procurement. Their other option is to make a huge effort to convince the system that they need something else.
For example, in making orthoses(braces), families have to pay or ask donors for about EUR 2000-5000 per orthosis each year. If a child needs several of them, the amount is respectively higher. Another example are specialized car seats, which the government does not compensate for. They cost around EUR 2000.
This lack of assistants poses significant problems for the daily activities of the family. The law allows families to receive the service of an assistant only after the child is five years old, but neither state nor local government guarantee service providers.
The system of compensation for assistants receives the minimum wage of EUR 500 for 160 hours a week. This is without social guarantees, annual leave, training, etc. Due to this, there are practically no assistants, and family members have to take their role. If the family is able to find an assistant, they have to pay them the same amount of money each month.
Education is another big problem area for families with special needs children. School environments are not inclusive nor suitable for these children. In the physical aspect, they do not have wheelchair ramps, or any accommodations for physical disabilities. The teachers do not have the skills to work with such children, therefore in most situations families choose home education or they send their child to a specialized school. The specialized schools are in a segregated environment, often far from home, and the children often live the whole week at school. If the family budget allows it and the family manages to find an obliging school, some choose private schools. This is a very very rare case.
The country clearly does not have a developed support system. Obtaining support and organizing life is left solely to the parents who have no knowledge, money, or skills to shoulder this burden. This will weigh on them psychologically, and there is also little support for them. Parents can receive 10 visits for a psychologist’s consultation once in a lifetime, and they cannot receive a psychotherapist’s help at all. They have to pay for that themselves, and they cannot afford it.
The annual expenses for a child with disability, those from only their specific needs, families indicate that they are approximately EUR 21,600. This is how much is needed to meet their specific needs, not including clothing, food, etc. Approximately ⅓ of this amount or a little bit more can be obtained under various state support systems. The rest is provided by the families on their own, through the support of donors, and if not the child will not receive the necessary help for a high quality and integrated life.
Although the Latvian state strives to help these parents with benefits, therapies and psychological support, they are unable to support these families. The help they offer is not enough for a family raising a child with special needs.
Not only is there a lack of specialists that children need, they are also very expensive to hire. There is a long line to get state-paid specialists, and sometimes the line lasts over a year, when families need immediate help. Children also need special classes which are not included in the government-paid program. For example, ABA therapies are the most suitable for children with autism disorders, but the parents have to cover it out of pocket. Children often have special diets, which include special foods that are very expensive when not covered, and parents are forced to pay for them.
Outside of Riga, the capital of Latvia, the situation becomes more serious. There, most families are forced to live mostly on state benefits, which are so scarce that children end up living in unsuitable conditions. They may have no hot water, no electrical power and no vehicle to transport them in case of emergencies. In addition, emergency medical care in rural areas sometimes arrives several hours or even a day after the call.
Of course, we have various charities that try their best to help these families both financially and morally. Our organization, Palīdzēsim.lv, is one of those charities, but since we are a non-government organization, we don’t receive funding from the state. We have to rely on the support of donors to survive, therefore, we are very limited in providing assistance.
In a year’s time, an average of 60 social integration events are implemented by Palīdzēsim.lv. About 700 children, young people, and families participate in these events. Cooperation with most participants takes place for a long time, with about 100 new participants getting involved in the activities throughout the year.
In the summer, we organize summer camps, providing support to 20 families raising children with disabilities. Our organization involves the whole family in events and activities, thus promoting family values. The goal is to help families spend time together and get to know each other through various groups and activities.
As you can see, families raising a child with a disability in Latvia have a very difficult situation. They live in constant financial and moral insecurity trying to give their children the best future. It is unclear if they will be able to receive the necessary medical support that their child needs.
Your financial support would go a long way for these families. It would give the children the possibility of receiving the service and food that they need. For the parents, it would give them hope for their children and peace of mind from the struggling. Your support could give these children a hopeful future, and a bright present.