My three-and-a-half-year-old daughter, Neta, has neurofibromatosis, a rare genetic disease that requires her to have a medically trained assistant with her at daycare. We recently received notification that Neta’s assistant will not be available at the start of the new school year, because the Education Ministry does not provide financial support for children with her needs between the ages of three and five. Without this vital assistance Neta will not be able to go to kindergarten with her friends, and she will have no choice but to stay at home until the funding begins again when she turns five.
For the last year and a half, Neta happily attended daycare with her assistant by her side each day, financed by the Social Affairs Ministry. However as Neta is set to enter public kindergarten, which is under the Education Ministry, the financial responsibility moves to that body. In itrs own words: “The of Education Ministry’s budget for assistants is in accordance with the compulsory education law. Towns that have mandatory education, there is a budget for assistance to children between the ages of three to four. Towns with free education, assistants’ budgets start at age five.”
Neta’s genetic disease creates benign tumors throughout her body. They have damaged her respiratory function, her ability to swallow, her chest and more. Her assistant must keep her trachea tube clean of foreign substances and feed her every two hours directly into her stomach. Outside of these special needs, Neta plays like all other children her age.
Until she was three the Social Affairs Ministry paid for Neta’s assistant in her hometown of Koranit, in Misgav. This was the happiest time of Neta’s life and she blossomed and developed significantly together with her friends. She grew up like any normal child due to her being able to attend daycare, despite her ailment.
At the end of March, my husband Motti and I were summoned to the Integration Committee within the Education Ministry for a meeting about Neta’s future needs now that she would be moving on to Education Ministry daycare program. To our shock, we were informed that Neta did not meet the accepted criteria to qualify for an assistant. She is too old for the Social Affairs Ministry and too young for the Education Ministry.
Neta falls into a bureaucratic hole. Despite the fact that the law for free education from three years old has been passed, there is no requirement that children of that age must attend free kindergartens. As a result, the Ministry of Education is not required to assist children Neta’s age and children with special needs are forced to stay home.
We even considered private assistance to cover the 4,500 shekels per month for Neta’s assistant, as this is an amount that my family and I simply cannot afford to fork out. However, the law does not allow donated funds to pay for the employment of an educator or assistant within the state system. This entanglement of bureaucracy has caused nothing but pain and disappointment to Neta and our whole family.
Neta shouldn’t have to stay behind. We will fight in order to get her into a normal kindergarten like everyone else, so she too can smile every morning. I will not stop for a moment in my fight to ensure that my daughter will start kindergarten like all her friends on August 27. We have no choice – without a stable framework with her friends around her Neta will regress back to the sick little girl at the beginning of her diagnosis.
The state must take responsibility for its children in their early years. The funds exist; they just need to be assigned to the right place.