Ngo comments on the Initial Israeli State Report on Implementing the un convention on the Rights of the Child

ARTICLE 23—CHILDREN WITH DISABILITIES

The rights of people with disabilities in Israel (including children) have been strengthened very much since the Equal Rights for Persons with Disabilities Law (1998). The basic principle of this law is that the rights of persons with disabilities and commitment of Israeli society to those rights are based on recognition of the principle of equality, of the worth of each person created in the image of G-d and on the principle of human dignity. The objective of the law is to protect the dignity and freedom of human beings with disabilities, and to anchor their right to an equal and active participation in society in all spheres of life, and also to provide a fitting response to their special needs, in a manner that will enable them to live their lives with maximum independence, privacy, and dignity, while utilizing their abilities to the utmost. The law established a Commissioner for Equal Rights for Persons with Disabilities,³ the first of its kind in Israel. However, and here we again see the gap between good lawmaking and its implementation, in the beginning of 2002, the Commissioner advocate Ayala Ophir, resigned because she received hardly any budget to do her job.

The fact that adults with disabilities have been striking for more than a month outside the Knesset, demanding the equivalent to a full salary in disabilities payments, changed the attitude of the public, which does not see the disabled only as victims, but also as people who can fight for their rights. It has unleashed a lot of solidarity with the disabled and many classes of schoolchildren came to visit them outside the Knesset where they set up a tent of protest. It improved the social position of the handicapped, including children.
About 170,000 children in Israel are either disabled or suffer from chronic illnesses, comprising thirteen percent of Israel’s child population. It is standard to evaluate the rate of pre-school children who suffer from varios disorders in their development as 5%-10% of their age group. Between 1995 and 1997 the general rate of children with chronic illness or disabilities has been 12.8% of the entire child population.⁴

The Coalition welcomes the publications by the Ministry of Education is “Open line for students” in Arabic, Amharic and Hebrew about the work of the Placement Committees (which deal with placements in Special education Schools). We welcome the publications and the tone of them and pointing out what possibilities for appeal are and how this works. We still lack these publications in English and Russian, but see these publications as a step forward for parents whose children were referred to placement committees. We are of the opinion that it was an oversight of the drafters of the Initial State Report not to mention these publications of the Open Line for Students.

The Initial State report does mention the National Health Insurance Law and it praises that all children can get now the same services and treatments. It should be mentioned, however, that before the National Health Insurance Law came into effect some children were entitled to many more treatments from their Health Fund. Children with disabilities who are 3-6 years of age, receive 27 treatments, and children from 6-9 get 18 months of treatments and not more than 54 total amount of treatments from health insurance. If a child is double handicapped or has several problems, this is really not sufficient. If a child goes once a week to physiotherapy and one a week to speech-therapy for instance, any long term effective treatment can not be provided, unless the parents pay themselves for the additional treatments.

This means that with the widening gap between rich and poor in Israel, the parents who can pay for private treatments are at an advantage, and children of parents who cannot pay have to stay underdeveloped. Children, who at a critical age do not receive enough treatment, will stay underdeveloped for the rest of their lives. The attitude of the legislator has been to make an ideological choice for mainstreaming children with disabilities in normal schools. However, arrangements by the government make implementation of this very difficult. Via the “Matia” services for children with special needs, once again, only a minimum of the minimum of services is available. This means that parents prefer to have their child in special education, because there they get much more treatment. It also means that only the people who can afford to have their child mainstreamed in normal education in the morning and who can go to additional private treatments in the afternoon for which they pay, can stay in a normal school. It is absurd that if a child with special needs is mainstreamed in normal education, he/she will lose special treatment hours. We see a trend that the children of the poor have to stay in special education (see also our comments under article 28 – education).

The Ministry of Education doesn’t finance additional equipment for children badly in need. Help is given on a fixed budget, generally lower than the wheelchair or special bed children need. Parents have to complete the budget by themselves or give their kids standard wheelchairs. This means, again, that only parents with money for necessary equipment can help their children.
Many Arab-Israeli children have to go to Jewish institutions because of the superior services, which the Arab sector cannot provide to its children due to lack of subsidies which is difficult for disabled children due to the lack of knowledge of Hebrew. This means that Arab-Israeli children have to communicate in a language that they hardly know. And many of these institutions do not employ (enough) Arab staff members who know the language (and not enough professionals in the Arab sector are available).
The Jewish Israeli hearing impaired, deaf and blind children have quite good services available.

Some parents’ organizations have developed quite a good lobby for their children, such as the Yatet organization for children with Down syndrome or Alut, the organization of parents of autistic children.

It is difficult to speak of healthcare issues for children with disabilities, without detailing their entire treatment system, including education and financial support. Adequate care of a disabled child is a holistic field, which NGOs in Israel recognize but the Government does not always place as a priority. In this sense, Israeli NGOs are well advanced of the Government, and the work of NGO’s for children with disabilities is impressive.
In the field of special education, NGO workers dealing with children with special needs are in agreement that the laws that exist in Israel are commendable, but the government fails completely to carry through its own responsibilities since it does not allocate sufficient budgets to the cause.⁵ This overarching problem of lack of funding for programs ordered by law prevents children from actually receiving the services to which they have a right, thereby rendering the laws useless. For example, a law exists requiring extra safety arrangements on transportation for children with disabilities. However, as outlined in the introduction of this report, since no government agency took it upon itself to fund such measures, children with special needs continue to travel in unprotected vans, occasionally sustaining injuries during the journey. The Government had also committed itself to funding an extended school day for children with disabilities, providing a chance for extra therapy sessions and support groups, but in practice the long school day is only implemented in schools for children with severe disabilities. Children with behavior problems, mild retardation, or learning disabilities all still have a short school day. The Government Report itself noted some of the most serious gaps in needs and services for children with disabilities.⁶ It does not, however, state what the government intends to do to minimize these gaps.
Parents generally do not know their children’s rights, and therefore are unable to request them. The lack of coordination between government ministries on this matter is extremely alarming, because responsibility falls “between the cracks.”
While children’s medical needs are covered, for the most part by the health basket provided by law, the need for paramedical services that include physiotherapy, occupation therapy, speech therapy, sports and art classes and alternative treatment, do not receive similar attention. Research shows that 75% of the children with special requirements (children with disabilities and children with chronic illness such as retardation, deafness, paralysis, cancer and severe learning and behavioral deficiencies) need paramedical services but only a third actually receive them.⁷ Furthermore, the payment required for paramedical services, in the form of personal participation by the insured child’s family in the treatment costs, especially burdens children from low income families and prevents them from actually receiving services.
TZACHI, The Organization of Consumers of Special Education, reports that because of the Special Education Law of 1988, children in special education did not used to receive health services that children in regular schools received from the National Health Services, which claimed that the Ministry of Education is responsible as stated in the law.⁷ During the year 2000, changes where inserted in both the Special Education Law as well as the National Health Law in order to force the Ministry of Health to provide all children with the Health Services they require regardless of where they receive their education (change no. 2824)
In the year 2000, two other acts were passed: The Special Treatment Frameworks (2176/p), requiring day care for infants between the ages 1-3 years with sever disabilities, who are in need of special treatments and health care for their habilitation. The other act allows Infants in Danger (a/2882) “the right to day care.” The right applies toThe right appT infants between the ages of 1-3 years who are in need of a “protective” environment because they live in family situations that require them to be removed for the majority of the day.” Due to lack o funds, however, the government has temporarily frozen both these laws. We are hopeful that the Minister of Finance will provide some funding for the year 2002, to start the habilitation of infants in need of special treatments because of their sever disabilities.

Even though these laws have been passed, parents cannot afford the court cost in order to force the government to abide by them. The laws always stipulate that they are to be implemented with the approval of budgeting from the Minister of Finance, and are therefore subjugated to the Minister’s approval.
Despite the high level of basic healthcare, the health needs of children with disabilities are not addressed to the necessary extent. The main lack is in the field of mental health, where many children who are mainstreamed and do not get proper mental health attention. Children in special education schools have therapy and counseling of various forms available to them, but children with disabilities who attend regular schools often go unnoticed by the overloaded school therapist, who has hundreds of children under his/her charge. The lack of therapy available in prisons, for drug abusers, and for other groups who are desperately in need of mental health care applies, unfortunately, to children with disabilities as well.
Palestinian children are hindered from reaching Israeli hospitals but also other Palestinian areas which are divided by checkpoints and roadblocks.
For very young autistic children⁹ (ages 0-3), there are very few options. A specific problem amongst children with autism is that some time until a diagnosis is made. The National Insurance Institute, however, did not provide retroactive payment from birth for people with disabilities, but on the basis of a diagnosis provided. A parent appealed this practice by the National Insurance Institute in the Supreme Court and won her case. However, when parents of children with autism attempt to talk with the civil servants of the Institute, they pretend to be unaware of this decision. Only if parents arrive with a photocopy of this Supreme Court decision, will they receive retroactive benefits for their disabled children.
There are also not many options available for autistic children in terms of care in the afternoon. The array of services available to a child with autism does not necessarily offer exactly what every particular child needs. Of course, a child’s financial status affects the services that will be available to him; if his parents can afford it, they are much more likely to buy him all the various types of treatments and advances available, whereas if a child’s parents cannot afford that, they will obviously only be able to provide their children with what the government offers in terms of treatment, which in some cases, might not be intensive enough.
The criteria of the National Insurance Institute of what is a disability are anti-development¹⁰. They do not recognize a child who can dress himself and shower as a disabled child. Some parents discourage their children from dressing and showering on their own, afraid of not being eligible for the badly needed financial assistance, which comes with the recognition of a “child with a disability.” The committee that has to decide about this recognition lacks a specialist in genetic diseases, (mentioned under Article 5 as well). That’s why rare diseases often do not get recognized, or if they do, it is often only after a long battle by the parents with the bureaucracy. Perhaps because of the criteria, only 16,500 children out of the 170,000 disabled or chronically ill children receive disability allowance.¹¹ The organization EITAN, for children with rare diseases, is fighting for the recognition of many children. One parent representing EITAN told us that she needs 8,000 Shekels a month(for medication, special food, diapers, etc.) for her child and the 1,800 shekels she receives from the National Insurance Institute is very much needed (but not enough). Parents who like to keep their children at home (and save the State a lot of money) do not get much help to make this possible.